Access to health services of

People Living with Disability

A Literature Review as part of
MELR Research Part 1: understanding access to Free Health
Care Initiative (FHCI) for persons living with disabilities and
adolescent-friendly services protocol as part of
Monitoring, Evaluating, Learning, and Review for Saving
Lives Programme in Sierra Leone

August 2019
CONTENTS

BACKGROUND ............................................................................................................................... 4
1.1. Rationale for Research Study ..........................................................................................................................4
1.2. Rationale for Literature Review.......................................................................................................................4
CONCEPTUAL FRAMEWORKS ....................................................................................................... 4
2.1. Access to health services .................................................................................................................................. 4
2.2. Persons with Disability ...................................................................................................................................... 6
METHODOLOGY............................................................................................................................. 6
3.1. Database search ..................................................................................................................................................7
3.1.1. Global evidence database search ....................................................................................................... 7
3.1.2. Sierra Leone evidence database search............................................................................................7
3.1.3. Additional sources .................................................................................................................................. 8
3.1.4. Review of sources.................................................................................................................................... 8
RESULTS.......................................................................................................................................... 8
4.1. Persons with disability prevalence estimates .............................................................................................8
4.1.1. Global prevalence of disability ............................................................................................................ 8
4.1.2. Prevalence and causes of Disability in Sierra Leone .................................................................. 10
4.2. Policy Environment and Action for PWD .................................................................................................. 11
4.2.1. Global Policy Environment and Action for PWD ......................................................................... 11
4.2.2. Sierra Leone Policy Environment and Action for PWD ............................................................. 16
4.3. Health Status of PWD ..................................................................................................................................... 21
4.3.1. Global Health Status of PWD ............................................................................................................ 21
4.3.2. Health Status of PWD in Sierra Leone............................................................................................ 22
4.4. Health Services Needs and Utilisation of PWD ....................................................................................... 23
4.4.1. Global Health Services Needs and Utilisation of PWD ............................................................. 23
4.4.2. Services Needs and Utilisation of PWD in Sierra Leone ........................................................... 26
4.5. Dimensions of Access to Health Services for PWD................................................................................ 27
4.5.1. Approachability ..................................................................................................................................... 27
4.5.2. Acceptability .......................................................................................................................................... 30
4.5.3. Availability .............................................................................................................................................. 33
4.5.4. Affordability ........................................................................................................................................... 37
4.5.5. Appropriateness ................................................................................................................................... 40
PROMISING INTERVENTIONS FOR INCREASING ACCESS TO HEALTH SERVICES FOR PWD 45
5.1. Promising Interventions for Increasing Access to Health Services for PWD – Global ................. 45
5.2. Promising Interventions for Increasing Access to Health Services for PWD – Sierra Leone ..... 49
DISCUSSION ................................................................................................................................. 58
6.1. Findings .............................................................................................................................................................. 58
6.1.1. Approachability ..................................................................................................................................... 58
6.1.2. Acceptability .......................................................................................................................................... 58
6.1.3. Availability .............................................................................................................................................. 59
6.1.4. Affordability ........................................................................................................................................... 59
6.1.5. Appropriateness ................................................................................................................................... 60
6.1.6. Promising Interventions ..................................................................................................................... 62
6.2. Quality of Evidence and Measurement ..................................................................................................... 62
6.3. The Way Forward ............................................................................................................................................. 63
6.3.1. Stakeholder consultation ................................................................................................................... 63
6.3.2. Sub-Study Two ...................................................................................................................................... 63
6.3.3. Sub-Study Three ................................................................................................................................... 64
BIBLIOGRAPHY ............................................................................................................................ 66
ANNEXES ...................................................................................................................................... 99
8.1. Annex 1: Search terms utilised per evidence database ...................................................................... 100
8.1.1. Global Literature Database Search ................................................................................................ 100
8.1.2. Sierra Leone Literature Database Search .................................................................................... 102
8.2. Annex 2: Promising Interventions for Increasing Access to Health Services for PWD –
Global ........................................................................................................................................................................ 103
8.2.1. Global Results – Full .......................................................................................................................... 103
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Acronyms

ACT Acceptance and Commitment Therapy

AfriNEAD African Network on Evidence to Action on Disability
BPEHS Basic Package of Essential Health Services
CAS Community Association for Psychosocial Services
CBR Community-Based Rehabilitation
CBT Cognitive-Behavioural Therapy
CHO Community Health Officer
CHW Community Health Worker
CPES Comprehensive Programme for Ebola Survivors
CSO Civil Society Organisation
DALYs Disability-Adjusted Life Years
DDR Disarmament, Demobilisation, and Reintegration
DFID Department for International Development
DPO Disabled Persons Organisations
ETC Enable the Child
EVD Ebola Virus Disease
EVDS Ebola Virus Disease Survivors
FHCI Free Health Care Initiative
FMC Facility Management Committee
GoSL Government of Sierra Leone
HIV AIDS Human Immunodeficiency Virus / Acquired Immune Deficiency Syndrome
ICF International Classification of Functioning, Disability and Health
LIC Low-Income Country
LMIC Low- and Middle-Income Countries
MELR Monitoring, Evaluation, Learning, and Review
mhGAP Mental Health Gap Action Programme
MoHS Ministry of Health and Sanitation
MoSWGCA Ministry of Social Welfare, Gender, and Children’s Affairs
NaCSA National Commission for Social Action
NASSIT National Social Health Insurance Scheme
NCPD National Commission for Persons with Disability
NGO Non-Governmental Organisation
PFA Psychological First Aid
PHU Peripheral Health Unit
PM&E Participatory Monitoring and Evaluation
PRSP Poverty Reduction strategy plans
PtPT Pikin-to-Pikin Tok
PTSD Post-Traumatic Stress Disorder
PWD Person/People Living with Disability
RMNCAH Reproductive, Newborn, Child, and Adolescent Health
SAP Sustainability Analysis Process
SDG Sustainable Development Goals
SLAB Sierra Leone Association of the Blind
SLeSHI sierra Leone Social Health Insurance
SLiSL Saving Lives in Sierra Leone
SLL Sierra Leone Leone
SLUDI Sierra Leone Union for Disability Issues
SRH Sexual and Reproductive Health

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TAG Technical Advisory Group
UHC Universal Health Coverage
UNCRPD UN Convention on the Rights of Persons with Disability
UNFPA United Nations Population Fund
UNICEF United Nations Children’s Emergency Fund
UNITE Unite fo Sev Life na Salone
USD United States Dollars
WG Washington Group on Disability Statistics
WHO World Health Organisation
YRI Youth Readiness Intervention

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 BACKGROUND

1.1. Rationale for Research Study

In Sierra Leone, in response to the President’s Post-Ebola Recovery Plan, the UK Department for
International Development (DFID) is funding the Saving Lives in Sierra Leone (SLiSL) programme which
seeks to strengthen reproductive, maternal, newborn, child and adolescent health (RMNCAH) services.
Saving Lives in Sierra Leone (SLiSL) is implemented by several partners in collaboration with the Ministry
of Health and Sanitation (MoHS): a United Nations consortium led by the United Nations Population
Fund (UNFPA) and including United Nations Children’s Fund (UNICEF) and the World Health
Organisation (WHO) as well as the ‘Unite fo Sev Life na Salone’ (UNITE) consortium led by International
Rescue Committee and including Crown Agents, Concern Worldwide, CUAMM, Restless Development,
Goal Sierra Leone, Marie Stopes Sierra Leone (MSSL), and the Royal College of Paediatrics and Child
Health. Phase 1 (September 2016 – September 2018) of the programme focused on increasing access
to preventive services (including family planning, water, sanitation and long-lasting insecticide-treated
bed nets). Phase 2 (October 2018 – March 2021), now underway, builds on the gains of the first phase.

Montrose has been contracted by DFID to deliver the Monitoring, Evidence, Learning and Review (MELR)
component of the (SLiSL) programme. The overall objective of this component is to provide DFID,
implementing partners and the Ministry of Health and Sanitation (MoHS) with comprehensive, accurate
and informative reporting on progress and delivery of the SLiSL programme. Studies and Operational
Research is one part of MELR’s work.

The 2018 MELR Inception Report outlined six priority focal areas for Studies and Operational Research.
1
Two research topics were prioritised for MELR Research Part 1: understanding access to Free Health
Care Initiative (FHCI) for persons living with disabilities and adolescent-friendly services.

The aim of the research is to understand how can differences in equity of access to services for People
Living with Disabilities (PWD) of both genders, as well as understanding promising interventions in this
area, be explored. The study utilises a framework developed by Levesque et al. 2 that examines five
dimensions of access: availability and accommodation, affordability, acceptability, appropriateness and
approachability. Each dimension integrates both supply and demand factors. (See MELR Research Part
1. Study Protocol). 3

1.2. Rationale for Literature Review

A literature review is needed to understand health status and needs, factors affecting access, and ‘equity
strata’ or attributes of PWD who may be more at risk of not accessing services. The outputs from the
literature will help to refine the research methods generally and specifically will support the selection of
indicators and ‘equity strata’ or attributes, such as urban/rural or wealth quintiles, for use in the
quantitative analyses and subsequent qualitative data collection.

CONCEPTUAL FRAMEWORKS

2.1. Access to health services

Levesque et al. 2 synthesised previous work on defining models of access to develop a revised
conceptual framework. Their model defines access as the possibility to identify healthcare needs, to seek
4
healthcare services, to reach the healthcare resources, to obtain or use health care services, and to
actually be offered services appropriate to the needs for care. Like Frenk, 4 Levesque et al. 2 utilised
broader definitions of access to and accessibility of health care services and incorporated both user and
health care service characteristics into their model. They describe five dimensions of access: availability
and accommodation, affordability, acceptability, appropriateness and approachability (see Table 1:
Dimensions of access 2). Each dimension integrates both supply and demand factors.

Table 1: Dimensions of access 2

Dimension of access Description

Approachability Services can be identified as functional and fit for purpose
Acceptability Users accept cultural and social aspects of the service
Availability Services can be reached in a timely manner
Affordability Users have economic capacity to spend resources and time to use services
Appropriateness Fit between services and users need, timeliness, care, technical and interpersonal quality

In this framework, five corresponding abilities of populations interact with the dimensions of
accessibility to generate access. Five corollary dimensions of abilities include ability to: perceive; seek;
reach; pay; and engage.

Figure 1: Levesque et al. 2 conceptual framework of access to care

Levesque et al. 2 was selected as a conceptual framework of access to care due to several characteristics.
This framework incorporates both supply and demand factors relating to services access. Moreover, it
uses a person-centred approach and focuses on skills that people must possess to achieve access to
health services. 5 Considering a disability perspective, one of the strengths of the framework is that
access is conceptualised beyond reaching the service, but also considers longer term engagement with
care over time. 6 In addition, this framework utilises an equity perspective, with a focus on the
demographic, social, economic, geographic and cultural factors that may have a relationship with the
experience and opportunities of different strata in accessing care 2,7,8 and takes into account social and
5
health dimensions of access within an equity perspective. 9,10 ecological approaches to health; 11 and
people-centred approached to healthcare. 12–14 Finally, there are strong examples of the application of
this framework in the understanding of equity of assess in primary care 6,12,15–18 and maternal services.
19,20

2.2. Persons with Disability

The International Classification of Functioning, Disability and Health (ICF) utilises a biopsychosocial lens
and defines disability as an umbrella term for impairments, activity limitations and participation
restrictions. A person's functioning and disability is conceptualised as a dynamic interaction between
health conditions (diseases, disorders, injuries, traumas, etc.) and contextual factors, including personal
and environmental. 21,22

Figure 2: Interaction of health condition, environmental and personal factors for disability 22.

In 2001, the UN formed the Washington Group on Disability Statistics, which aimed to develop, and test
question sets to support the routine collection of development indicators by disability status to compare
outcomes of people with and without disabilities. These questions allow for disaggregation by disability
status for SDG indicators and other measures of participation in ongoing monitoring efforts. 23

In DFID’s disability framework, it requests that all partners use the Washington Group Short Set of
Questions on Disability to disaggregate programme data by disability status. 24 In its Disability Inclusion
Action Plan 2017-18, DFID cites the WG questions specifically in its objective to “encourage and support
governments and partners to integrate the Washington Group Questions into social protection
information and monitoring and evaluation systems and improve reporting and use of disaggregated
data.” 25

For the purposes of this research and literature review, the ICF definition as working definition are
utilised.

METHODOLOGY

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The literature review was undertaken in two parts: a focus on evidence specific to Sierra Leone and a
focus on specific global evidence. For Sierra Leone-specific evidence, the approach utilised was
designed to capture as many sources as possible for potential inclusion. The rationale for doing so is
that the study team anticipated fewer resources in this area. For global evidence identification, a more
targeted approach aimed to include generalisable evidence, preferably in the form of evidence
synthesis, that may also be applicable to the Sierra Leonean context.

Database searches combined with direct communication with specific service providers and
stakeholders to identify potential grey literature were undertaken. The sourcing of references in this
literature review was partially purposive, rather than systematic. Each step is detailed below.

3.1. Database search

3.1.1. Global evidence database search

A search of available literature was conducted in April and May 2019. A set of key search terms were
used throughout various research search engines and repositories (PubMed, Cochrane Reviews, Europe
PMC, PsychNet). Specific search queries were constructed per database to fit to their design, but all
consisted of three conceptual components:

health services + access + disability

health services + access + mental health

Specific search queries are detailed in Annex 1: Search terms utilised per evidence database.

A total of 252 sources were identified in the global literature search, with one duplicate reference. All
sources were reviewed for relevance based on the three criteria above. Only sources which matched all
three criteria were included in the final review. This resulted in a final 97 sources in global database
search.

3.1.2. Sierra Leone evidence database search

A search of available literature was conducted in January 2019. A set of key search terms were used
throughout various research search engines and repositories (Pubmed, SCIE, SSRN, Popline, UCL
Discovery, OAISTER, NICE, Google Scholar, TRIP, AJOL, Eldis). Specific search queries were constructed
per database to fit to their design, but all consisted of two conceptual components:

Sierra Leone + disability

Sierra Leone + mental health

Specific search queries are detailed in Annex 1: Search terms utilised per evidence database.

A total of 2,248 sources were identified for the Sierra Leone-specific search, with 342 duplicate
references. All sources were reviewed for relevance based on three concepts:

1. PWD in Sierra Leone

2. Health or health needs of PWD, including relating to Free Health Care Initiative (FHCI),
free care, disability or other, in Sierra Leone

7
3. FHCI services, including services for pregnant and lactating mothers, under-fives, free
health care, sexual transmitted infections, pregnant, family planning, or other, in Sierra
Leone

Sources were scored as relevant if at least two out of the three criteria were met. The result was 233
references were deemed relevant based on eligibility criteria.

3.1.3. Additional sources

Additional sources (approximately 500) were compiled through outreach of the research team to local
organisations, in personal repositories, through investigating citations from sources of the database
search, and even additional web searches for specific areas on which the research team felt were not
sufficiently covered by the database search results. This resulted in approximately 175 additional sources
being added to the review.

3.1.4. Review of sources

All sources were reviewed and categorised as relevant either to the global or Sierra Leone-specific
evidence base, with as sub-categories: health status, (unmet) service needs, and access to health
services, including specific to each of the Levesque dimensions of access. 2 This categorisation of the
sources is reflected in the structure of the presentation of the results.

Promising interventions from the sources were reviewed as well. The purpose of the inclusion of
promising interventions is to identify intervention models as potential case studies, as well as to
recommend for implementation. Intervention models proven to work in the Sierra Leonean context are
preferable; however, if gaps remain in what has been implemented in this context, intervention models
from the global review which have been implemented in similar contexts may be equally as useful for
this purpose. Therefore, while global interventions are presented in the results, only ones which address
gaps in Sierra Leone-specific intervention models are presented in the body of the report. The remainder
are presented in as annex (see Annex 2: Promising Interventions for Increasing Access to Health Services
for PWD – Global, page 103).

RESULTS

The results of the literature review below. First, prevalence estimates on disability and provide context
on policy and action towards preventing and addressing disability-related needs are introduced. Then,
PWD health status, service needs and utilisation of health services are covered. Access to health services
for PWD using the dimensions of access are then presented. In each section, the global evidence are
introduced first, followed by the Sierra Leone-specific findings. Finally, promising interventions for
increasing access to health services for PWD are presented.

4.1. Persons with disability prevalence estimates

4.1.1. Global prevalence of disability

Globally, persons living with some form of disability are estimated to be over one billion, representing
approximately 15% of the world’s population living with a severe or moderate disability. Between 110
to 190 million persons 15 years and older have significant difficulties in functioning. As the global
population ages and chronic health conditions increase, rates of disability are increasing over time. 26

8
PWD are concentrated in low- and middle-income countries (LMICs), with higher prevalence of disability
in African and South East Asia Region as compared to European and Americas regions, see Figure 3. 27

Figure 3: Global disability in absolute numbers and prevalence by age and region (source: Kuper & Heydt 2019 28)

9
4.1.2. Prevalence and causes of Disability in Sierra Leone
Table 2 Disability amongst the population of Sierra Leone,
Prevalence of Disability in Sierra Leone 2015 Census

Young Total
The most recent prevalence estimates of people population
disability in Sierra Leone are 2.4% reported by (0-35 (all ages)
the 2004 National Census, 29 1.3% reported by years)
the 2015 National Census, 30 and 9.3% % %
reported by the 2017 Multi-Indicator Cluster Prevalence 0.8 1.3
Survey. 31 Age groups
0-9 years 0.5
The 2004 Census estimated prevalence of 10-14 years 0.7
disability in Sierra Leone as 2.6% and 2.2% 15-19 years 0.8
among males and females respectively, and 20-24 years 0.9
25-35 years 1.3
higher prevalence of disability in the South
Disability classification
and East regions. Disability increased in higher
Physical disability (polio) 27.3 9.8
age groups. 29
Physical disability 10.0 3.7
(amputee)
The 2015 census found a prevalence of Blind / visually impaired 5.9 5.2
disability in the population of 1.3% and in Partially sighted 8.5 7.2
young persons (15-35 years) 0.8% (See Table Deaf 7.8 3.5
2 Disability amongst the population of Sierra Partially deaf 7.8 2.6
Leone, 2015 Census), with the highest Speech difficulty 5.7 1.7
proportions of PWD found in the North and Mute 5.8 1.7
East Regions. The 2015 Census reported that Mental difficulties 6.6 2.1
67% of PWD live in rural areas. 30 Spinal injury 2.4 1.4
Psychiatric disability 1.3 0.7
The 2017 MICS estimates a total disability Epileptic 3.9 1.2
prevalence of 9.3%, with 17.5% in adolescents Rheumatism 0.9 1.0
Albinism 0.7 0.3
10-19 years, and 28.7% in young adolescents
Kyphoscoliosis 0.9 0.3
10-14 years. In fact, the highest proportion of
Other disability 6.8 3.8
disability is in young adolescents. Male Source: 2015 Census30
disability tends to be higher in younger age
ranges and lower in older age ranges. 31 (See
Table 3 Functional disability amongst the population of Sierra Leone, MICS 2017 )

However, these results need to be understood in relation to the approach to measurement. In both the
2004 and 2015 National Censuses, the enumerator would ask the respondent for the household if each
person residing in the household has a disability or not. If s/he answers ‘yes’, then the enumerator asks
what type of impairment the person has. This type of approach towards disability measurement has
been critiqued due the impact of stigma and cultural perceptions of disability. 32 However, the 2017
MICS utilised the WG short form questions, both for adults and for children (2 years and above). This
method allows for the measurement of functional limitations of people with the same impairment, an
estimation of continuum of functional difficulties in the population, and maximises the information that
can be gleaned at a low cost. 32 Estimates from the census data are also viewed as problematic due to
inconsistencies in how disability is categorised and the focus on severe disabilities. 33 For example the
2004 census estimates approximately 3,000 cases of mental impairment while another study estimated
219,000 children with mild to medium mental impairment. 33

10
 Given Sierra Leone’s recent civil war (year to year)
Table 3 Functional disability amongst the population
which saw widespread physical and sexual violence
of Sierra Leone, MICS 2017
including amputations and other permanent
Male Female Total disabilities as well as Sierra Leone’s ongoing status
% % % as a low income country at the bottom of the
Prevalence 12.4 7.5 9.3 human development index, 2.4% 2004 estimate
Age groups largely viewed as a gross underestimate. 34,35 Other
2-9 years 19.4 17.9 18.7 estimates based on limited evidence suggest
10-14 years 31.8 25.7 28.7 prevalence rates of 7-10% with some as high as
15-19 years 12.2 7.7 9.3 24%. 36–39
20-24 years 1.5 0.9 1.1
25-34 years 0.6 1.3 1.1 In Sierra Leone, disability is defined in the Persons
35-44 years 0.9 1.7 1.5 with Disability Act (GoSL, 2011) as “a physical,
45-49 years 2.5 3.6 3.2
sensory, mental or other impairment which has a
Source: MICS 201731
substantial long-term adverse effect on a person’s
ability to carry out normal day-to-day activities.”
While Government of Sierra Leone institutions,
including the Ministry of Social Welfare, Gender,
and Children Affairs (MoSWGCA), currently use this definition, there are efforts by the MoSWGCA at
reforming the definition to one based on functioning, such as the ICF definition (see page 6).

Causes of Disability in Sierra Leone

In the 2014 census, the most common type of disability reported was ‘limited use of legs’ and ‘sight
difficulty,’ while both illness and congenital disability were the most reported causes. 29 Similarly, in the
2015 census, the most common types of disability reported was physical disability caused by polio
(21.8%) and partial sightedness (15.2%). The most common causes of disability were diseases or illnesses
(40.5%) and congenital (16.2%). 30

Leading causes of years lived with disability in Sierra Leone for 2017 are dietary iron deficiency, headache
disorders, low back pain, depressive disorders and onchocerciasis. 40 60% of disability-adjusted life years
(DALYs) in Sierra Leone is a result of communicable disease. 41,42 It has been estimated that 30% of
disability in Sierra Leone is related to mental illness. 38

Measles, meningitis and maternal rubella all lead to sensorineural hearing loss in children whereas
neglected tropical diseases, such as schistosomiasis and onchocerciasis cause severe disability including
blindness. 43–47 Lassa fever, endemic to Sierra Leone, is also a cause of hearing loss in children. 48

4.2. Policy Environment and Action for PWD

4.2.1. Global Policy Environment and Action for PWD

Human and PWD Rights

The 1948 United Nations Universal Declaration of Human Rights 49 has the principal that “all human
beings are born free and equal in dignity and rights.” It’s Article 25.1 specifically mentions disability:
“Everyone has the right to a standard of living adequate for the health and well-being of himself and
of his family, including food, clothing, housing and medical care and necessary social services, and the
right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack
of livelihood in circumstances beyond his control.”

11
In an attempt to draw more attention to the rights and plight of PWD the United Nations in 1981
established a year of the PWD and 3rd December each year as the International Day of People with
Disabilities. 50,51 This was followed by the United Nations Decade of PWD from 1983 to 1992. In 1992
the World Mental Health Day was also established (10 October). 52 The Standard Rules on the
Equalization of Opportunities for Persons with Disabilities were adopted by the UN in 1993, 53
including rules on Medical care and Rehabilitation and, among the target area for equal participation,
a rule on Accessibility.

The 1990 Caracas Declaration of Mental Health and Human Rights was one of the first attempts to
advocate for a restructuring of psychiatric care ensuring both patient rights and strengthening linkages
with primary care. 54 Further attention was drawn to mental health, including its social determinants,
public health perspective and basic service and system data, by the 1995 World Mental Health Report,
55
the first-time World Health Report that focussed on mental health (2001) 56 and the first ever WHO
Mental Health Atlas (2001). 57 The 2016 Global ‘Out of the Shadows’ meeting recognised mental health
also as a global development priority, not just a health issue. 58

Inclusion is the guiding principle of the 2006 UN Convention on the Rights of Persons with Disability
(UNCRPD) and its Optional Protocol 13,59, which implementation is overseen by the Committee on the
Rights of Persons with Disabilities. The UNCRPD defines PWD as “those who have long-term physical,
mental, intellectual or sensory impairments which in interaction with various barriers may hinder their
full and effective participation in society on an equal basis with others.”, thus including people living
with mental disabilities. Several articles of the Convention and its optional protocol have direct
relevance to PWD’s “access to gender-sensitive health services, including health-related
rehabilitation.” This convention increased the understanding of disability as a human rights issue and
a development issue, but also the awareness on lacking information on disability issues, which was
partially solved through the 2011 World Report on Disability. 60 The recommendations of this report
were endorsed by the 2013 World Health Assembly, including the recommendation to remove barriers
and make existing health systems more inclusive and accessible to PWD, with recommended actions
in the areas of policy and legislation, financing and affordability, service delivery, human resources and
data and research. 61

The Protocol to the African Charter on Human and People’s Rights of Persons with Disabilities in
Africa, adopted by the African Union in 2018, contains the right for every individual to ‘have the best
attainable state physical and mental health’. The Charter has accessibility (article 15) as one of its
general principles, as are equality of opportunity and equality between men and women (article 6 –
right to equality). There are special articles on Right to Health (Article 17) and Habilitation and
Rehabilitation (Article 18). 62

Sustainable Development Goals (SDGs), Universal Health Coverage (UHC) and Equity

The Millennium Development Goals (MDGs) did not include persons with disabilities and mental
illness. The 2013 High-level meeting of the UN Assembly on development goals and PWD agreed to
ensure accessibility and inclusion of PWD in all aspects of development efforts, i.e. a disability-
inclusive development agenda. 63 This informed the development of disability-inclusive Sustainable
Development Goals (SDGs). The SDGs now contain seven targets that specifically mention PWD,
while all other targets should be disaggregated, where relevant, by disability. 64

The health SDG (SDG 3) does not specifically PWD but however mentions universal access to Sexual
and Reproductive Health services including family planning (SDG 3.7) and universal health coverage
(SDG 3.8). Coverage of essential health services under indicator SDG 3.8.1. is not only determined for
the general population but also among the most disadvantaged population, such as PWD. 13 Mental

12
Health, as an important cause of disability, is now also included in the global goals. There is now a
special attention for promoting mental health and well-being (SDG 3.4) and strengthening the
prevention and treatment of substance abuse (SDG 3.5). 64

Universal Health Coverage (UHC) links and cuts through all health-related SDGs. UHC is defined as
the possibility for “all people and communities to use the promotive, preventive, curative,
rehabilitative and palliative health services they need, of sufficient quality to be effective, while also
ensuring that the use of these services does not expose the user to financial hardship.” 65

Equity is an essential component of the post-2015 development agenda and UHC. A 2016 WHO
handbook on national health strategies notes the importance of extending access to health services
based on actual health needs (which might differ for PWD and other groups) and proactive intersectoral
planning to address (social determinants of) health inequities. 66 Similarly, the WHO Global strategy on
people-centred and integrated health services stresses the importance of an equity focus to address
not only immediate factors of inequitable service utilisation but also more fundamental social
determinants. 67

Global disability and mental health action

The WHO Global Disability Action Plan 2014-2021 recognises disability as a global public health issue,
a human rights issue and a development priority and supports the implementation of measures to meet
the rights of PWD as included in the CRPWD. 68 The Action Plan aims to contribute to achieving optimal
health, functioning, well-being and human rights for all PWD. The Action Plan has as the first objective
to remove barriers and improve access to health services and programmes for PWD, while the second
objective aims to strengthen (re)habilitation.

WHO member states adopted the first ever Mental Health Action Plan 2013-2020 which aims to
achieve equitable access to quality, culturally appropriate health and social care building on principles
like UHC, human rights, evidence-based practice and a life course approach. 69 Next to increased
attention within UN organisations, several other global health development partners have also
developed disability-inclusive (including mental health-inclusive) policy documents.

DFID developed in 2018 a Strategy for Disability Inclusive Development which includes the vision of a
world where no-one, including PWD, is left behind. One the intended outcomes of this strategy is equal
access for all PWDs to quality health care through UHC, disability-inclusive infrastructure and
environments, accessible and affordable appropriate assistive technology, and crossing attitudinal and
institutional barriers. A specific outcome in the strategy is obtaining “evidence-based understanding of
the scale and nature of disability-related exclusion and what works to improve outcomes for people
with disabilities”. 25

On 24 July 2018, DFID hosted together with the International Disability Alliance and the Government
of Kenya the first-ever Global Disability Summit in London, 70 which developed a joint charter for
change with commitments, among others, on increasing access and ‘leaving no-one behind’ also for
health (services). 71

The World Bank developed a Disability Inclusion and Accountability Framework in 2018 which
contains accessibility as one of the four main principles and a full chapter on disability-inclusive health
care. 72

The Global Fund recognizes among its key populations’ vulnerable populations, including adolescent
girls, young women and PWD. 73
13
The Movement for Global Mental Health (MGMH, established after a call for action in the first Lancet
series on mental health, aims to improve mental health services especially in LMICs based on evidence
and human rights. 74

Guidelines for PWD and mental health service delivery

Access to (Re-)habilitation for PWD has gotten renewed attention with accompanying guidelines and
initiatives, some with a special focus on less-resources settings and community-level. 75,76 The Global
Co-operative on Assistive Health Technology (GATE) strives for affordable and high-quality assistive
technologies to be available for all those in need. 77 In 2017, WHO hosted a meeting – Rehabilitation
2030 call for action - highlighting the issue of the substantial unmet need for rehabilitation around the
world, and the lack of data on access to rehabilitation. 78 This resulted in the development of health
system wide guide to strengthen rehabilitation, considering aspects like accessibility, availability,
acceptability, affordability and quality. 79

From 2008 onwards a set of guidelines and tools have been developed by WHO and its partners to
scale up care for mental conditions, including the mental health Action Program (mhGAP) and advise
on how to strengthen mental health systems/services and integrate them into primary care. 80–82

As part of WHO QualityRights initiative, the WHO QualityRights tool kit was developed in 2012 to
support assessment and improvement of the quality and human rights of mental health and social
care facilities. 83 Under the same initiative the WHO MiNDbank: More Inclusiveness Needed in
Disability and Development – an online platform with among others resources on mental health and
disability was established. 84

The Disease Control Priorities-3 publication contains recommendations for cost-effective care
packages for mental disorders but also other causes of disability. 85

Increasingly RMNCAH service guidelines include disability issues. Already in 2009 WHO and UNFPA
developed a guidance note on promoting SRH for PWD. 86 The guidance note recommends action in 5
areas: establishing partnerships, raising awareness and increasing accessibility in-house, disability-
inclusive SRH programming, disability-inclusive legislation, regulations and budgets and promoting
research on SRH of PWD.

The Global Strategy for Women’s, Children’s and Adolescents’ health 2016-2030 takes into account
not only the causes and effects of disability but also its prevention and access for PWD. 87

Global guidance for general and RMNCAH services takes more and more into account the extra
barriers that adolescent PWD might face and is also reflected in service standards and assessment
tools. 88

Recent general standards and assessments for Adolescent-friendly health services (AFHS) looked into
equitability; which means that all adolescents, also the ones living with a disability, should be able to
obtain the health services they need. 89–91

Recognizing the neglected needs of PWD several standards and assessments have been developed
recently for AFHS and adolescent SRH for PWD and other disadvantaged/vulnerable adolescents. 92,93

Monitoring of equitable access for PWD

14
Despite the endorsement of the 2001 International Classification of functioning, disability and health
(ICF) by all 191 WHO member states and the development of the related WHO Disability Assessment
Schedule (WHODAS 2.0) there is still a serious lack of disability data. 94–96 The WHODAS is a practical
generic tool that is able to measure health and disability at both at population and individual level
through assessing the level of functioning in 6 domains of life: cognition, mobility, self-care, getting
along, life activities and participation. However, WHODAS has likely been under-used also due to the
lack of specific global and national indicators for disability aspects and the lack of disaggregation by
disability of global and national universal indicators.

The Washington Group questions The Washington Group on Disability Statistics (WG), formed in 2001,
set out to develop a set of disability data collection tools suitable for censuses and national surveys to
provide basic necessary information on disability that is comparable throughout the world. The group
has developed a short set of 6 questions suitable (short form) designed with a functional approach, in
line with the WHO ICF, as well as an adult long form and child functioning versions. The WG questions
are designed for use in a census or survey in order to disaggregate the population by disability status,
as opposed to serving a diagnostic function. The WG questions are emerging as the global choice for
disability measurement, with over 65 counties having used the tools. In addition, key global actors
have endorsed the WG questions, including the UK Department for International Development,
UNICEF, United Nations Development Programme, International Labour Organization, World Health
Organisation, Office of the High Commissioner for Human Rights, International Disability Alliance and
International Disability and Development Consortium.23,97–99

The recent WHO Global Disability Action Plan 2014-2021 68 has as third and last objective the
strengthening of disability data collection and disability research.

WHO recently developed Model Disability survey, which has been implemented in several countries
already. 100

Increasingly, specific disability indicators are proposed, such as in the SDGs mentioned above and in
the 2018 Global Reference List of 100 core health indicators. 101 Although not part of the 100 core
health indicators, there are two proposed additional indicators that deal with disability: ‘Cataract
surgical rate and coverage’ and ‘Use of assistive devices among people with disabilities’. These two
indicators were also proposed in recent UHC monitoring publications, which also recognize that some
coverage indicators are difficult to measure. 102,103 The outcome indicator ‘Coverage of care for
persons with disabilities’ and the impact indicator ‘Proportion of older adults with disability (years
lived with disability)’ have also been proposed for UHC monitoring. 104

Several other recent documents, including the SDG monitoring framework above and the monitoring
framework for the Global Strategy for Women’s, Children’s and Adolescents’ health 2016-2030 87,105
now include disaggregation by disability, while advocacy for further disaggregation continues by the
Disability Sector. 106

In recent years there has been more attention to monitoring equitability of service provision and
utilisation, including proposed health (service) equity indicators. 107,108

Special publications on mental health including five WHO Mental Health Atlases (2001, 2005, 20011,
2014, 2018) 109–113 and two Lancet Global Mental Health Series (2007, 2018) 114 provide valuable
mental health (service and system) data.

15
4.2.2. Sierra Leone Policy Environment and Action for PWD

Human and PWD rights

Sierra Leone is a signatory to several international human rights treaties, including the 1948 United
Nations Universal Declaration of Human Rights, the 1981 African Union African Charter on Human and
Peoples’ Rights and the 1990 African Charter on the Rights and Welfare of the Child. 49,62,115

The United Nations Convention on the rights of persons with disabilities (UNCRPD), 59 discussed
in detail above, was signed by Sierra Leone on 30 March 2007 and ratified on 4th October 2010. Sierra
Leone is a signatory to the accompanying Optional Protocol. Other international treaties that deal in
part with PWD were ratified by Sierra Leone, including the Convention on the Rights of the Child
(CRC) in 1990 and the Convention on the Elimination of All Forms of Discrimination Against
Women (CEDAW) in 1988. However, progress in these areas in relation to PWD has been limited
according to the related UN committees.

The 2011 UN report on Rights of People with Disabilities in Sierra Leone 116 noted largely indirect
discrimination in health access for PWD with transport, accessibility, affordability and communication
obstacles. The report also noted the absence of (allocation of) resources to provide free medical care
to PWD. People with mental /psychosocial disabilities were particularly disadvantaged due to stigma.

The UN CRC committee expressed serious concern in 2016 about, among others, insufficient measures
to ensure that children with disabilities fully enjoy their rights to health (care) and the lack of
comprehensive data on children with disabilities. 117 Based on their observations the UN CEDAW
committee recommended in 2014 that the GoSL adopts special policy measures and programs to
address the particular needs of girls and women with disabilities, including access to health care. 118

The Constitution of Sierra Leone 119 contains protection from discrimination for PWD and the
obligation to actively promote and safeguard the care and welfare of PWD.

The Child Right Act that was enacted in 2007 120 contains a section ‘Treatment of disabled child’ that
contains the right of a disable child to be treated in a dignified manner and the right to special care,
education and training wherever possible to develop his maximum potential and be self-reliant.

The 2011 Persons with Disability Act 53 commits to free medical services in public health facilities for
all PWD, the establishment of the NCPWD with a MOHS representative member, the set-up of a
health board for issuing Permanent Disability Certificates and compulsory screening for early signs of
disability for any child that visits a health centre for medical treatment. In addition, it provides for the
establishment of a ‘National Development Fund’ for PWD, a component of which should support the
cost of assistive devices and related services. 121,122 The National Commission for Persons with
Disabilities (NCPD) has been set-up for sensitisation on the Disability Act 2011 and for capacity
building of the Commission and Disabled Persons Organisations (DPOs). There is a Sierra Leone Union
of Persons with Disability (SLUDI).

The Public Health Act (1960) and its amendment (2004) do not mention mental health or disability.
123,124

The current Health Policy 125,126 recognizes disabilities and mental illness as 2 of the 10 national priority
health problems, although there are no specific strategic areas for them in the policy. A new health
policy is currently in development (2019). The National Health Sector Strategic Plan (NHSSP) 127 only
mentions disability in relation to prevention (Buruli ulcer, leprosy, vaccine-preventable diseases), there
is no special strategy or section for disability. The only rehabilitation that is mentioned is rehabilitative
16
eye services. The NHSSP advocates for new mental health legislation to replace the outdated Lunacy
act. It also has a special section on mental health, aiming to have a sustainable and accessible mental
health system.

The Basic Package of Essential Health Services (BPEHS) 128 only mentions identification, management
and referral for children with disabilities. There is no special section for PWD or rehabilitation, although
it is mentioned that MCH Aides can be trained to provide basic physical rehabilitation services at CHC
level and that hospitals should have two rehabilitation workers. Mental health has a separate section,
with activities for all levels of PHUs and hospitals.

The old Non-Communicable Diseases (NCD) Policy and Strategic Plan 129,130 do not cover disability, and
only mention rehabilitation in general. A new Policy and Strategic Plan will be finalized end of 2019 and
are expected to have sections on disability and rehabilitation.

Mental Health legislation in Sierra Leone was limited to the outdated and inadequate Lunacy Act
first passed in 1902. 131 and the Dangerous Drugs Ordinance of 1926, relevant for substance use
disorders. 132 Mental health policy in Sierra Leone has gained traction in large part to due extensive
advocacy from a coordinated group of stakeholders and providers in the form of the Mental Health
Coalition and other actors. In 2012, a national Mental Health Policy was launched, with an updated
Mental Health Policy and Strategic Plan in the process of finalisation for 2019. 133–135

However, evidence suggest that even important strides have been made in policies and legal mandates
to support PWD, there remains gaps in implementation and monitoring of such provisions, limiting their
impact. 121,136,137

Sustainable Development and UHC

Sustainable Development Goals – Sierra Leone contains specific indicators relating to PWD, but none
relating to health and/or access to health services 138 However, an updated list of indicators does not
contain any mention of PWD, although according to global guidelines these indicators should be, if
relevant, disaggregated by disability status. 139 In fact, in a 2019 report, PWD are not mentioned to be
in the government’s medium term plans to achieve SDG3: Ensure healthy lives and promote well-being
for all at all ages. 138

The Parliamentary Action Group on the Sustainable Development Goals (SDGs) was established by
Parliament to coordinate across the government and partners for action on SDGs. In 2017, the Action
Group signed a Memorandum of Understanding with the Sierra Leone Coalition 2030, a consortium of
non-governmental organisations (NGOs) and civil society organisations (CSOs) focused on
accountability and representation to ‘leave no one behind’ in the SDG process. 140,141

Universal Health Coverage - Sierra Leone is a member and signatory to the UHC2030 Global Compact,
supporting progress towards universal health coverage commit to work together with renewed urgency
to accelerate progress towards UHC, through building and expanding equitable, resilient and
sustainable health system. 142 In a Scoping Visit to Sierra Leone on UHC in June 2019, the WHO and
MoHS aimed to identify key issues and gaps affecting the implementation of priority health
programmes and outline a roadmap on priority actions to facilitate progress towards UHC. Included in
the scoping visit report were the following three priority actions, to: (a) develop a National Health Policy
to address weaknesses in horizontal and vertical coordination in and with the health sector; (b) develop
a National Health Financing Policy and Strategy, including feasibility studies for a National Health
Insurance Scheme; and (c) progressively expand the benefits package of FHCI to include all life cohorts.
143

17
The Agenda for Prosperity 2013-2018 mentions provisions for care for PWD, although no budgetary
provision was made. 144 Although the Agenda for Prosperity and the new National Development Plan
2019-2023 both make mention of PWD, 144,145 disability advocates argue that it does not go far enough
and is presented as an isolated group instead of mainstreamed into the entire plan. 146 Also the health
sector sub-cluster does not contain any reference to disability.

Interventions and services for PWD in Sierra Leone

Government coordination for services provided to PWD in Sierra Leone is split between the Ministry of
Social Welfare, Gender and Children’s Affairs and the Ministry of Health and Sanitation. A challenge of
this dual responsibility is coordination between the two-line ministries. Initiatives involving PWD are
often not integrated, creating difficulty in access, continuity and appropriateness of the services. This
challenge extends from the past to the present in terms of distributing reparations to amputees, 147,148
exclusion of groups from the disarmament, demobilisation and reintegration (DDR) program following
the civil war, 149 integrating children with disabilities into mainstream schools, decentralising services,
building mental health infrastructure.

MoSWGCA’s mission is to “promote and protect the rights of women, children, the aged, persons with
disability, and other vulnerable groups through development and review of policies, advocacy
coordination with stakeholders, building capacity and effective monitoring and evaluation in order to
enhance equity for all” . 150 One of the four Directorates in the ministry, the Directorate of Social
Welfare, is responsible for ensuring protection of and service provision to socially marginalized and
disadvantaged groups and individuals including PWD. 151 A draft version of the Gender Equality and
Women’s Empowerment Policy is awaiting Cabinet approval, after which it will guide the formation of
the National Genders Affairs Commission. In addition, the MoSWGCA is working on the first country
report for Sierra Leone on the status of the implementation of the UN Convention on the Rights of
Persons with Disabilities, expected later in 2019. 152

The Ministry of Health and Sanitation does not have a separate disability directorate, program or unit.
Disability is captured under the Directorate of Non-Communicable Diseases & Mental Health
(DNCD&MH). There are six physiotherapy and rehabilitation units in the country, with plans to expand
to 10 units in the coming years.

Reproductive, Maternal, Neonatal, Child and Adolescent Health (RMNCAH)

policy, strategy and guidelines documents, they remain mostly general statements with only limited
specific mentions of disability and mental health.

The 2017 RMNCAH policy and strategy only mention disability as one of the to be prevented,
detected and treated child age non-communicable diseases, while mental health is only mentioned
under psychosocial support for adolescents and as a risk factor during pregnancy. 153,154 The Sierra
Leone Every Newborn Action Plan only mention disability under research priorities and as
disaggregation option for the indicators, while mental health is only mentioned as psychological
interventions for common perinatal mental disorders. 155

The Family Planning implementation plan (2017) has few PWD mentions, especially on involving PWD
during community engagement and on equal quality, accessibility and availability for all, including
PWD. 156

18
The expired teenage pregnancy strategy (2013) and the National standards for Adolescent and Young
People Friendly Health Services (2011) do not mention disability. 157,158 In the new adolescent
pregnancy and child marriage strategy (2018) there is one PWD education indicator, and some non-
health indicators with disaggregation by disability, but no health indicators related to or
disaggregated by disability. 159

Availability of data on PWD with a focus on access to health services

Past national population/health surveys contained limited information on PWD. More recent surveys
including the 2015 census contain more information, however there is confusion about (application of)
definitions of disability. Service utilization data usually do not contain a disability disaggregation. The
DHIS 2.0 will soon (end of 2019) include a first-ever PWD head count (disaggregated by gender and
age) in its revised data collection tools (ref: personal communication DPPI staff, MOHS).

The lack of data has also been observed by for example the CEDAW committee, which noted that
there is a lack of information in Sierra Leone on the situation of elderly women and women with
disabilities who suffer multiple forms of discrimination. 118

FHCI and Free Care for PWD

 Free Health Care Initiative FHCI

The Free Healthcare Initiative (FHCI), which was launched by the Government of Sierra Leone on April
27, 2010, offers access to a basic package of free health services to pregnant and lactating mothers and
to children under five with the aim to increase access to basic primary healthcare. 160–163 The FHCI
services includes free access to 30 essential medicines, including family planning. However, the FHCI is
not specified in a written policy document, so the specific services and supporting medicines available
for patients varies depending on the implementation of the FHCI. 164

Support from the President, the donor community, and the MOHS were seen as critical success factors
to the planning and launch of this initiative in only five months. While the government committed a
‘large amount of money’ at the time of the launch, the initiative remains donor dependent, with up to
80% of its financing coming directly from sources outside of the Government of Sierra Leone. 165–167

Since 2017, the President is quoted as professing that FHCI services are offered to the ‘physically
challenged and the aged.’ 168 Government officials, such as the President or the Health Minister, have
been reported to have made statements about FHCI availability for the following groups: Ebola survivors
(EVDS), including specialised eye care and essential medicines to treat post-Ebola sequelae; 169–171 PWD;
171,172
‘all vulnerable groups’ or the ‘disadvantaged’; 169,172 and even children attending schools, including
contraceptive services. 170,172,173

In 2015, civil society actors were advocating for the FHCI to be codified into law and to be included in
the review of the constitution. 174,175 In April 2016, EVDS in Sierra Leone protested for their right to access
free healthcare services under the FHCI. 176,177

However, despite these efforts, anecdotal evidence exists that these groups have yet to access free
services on a consistent basis. For example, an advocate for person with visual impairments stated:
“There is no free health care for disabled people despite the pronouncement made by President
Koroma.” 171 And while the FHCI has yet to be codified into law, as mentioned above (see page 16), the

19
Persons with Disability Act commits to providing free medical services in public health institutions for
every PWD and compulsory disability screening for children. 178

 Comprehensive Programme for Ebola Survivors (CPES)

Persons surviving Ebola Virus Disease (EVDS) during the 2014-2016 outbreak are estimated between
3,000-4,000 persons nationwide. 179–181 While EVDS were served by a clinics specifically set up for their
care, such speciality clinics for EVDS care were closing in 2016. 148,182–187 In 2016, the Comprehensive
Program for Ebola Survivors (CPES), jointly led by the MOHS and the MoSWGCA, aimed to ensure that
EVDS can access social and medical services under FHCI. 188 Under CPES, EVDS (including children) are
provided with free primary health care at public health facilities. CPES supports referral pathways from
the community to national levels, including free transportation and housing for all EVDS referred for
specialised care services. 122,189 However, with donor funding wrapping up in 2018, sustainability of the
CPES programme is uncertain. 180

 Sierra Leone Social Health Insurance (SLeSHI)

The Social Leone Social Health Insurance (SLeSHI) act contains the following exempted categories:
children under 12 years; persons requiring antenatal, child delivery and postnatal care; persons with
mental disorders; persons classified as disabled; persons identified as indigent under the laws of Sierra
Leone and Sierra Leoneans who have attained the age of 65. 190 SLeSHI is in set up phase at the moment,
with an office in the National Social Health Insurance Scheme (NASSIT) building, and the MoHS is
working to develop an evaluation plan. 191 In 2019, the SLeSHI technical committee oversaw a study on
willingness-to-pay for health insurance in the informal sector. 192

 Universal Health Coverage

Sierra Leone is a member and signatory to the UHC2030 Global Compact, supporting progress towards
universal health coverage commit to work together with renewed urgency to accelerate progress
towards UHC, through building and expanding equitable, resilient and sustainable health system. 142 In
a Scoping Visit to Sierra Leone on UHC in June 2019, the WHO and MoHS aimed to identify key issues
and gaps affecting the implementation of priority health programmes and outline a roadmap on priority
actions to facilitate progress towards UHC. Included in the scoping visit report were the following three
priority actions, to: (a) develop a National Health Policy to address weaknesses in horizontal and vertical
coordination in and with the health sector; (b) develop a National Health Financing Policy and Strategy,
including feasibility studies for a National Health Insurance Scheme; and (c) progressively expand the
benefits package of FHCI to include all life cohorts. 143

 Financing for free care

In a review of social protection in Sierra Leone, the World Bank called for improvement in the
institutional and legal framework of persons with disability and improvement in financing for programs.
148
It has been estimated that providing a basic package of mental health services in Sierra Leone would
cost approximately USD 11 million annually. 193 This would still need to be funded in large part by
external donors. FHCI while vital for providing services to women, children and PWD at a low cost, is
also dependent on donor funding as domestic resources are currently insufficient to fund this initiative.
194
In order to increase domestic resources to fund the FHCI and maintain minimal out of pocket costs
to the patient, tax revenue collection as part of a larger health financing strategy is crucial. 194–196

 Mental Health Care

Currently, there are two Sierra Leonean psychiatrists (one at Kissy Psychiatric and the other at Military
34 hospitals) and mental health nurses deployed at each district-level hospital and Connaught hospital,

20
the main tertiary general referral hospital in Freetown. 133 While there is limited evidence on access to
mental health, psychosocial and psychiatric services, anecdotally, access is low. 38

 Non-Governmental Organisation Programmes

In order to support the GoSL as it grapples with the challenges of providing services in a limited resource
setting, local and international NGOs and universities have partnered with communities to implement
community based interventions and research to help fill and inform service gaps in mental health in
emergency and non-emergency periods, 197–210 physical rehabilitation services, 211–215 reproductive
health, 212,216,217 and continued legislative reform. 38,218

Despite this support from independent organisations, these programs are often time and content bound
to the direction of the financial donor. While short term benefits might be documented, long term
sustainability is rarely proven. 38 Some argue that the funding and administrative cycles of these NGOs
has created a viscous cycle of dependence instead of sustainable improvement in the lives of PWD.
219,220

4.3. Health Status of PWD

4.3.1. Global Health Status of PWD

In general, PWD have poorer overall health compared to those without disability. 60 PWD have a range
of primary, secondary and co-morbid conditions. Primary conditions are the possible starting points for
impairments which may increase over time due to the aging process. For example, PWD with chronic
diseases (including cancer, diabetes mellitus, osteoporosis, arthritis, ischaemic heart disease, stroke,
asthma, chronic pulmonary disorder (COPD) or depression) can experience prolonged periods of illness
with some level of functional impairment or disability, and often poor physical functioning and
emotional wellbeing. 221–223

Secondary conditions are those that presuppose the existence of a primary condition, such as
depression, pain, or osteoporosis. Co-morbid conditions are additional condition that are unrelated but
co-exist alongside the primary condition. PWD may be at higher risk for and earlier onset of developing
co-morbidities due to behavioural factors, such as physical inactivity, smoking, alcohol consumption,
and recreational drug use. In general, PWD have higher rates of such risky behaviours. 60 PWD may also
be at higher risk of developing chronic health conditions, such as high blood pressure, cardiovascular
illness, and diabetes. For example, PWD are three times more likely to develop diabetes. 224–226 PWD are
more likely to abuse substances than their counterparts 227; more likely to have poor mental health
225,228
; and have high rates of suicidal ideation. 229

Infectious diseases may be primary conditions or co-morbidities. PWD may be at higher risk for
infectious disease as a co-morbidity. 230 Such diseases, including HIV, malaria, polio, leprosy, and
trachoma, account for 9% of years lived with impairment worldwide. 60 PWD both perceive themselves
as vulnerable to HIV transmission 231 and are at a higher risk of HIV transmission; 232 they are twice as
likely to contract HIV/AIDS as compared to persons living without disability. 233

PWD can have both primary and secondary conditions which may affect their wellbeing and functioning.
For example, PWD with SMI, such as schizophrenia or bipolar disorder, has been found to have a twofold
to threefold increased risk of premature mortality 234,235 PWD with mental illness have a lower life
expectancy and worse physical health. 236–238 PWD with SMI often suffer from preventable or treatable

21
physical illnesses such as cardiovascular and respiratory diseases 236–238 which are related to risk
behaviours including physical inactivity, poor diet and smoking 236,239–241 In fact, cardiovascular disease
and cancer are the first and second leading causes of death, respectively, in PWD with SMI. 234,242,243.
Furthermore, even though cancer incidence is the same for people with SMI and those without, cancer-
related mortality is higher for people with SMI 234,244,245 Other comorbidities for people with SMI include
diabetes, metabolic syndrome, Tuberculosis, HIV, osteoporosis, poor dentition, impaired lung function,
sexual dysfunction and obstetrical complications. 234,242,246,247

Paediatric PWD had five times greater odds of becoming seriously ill in the last year 248 and twice as
likely to be malnourished or die in childhood as compared to children living without disability. 249,250
PWD children are 10 times more likely to have suffered a serious illness in the past 12 months 248 and
are twice as likely to suffer from severe diarrhoea. 251

Stigma, prejudice, and denial of access to rights make it more likely that PWD live in poverty, which can
have multimodal relationship with health status. 86,252 Poverty and disability can be mutually reinforcing,
where one can contribution to the other and vice-versa. This can occur through different mechanisms,
such as poor living conditions, lifestyle and access to services. 27,251 For example, PWD are 30% more
likely to live in areas with environmental risks, such as toxins. 253 Overall, PWD are more likely to have
poor health status due to higher levels of poverty and exclusion. 28

PWD are at a greater risk of violence, both physical and sexual, with particular risk for those who are
institutionalised, intimate partners, and/or adolescents. 60,254 Prevalence estimates of any (physical,
sexual, or intimate partner) recent violence were highest in individuals with mental illnesses (about 25%)
and lowest in those with nonspecific impairments (3%).255

Female PWD are three times more likely to experience domestic abuse than women living without
disability, with over 50% of women PWD having the experience. In addition to violence, Female PWD
can experience abuse specific to their disability, such as the withholding of assistive devices or refusing
to support basic care. About a third of domestic abuse starts in the perinatal period. 256 PWD are twice
as likely to have pre-term births and low weight babies 257 and have a 1.5 higher prevalence of still
births. 228,258

Adolescents with disabilities are 3-4 times more likely to experience violence, with those with intellectual
disability at heightened risk, and are 53% more likely to experience significant illness or injury. 259,260
Studies have shown that adolescents with disabilities are at risk of undernutrition due to poverty. 260
Due to erroneous beliefs about PWD sexuality, PWD of both genders are often assumed to be virgins,
and therefore may targeted for sexual abuse motivated by “virgin cleansing,” based on the belief that
sex with a virgin person can cure AIDS. 231,261 In addition, PWD have been reported to be less able to
report abuse due to an environment of isolation or overprotection by family members. 231,261–263

Finally, certain groups may be more likely to develop disability due to their intersection of vulnerability
and exposure to risk factors. For example, children and youth who are homeless or incarcerated have a
greater risk of developing mental health impairment, including suicide psychiatric disorders compared
to any other group. 264,265 Estimates suggest that nearly two-thirds of homeless youth meet criteria for
a psychiatric disorder. 264,266 While no estimates exist on the number of homeless children, they are
estimated to be in the hundreds of millions. 264,267

4.3.2. Health Status of PWD in Sierra Leone

Mental illness alone is estimated to account for 13% of total burden of disease and 31% of all health-
related disabilities 38. Mental illness in Sierra Leone is often categorised in the context of humanitarian
emergencies, particularly the civil war, and the more recent Ebola outbreak. 38 Particular focus has been
22
put on victimhood and perpetrators of violence during the civil war encompassing affected children and
youth and the transitional justice mechanism of the Special Court of Sierra Leone. 36,268–271 Areas of focus
in mental health include forgiveness, reconciliation, post-traumatic stress disorder, psychological
trauma and distress, and other mental health and development outcomes. 37,38,272–277 Studies with
former child soldiers give some indication that mental health and other development outcomes of war
affected youth are influenced by their current peer, family, community and economic support and other
daily stressors in Sierra Leone’s harsh post conflict environment. 278–280 Some studies have shown that
the civil conflict and post conflict stressors also affect youth who were not directly involved as
combatants or victims of violence in the civil war or were born after the war. 281

Perhaps the most visible group of PWD are persons who suffered amputation during the war as extreme
acts of brutal violence conducted by rebel forces. 282 This group of people has been defined by their
physical injury and in some cases self-identified with this definition in order to access resources and
much needed services. 283,284

EVDS may develop neurological sequelae, including persistent headaches and memory loss,
neurological abnormalities, depression, insomnia, fatigue, anxiety and post-traumatic stress disorder.
Researchers have hypothesised that such sequelae constellations are a ‘Post-Ebola Syndrome,’ including
common indicators of eye, joint, and neurological sequelae. 200,207,285–297

In Sierra Leone, EVDS have been reported to suffer from arthralgias (76%), new ocular symptoms (60%),
uveitis (18%), and auditory symptoms (24%). 298 EVDS have been found to suffer more functional
disability (78%) than their close contacts (11%), with limited functionality in relation to vision, mobility,
cognition and affect. 285 Finally, it has been reported that in rare cases, EVDS may suffer from EVD
relapses even after recovery. 287

Finally, PWD, including children, in Sierra Leone are at a heightened risk for violence. 299

4.4. Health Services Needs and Utilisation of PWD

4.4.1. Global Health Services Needs and Utilisation of PWD

In general, PWD have greater health (service) needs than persons with no disability, including for
prevention, diagnosis and treatment services. 28,60,251,300 PWD require general health services, which are
comparable to the needs of the general population, in addition to services specific to their impairment.
301

Despite seeking more healthcare, PWD have lower access to services, particularly in LMICs, as compared
to persons living without disability. 60, 26 The World Disability Report presented results from an analysis
of the World Health Survey 2010-2014 data on access to general health services. PWD sought more
care than persons without disability as well as reported needing more care, but not receiving it. Older
PWD tended to have less unmet care needs than younger PWD (those under 60 years). 60

Access to services for PWD may vary across different dimensions of disability and social determinants
of health. For example, girls with hearing impairments who were working were 20 times more likely to
receive services they wanted. 302 Access decreases with as age, being female, and severity of disability
increase. Gender is a factor for PWD accessing health services globally, with women facing more barriers
to accessing care. 28 Higher levels of educations and sharing a household with no other members living
with disability have an association with increased access to health services amongst PWD. 303,304

23
Chronic conditions, particularly mental health conditions, are associated with less access to care.
However, with additional risk factors, such as income and immigration status, is associated with a greater
likelihood of unmet needs.

General Health Services

Generally, use of general health services is higher in PWD, however, the evidence varies across settings
and specific populations. In a systematic review on utilisation of general healthcare services by PWD,
eleven studies found higher utilisation of general health services among PWD compared to persons
with no disability. 251,305–314 However, in the same review, one study found no significant difference 315,316
and two found lower utilisation among PWD. 251,317,318

In a systematic review on PWD use of general health services, all studies found that inpatient hospital
admission was significantly higher amongst PWD compared to people without disabilities.
60,251,305,310,311,313,319–324

PWD are sexually active and fertile, and therefore have RMNCAH care needs. Additionally, adolescent
PWD may sexually debut earlier than their counterparts, and, thus, may require these services earlier
than their counterparts. 231 Pregnancies of PWD are often classified as high-risk pregnancies and require
more antenatal visits and scans. PWD have been found to be at higher risk for delivering preterm babies
compared with women living without disability, particularly those with physical disability, mental health
problems, learning disability and with multiple disabilities. In addition, babies born to PWD were
significantly less likely to be breast fed at the time of hospital discharge compared with women living
without disability. 325

However, despite such need for SRH services, PWD are less likely to use reversible contraception, 326
even though PWD of both sexes are more vulnerable to forced sterilisation. 327–329 PWD are also less
likely to seek antenatal care. 251,300 However, in a study comparing access across different types of
impairment, women with a physical disability accessed antenatal care similarly to those with no
disability, but those with a sensory disability were significantly less likely to do so. 325 Another study
found that the greater the number of functional limitations an individual reported, the less likely she
was to receive preventive services, such as a mammogram or Pap smear, thus concluding that difficulties
with access to primary and preventive care increased with severity of disability. 330

Disability-Specific Services

For disability-specific services, PWD, depending on their impairment, may require specialised medical
treatment or rehabilitation services, such as occupational therapy, psychological care, and/or assistive
technology. 60 While evidence on access to rehabilitation is limited, there is anecdotal evidence that
access is low among people with disabilities and that there is limited capacity to meet the demand for
services in LMICs. 251,300 In LMICs, it is estimated that there are less than ten skilled rehabilitation
practitioners per 1 million population. 78 In a systematic review on access to rehabilitation services, PWD
with rehabilitation needs varied across countries and type of service but did not tend to increase with
country income group or show a clear pattern by age or location across studies. However, three studies
found lower rehabilitation services coverage among females. 331–333 In a systematic review on PWD
access to rehabilitation services, the authors found no associations between access and country of study,
residence location, or age. However, coverage of assistive devices tended to increase with country
income group, but this association was found to be low, with one study finding a higher proportion of
PWD had access to assistive devices in urban areas. 300

24
PWD are less likely to receive treatment for psychiatric or behavioural issues. 334 Between 76-85% of
persons with serious mental disorders in LMICs received no treatment in the previous year. 26 In a
systematic review on PWD access to rehabilitation services, access to mental health services was ‘quite’
low across studies, except for children with intellectual impairments. The review found with no
associations between access and country, residence location, or age of the study population. 300
However, other studies have found that higher education, higher income, employment, distress level,
age, and facility structure are all associated care seeking for mental health care. 335 Migrant health
populations show lower rates of mental health service uptake that are not explained by less need. 336
Persons in rural settings may have a higher need for services. 337 Older adults have the lowest utilisation
rates amongst adults, 338 which is unexplained by lower need or rates of mental disorder. 336,339–341

PWD may also require assistive devices, which have the ability to improve levels of functioning. Assistive
devices are defined as any equipment that is used to increase or maintain functional capabilities.
Globally, 124 million persons have low vision. Of these, approximately 70 million require low vision care
and the majority reside in developing countries. 342–344 In LMICs, about 0.5% of a population need
prosthetic or orthotic devices, with 1% needing a wheelchair, and 3% would benefiting from using a
hearing aid 75,345–347 In LMICs, only 5-15% of PWD receive supportive devices, 252,348 and less than 3% of
the need for hearing assistive devices are met annually in developing countries. 331,349

Age, gender, type of impairment and socioeconomic status need to be considered when planning and
implementing equitable provision of assistive technologies. 345 Women are less likely to access assistive
devices than men. 60

In a global survey in 2005, 53% of the countries had not initiated programs relating to assistive
technology provision. In these countries, assistive technology provision occurred by NGOs with limited
reach and a narrow scope of assistive products. 350

In a global survey, 35% of countries had no low vision services, therefore zero coverage. Half the
countries in the African and Western Pacific regions had no vision services. Few countries have more
than 10 low vision health professionals per 10 million of population. In many of the countries NGOs
were the main providers and funders of such services. Women, PWD, and rural dwellers are less likely
to access vision services worldwide. 342

PWD may require specialised dental services, which provides additional supports for access and care.
351
For persons with neurological conditions, the recruitment of a family member or carer to supervise
and provide support for daily hygiene and prevention is needed when the individual can no longer
provide self-care. 352 Persons with poor cognitive functioning have a four times higher risk of not using
dental services regularly. 352

Transitional Services

PWD have differential service needs across the life course. Children with disabilities need early
identification and additional support in their early years to allow them to maximise their development
and functioning. Young PWD require support in the transition from paediatric services to adult-focused
care. 353,354 Often this transition may mean differences in the type and origin of services the PWD can
access over time. The aim of transitional services is to support young people with special are needs care
without gaps in services or health insurance coverage. Finally, even after transitioning to adult care,
older adults with disabilities are particularly likely to experience multiple impairments, which may
increase their need for services. 28

25
4.4.2. Services Needs and Utilisation of PWD in Sierra Leone

General Health Services

In Sierra Leone, 16.4% of respondents with severe or very severe disabilities said they have no access to
health care, compared with only 2.3% of respondents living without disability and 7.1% of respondents
living with mild or moderate disabilities. 39 However, persons living with severe disability had less access
to care than persons living without disability. Trani et al. found that PWD women were just as likely to
report having children and a desire for additional children, which infers a need for SRH and maternal
health services. However, a later study found that there were some variations in reported intercourse in
the past 12 months (as a proxy for need for contraception) between PWD with severe disability (58%)
and persons with mild or moderate disability (71%) and persons with no disability (92%). 39,355 Women
PWD were as likely to report use of maternal health care services and use of contraception as women
living without disability. 355 PWD in Sierra Leone are reportedly more likely to have had difficulty in
getting treatment, obtaining information on healthcare and HIV/AIDS prevention and treatment
services, and accessing healthcare campaigns. 356 However, it is important to note that this evidence is
almost a decade old.

In more recent evidence from Sierra Leone, a trend of low access to health services for PWD was
comparable in both urban and rural settings, explained by the fact that access in both areas is
substantially low. 357

A study on the removal of user fees at the point of service in sub-Saharan Africa, including Sierra Leone,
concluded that the removal of such fees increased facility-based deliveries equally across
socioeconomic status. However, it did not reduce inequalities related to household wealth and may
have widen inequalities related to educational status. 358 While this finding is not specific to PWD, it may
be applicable due the wealth and educational status of PWD in Sierra Leone. 359

Unmet need of health services is a common source of morbidity and mortality. In Sierra Leone this is
especially apparent as the country works to reduce a high maternal mortality rate. While lack of needed
obstetric care is a well-documented health access and human rights factor in women’s morbidity and
mortality in Sierra Leone, 360 a growing body of research is addressing unmet surgical need and its effect
on disability prevalence specifically for hernias, urinary continence, musculoskeletal disease and other
surgical disease. 361–364

A MOHS Eye Health Systems Assessment posited that PWD have a higher than average need for
affordable eye health services than the population living without disability. 365

Disability-Specific Services

Estimates on the need for rehabilitation services in Sierra Leone are not available in the literature, but
the need for such services is mentioned for specific groups, including those with physical, sensory,
mental and psychological impairments. 182,211,212,366,367

It is estimated that the treatment gap for mental health illness in Sierra Leone is greater than 99%. The
treatment gap for children under 18 years of age is estimated at 99.8% 368–370. It is important to note
that this estimate does not include treatment provided by traditional healers. Indeed traditional healers
are a significant part of treatment for mental health illness in Sierra Leone 38,371 given the limited
workforce of mental health care workers 372 and cultural and traditional beliefs around effectiveness. 373
Research with war affected youth has highlighted the need for prioritising psychological consequences,
26
daily stressors and reducing stigma in order to increase reintegration and productivity of this affected
group in Sierra Leone. 277,278,374

Other services identified in the literature that were tied to specific types of disability included maternal
syphilis screening, urinary and faecal incontinence due to obstetric fistula, rectal bleeding,
musculoskeletal disease and visual impairment. 375–378

While most countries show gender equal coverage of cataract surgical coverage, Sierra Leone showed
coverage of men as twice as high as that for women (30%, 16% respectively). Cataract surgical
coverage, the proportion of people with bilateral cataract who have received cataract surgery in one
or both eyes, is an indicator not only of ophthalmological surgical care coverage, but of disability
among older adults. Such findings imply a gendered dimension for access to care by the elderly in
Sierra Leone. 102

During and following the Ebola response, retrospective reviews called for mainstreaming of
psychosocial support for health care workers treating Ebola patients, patients with Ebola and their
families, communities hard hit by outbreak and EVDS. This is not only viewed in the context of an Ebola
outbreak but health emergencies in Sierra Leone in general. One study found a greater than 70% rate
of post-traumatic stress disorder (PTSD) symptoms in a general population sampled during the EVD
outbreak. 379 In addition, a need for long-term rehabilitation has been identified for EVDS, due to the
high rates of disability and rare relapse. 285

4.5. Dimensions of Access to Health Services for PWD

As described above, this study utilised the model of Levesque et al. 2 in defining dimensions of access
to and accessibility of health care services. They describe five dimensions of access: availability and
accommodation, affordability, acceptability, appropriateness and approachability (see Table 1:
Dimensions of access 2. Each dimension integrates both supply and demand factors by incorporating
both user and health care service characteristics. Below, findings are organised under the five
dimensions of access. First, global findings are described, then those specific to Sierra Leone.

4.5.1. Approachability
Approachability

Approachability of health services for PWD Globally Supply side: allows health service to
be identified - relates to factors of
 Information transparency, outreach, information,
PWD may not have access to information which can inform their screening.
ability to perceive their own need for services. For example, PWD
may not have heard about particular services 380 or have a lack of Demand side: individual ability to
knowledge on where to go for treatment. 381–390 Similarly, they perceive the need for services –
relates to health literacy, health
may not be aware that they can access services at non-speciality
health centres. 254,301,391,392 For example, persons living with knowledge, and beliefs related to
chronic disease have reported inadequate information provision health and illness.
by health providers (32%) and/or inadequate health
communication (20%).222 Low levels of community awareness
have been reported as a barrier to mental health services access
in Ethiopia, 393 as has been for refractive services in Mozambique. 394

27
PWD have been reported to have a perception of lack of need for rehabilitation services 383–389,395–398
and for regular services. 251,396,399 PWD may also be cared for by family members who do not perceive
need for care. 387 This may be related to thoughts that no treatment is possible or that “nothing could
be done.” 383,385–389,398 Symptoms of illness in PWD may be viewed as disability-related, and therefore
not requiring care. 252,400

PWD living in rural areas have been found to be uninformed about services in their own rural area,
including adolescent mental health services. 401 Ethnic minorities exhibit a lack of knowledge regarding
services for children with developmental disabilities 402 and services for dementia and mental illness.
This includes even local services and pathways to care. 336,403,404

Not only do children who require clubfoot treatment families in LMICs exhibit a lack of awareness of
clinics that offer services, 405 they also lack of knowledge of where to refer for specialist treatment. 406

Where information is available for persons seeking care, it may not be available in accessibility formats
required for some PWD, such as those with sensory or cognitive impairments. 60,252,301,391 For those who
can sense the format in which the information is available, low literacy rates of PWD, such as those in
deaf people, can often times hinder access to written information. 254,301,407 Clinic signboards, bulletins
and billboards can inaccessible to PWD with visual impairments. 231,408

Lack of access to information may affect other domains of access through social support. Often when
PWD can’t access health-related information, they are more reliant on social supports to access health
care. 301,391

Public health promotion and activities do not usually target PWD. For example, women with disabilities
receive less screening for breast and cervical cancer compared with women without disabilities, with
those who are more impaired being less likely to be screened. 409 Persons with intellectual disabilities
are less likely to be screened for obesity. 26 Persons with neurological conditions require new awareness
of the importance of good oral hygiene and care in order prevent dental disease. 352

 Screening

Lack of screening programmes and sufficiency of screening can also limit approachability. Evidence has
pointed to a lack of screening programmes for clubfoot. 406 Furthermore, treatment providers were
found to be unable to inform such families as clubfoot treatment referrers were often unaware of nearby
Ponseti (the preferred non-invasive treatment method for clubfoot) clinics. 405 Another example of lack
of screening for primary conditions is in relation to paediatric cataracts. In a study in Tanzania, village
health workers failed to identify childhood cataracts and misdiagnosed patients. In another study, 88%
of health workers recognised cataract in a picture, 63% knew that it required surgery but only 50%
realised surgery was urgent. 410,411 Limited screening for mental health conditions has also been cited in
the literature. 234

Lack of screening can also prove a barrier to approachability to service for secondary conditions. 234
Mental health staff were found to be reluctant to see physical health screening as their responsibility
leading to resistance to engage in such services 234 Additional factors were lack training in screening
and unawareness of a potential social desirability bias to report positive health behaviours, both leading
to the risk of unreliable results. Mental health service provide reported an inability to interpret physical
health results. 234

Similarly, for accessing assistive technology services, both patients and service providers need to know
about the availability of such services. The health care provider not only needs to provide information
about the existence of particular assistive products, but also about their quality, usability, effectiveness
28
and availability. Finally the information available to the provider needs to be transparent and not
influenced by commercial interests, such as that of the company providing the devices. 350

 Sexuality Views

PWD are systematically denied access to knowledge about sexuality; sexual behaviour and related
services, and are more likely to be excluded from sexual health education programming. 60,231,407,412
Globally, PWD are viewed as asexual or, if seen as sexual beings, requiring external control over their
sexuality and fertility 60,86,175,231. In this way, PWD are not perceived as requiring information on their own
health. Women with spinal cord injuries reported a lack of sexuality information. 413 In a study in
Palestine, one participant stated: “The rights of adolescents with disabilities to know [about their sexual
and reproductive health rights] are especially ignored and undermined by all including by service
providers.” 260

Both adults and adolescents with disabilities are more likely to not be included in sexual health
education programming 26. Schools for persons with special needs are not included in prevention
campaigns or sex education campaigns. 231,414 Despite this, comparatively low rates of condom use and
HIV-testing uptake are reported, thus implicating the likelihood of SRH addition service needs. 231 For
example, PWD are reported to have less knowledge than their counterparts on HIV/AIDS. 231,408,414,415

 Health Literacy / Health Knowledge

An understanding of the need for services can enable acceptability of accessing services. For example,
a lack of felt need for refractive services in Mozambique was cited as a barrier to access. 394 A limited
understanding of the causes, symptoms, and terms for mental illness, in particular dementia, can
influence an understanding of need for services. Signs, such memory problems, unusual behaviour,
social withdrawal, and feelings of depression have frequently been ascribed to normal consequences of
aging. 60,336,416

Perceptions about the severity and urgency of the need may influence families’ perceptions of the need
for care or to prioritise care. 417,418 Different beliefs on the causes of clubfoot or a misperception on its
severity can exert such influence. Cases have been cited where parents discontinued clubfoot treatment
because the foot appeared normal. 406 In visions services, belief in that “nothing more can be done” was
a common barrier globally. 342 Finally, family perceptions of benefits of intervention in terms of
increasing functionality and productivity following surgery for childhood cataracts have also been cited
as a barrier to care. 410

 Health / Illness Beliefs

Community cultural beliefs, especially in rural areas, have been found to influence approachability of
services. A rural culture of self-reliance has been found to be a barrier to accessing mental health
services. 401 Additionally, in rural communities, the importance of the role of older family members in
the family to pass on cultural knowledge and language to family members has been a barrier to enable
access to dementia care for ethnic minorities. 419

Cultural ideas around emotional health can also influence approachability of services. For example,
delays in seeking treatment for mood problems, such as depression or mania. 420 Cultural interpretation
of the signs of mental illness may bar families from recognising the presence of a mental health problem.
Finally, cultural attitudes around ‘not complaining’ can also prove to act as barriers. 421

Approachability of health services for PWD in Sierra Leone

29
A common theme found in the literature was health beliefs and its effects on perceptions of those with
disabilities and their health access behaviours as well as the behaviours of caregivers of PWD. Lack of
understanding of origins of disability and/or traditional beliefs that it are tied to witchcraft or
punishment to the family lead to harmful practices such as infanticide. 422 Stigma related to teenage
pregnancy may also lead to abandonment, isolation, poverty and ultimately delayed care seeking
leading to greater chances of obstetric morbidity, mortality and/or permanent disability. 423 Feelings of
individual shame or lack of health knowledge may also lead to PWD to decline treatment (e.g. hearing
aids) or perceive that there is no need for treatment. 364,424,425

For PWD who were able to identify the need to access health services, faith-based healers, traditional
healers and NGOs were important sources of support in addition to available public services.
39,355,363,364,426

Recent literature has focused on stigma of EVDS, patients with Ebola and health care workers who cared
for patients with Ebola. 198,200,292,294,427290 EVDS indicated shame as a barrier towards accessing services
related to post Ebola syndrome and reintegration services. 204,428 During the outbreak, obstetric patients
feared seeking care at health facilities while health care workers in obstetric settings were afraid to treat
patients leading to a breakdown in services in a country with a high maternal mortality as a result of
poor access to skilled birth attendance. 425
Acceptability

4.5.2. Acceptability Supply side: perceived

appropriateness to seek care through
this service - relates to cultural and
Acceptability of health services for PWD Globally social factors determining acceptance
of the service (e.g., the sex or social
Barriers to acceptability can be a lack of understanding of the group of the providers, the beliefs
service provider of non-western paradigms of illness. Services associated to systems of medicine).
can be perceived to not understand how patients conceptualise
their own issues and presume a Western construct of mental Demand side: ability to seek health
health, illness, and treatment. 421 For example, in Western services – relates to personal
countries, young refugees have avoided mental health services autonomy and capacity to choose to
because of service providers ignoring or underestimating the seek care, knowledge about the
role of community and family in the person’s life. 421 Similar health care options and individual
barriers have been cited within physical health services for rights to express intent to obtain
secondary conditions for PWD with mental health issues 236 health care.
Cultural differences between the service provider and the PWD
in the interpretation of time can act as a barrier. 421

Cultural differences with the care provider can prove to reduce acceptability of services. 419 Carers of
PWD have expressed the preference for care providers of the same cultural background due to fears
about important information getting lost through a translator or having the value of the information
received from the care provider reduced. 336 Ethnic minorities access services for children with
developmental disabilities have cited cultural differences with care providers and described themselves
as “minority within a minority” in the service delivery system as a whole. 402

Language of service provision and related communication options and services may hinder accessibility.
Some languages lack words to negative emotional states, which can hinder PWD with mental illness and
their families in communicating with service providers. This can lead to misinterpretation of the nature
or severity of symptoms or misdiagnosis and have an impact on adherence to medications and follow
appointments. 420 Ethnic minorities and PWD with differential communication functionalities may have
language and communication difficulties with care providers. 402 Even when interpreters services are
30
offered, there can be a mismatch between the client and the interpreter on gender, age, dialect, and
culture. 421 For example, 36.7% of girls with hearing impairment in Nigeria were embarrassed to ask
questions in the presence of an interpreter. 302

PWD, their families and communities may not always perceive PWD as requiring or being worthy of
health care access. 301,429 Beliefs relating to negative origins, such as sin or witchcraft, of certain
impairments may prevent PWD or their families from seeking health care. 355 In addition, as PWD may
not be viewed as being able to contribute to the economic success of the family, investment in their
health may be seen as irresponsible use of resources. 252,430 Such views can impact on community
perceptions of the acceptability for investment in paying for services for persons with intellectual
disability, for example. 431

As mentioned above, PWD are viewed as asexual, 60,86,231 not sexually active, or able to have children.
230,252
PWD perceive those with physical disabilities as having less sexual and reproductive health rights.
301,407,429,432
Such assumptions move beyond SRH, even to public health. Often, PWD are viewed as not
requiring access to health promotion and disease prevention. 60,433

Viewpoints on lack of agency or ability to make choices and decisions means that often, PWD are
assumed to have no decision-making capabilities or authority. Such agency is often transferred to family
members or guardians, without mechanisms to appeal such transfer of agency or to play a supported
role in decision making around health care. Cultural understandings of protection of PWD within the
family may be linked to overprotective behaviours, thus avoiding access of services. 431

Stigma related to service use can act as a barrier to acceptability. In LMICs, stigma related to mental
health epilepsy and substance abuse is high. 434 Adolescents in rural communities have cited social visibility
of the use of mental health services and the stigma associated with mental illness as barriers, stating: ‘you
couldn’t go anywhere without people knowing who you were.’ 401 Stigma related to mental illness can
vary according to culture. South Asian culture is cited as being linked to high stigma due to the value
ascribed to religion and such illness being interpreted as moral punishment. Stigma related to accessing
dementia care for family members can cause a reduction in the family’s social standing and interrupt
marriage arrangements for subsequent generations. 336 In rural communities, accessing dementia care
may require travel outside of the community, which may have its own stigma as being associated with
a place where people are sent to die. 419 Even stigma around physical impairments emerged. Young
people have cited avoiding vision services to avoid classmates making fun of their use of corrective
lenses. 342

Culturally-preferred coping strategies that present alternative options to seeking care can be barriers
to acceptability. Family care of a person with mental illness or dementia can be culturally preferable due
to a high value on family care provision. 336 Such coping strategies may include accessing alternative
treatments. For example, a preference for traditional and religious healing was found in Ethiopia, which
was often preferred due to cultural expectations around the effectiveness of treatment for mental
disorders. 393

PWD may have a fear of seeking rehabilitative care 383,386–389,398 or even a fear of routine services. 435
Anxiety is a barrier to dental services for persons with neurological conditions. 352 Women PWD who are
affected by intimate partner violence (IPV) have been cited to be fearful of maternal services due to a
fear of disclosure of their abuse, judgements by the service providers, and a loss of control. Researchers
have pointed to ‘double’ fear of judgement for both being a victim of IPV and living with disability,
which often means being judged as an unfit other. Such fears can be compounded by the lack of
information on inclusive services which cater to such needs. 256 Fear of authority among people of

31
refugee background has been cited as a barrier to accessing mental health services. 421
Even difficulty
of using assistive devices can be a barrier in their use. 342

Acceptability of health services for PWD in Sierra Leone

Differences with the care provider can prove to reduce acceptability for EVDS. In a study of EVDS, several
respondents shared that care providers were afraid to interact with them and distanced themselves. 179
In another study on EVDS utilisation of traditional and cultural medicine, 20% of respondents perceived
a traditional practitioner as providing more support (29%), spending longer in consultation (50%) and
providing a more holistic approach to health (49%) than a medical doctor and 50% perceived that they
would spend longer with patients compared to a medical doctor. 373

Personal and social values interact with cultural norms to form health care seeking behaviour. The
indigenous construction of disability in Sierra Leone and the context of national traumatic events,
resulted in large subsets of groups (most notably amputees, EVDS) faced with the task of surviving in a
harsh economic reality of post-emergency environments. This has created a framework of PWD that
forces an embracing of an identity that is solely based on disability, preventing integration, effective
advocacy and encouraging isolation and powerlessness. Embracing disability as identity becomes a
survival mechanism to access resources from government and/or NGOs, many of whom use a western
based understanding of mental health treatment, disability and the delivery of international aid.
36,220,284,436–444
Traditional understandings of disability in Sierra Leone can lead to “violent cures,”
isolation, death and marginalisation of the affected person by community members. 367,422 This stigma
often acts as a barrier for decision makers in a PWD life to seek care and if care is sought to maintain
compliance with treatment. 369,440,445 Some PWD are also thought to internalise these feelings creating
a lack of agency to identify and seek care. 147,375 Additionally stigma often extends beyond communities
and into other facets of society including health care facilities, educational spaces and amongst public
officials and government spaces. 446 This is despite strides made in policy, specifically non-discrimination
legislation. 366,447 This is further exacerbated with the challenges of out of pocket expenses and missed
opportunity costs involved in seeking care. 364,375

Negative beliefs of the origins (i.e. witchcraft) of disability also reinforce preference for traditional type
healers as a more cultural appropriate treatment due to the belief that they have access to the spiritual
realms associated with the disability. In fact one study reported that 90% of persons with mental illness
in the northern province of Sierra Leone sought treatment from traditional healers. 371 Further
exploration of stigma and its effect on health seeking behaviours of PWD in relation to treatment from
public health facilities and traditional and faith based healers is needed. 38,425,448

A growing body of research has established protective factors of community acceptance and social
support in counteracting traumatic exposure and negative mental health outcomes of war affected
youth. 273,449–453 This is bolstered by personal agency which also counteracts the effects of community
stigma on long term mental health outcomes. 454 It is important to note that these findings are limited
to a subset of war affected youth serviced by an NGO in the immediate aftermath of the civil war in
Eastern Sierra Leone. However, these findings were used to develop a community-based intervention
model for high risk youth. Similar effects of protective factors were found regarding household
caregivers and social support structure, further strengthening the evidence to develop interventions and
advocacy to strengthen community support, personal agency and family acceptance of war affected
and high-risk youth. 454–460 Similar findings were also indicated in a study with women suffering from
obstetric fistula. 425,461

32
While the FHCI did not address norms around acceptability for women to seek healthcare, strong
support from political leaders, such as the president, may have an indirect positive effect on norms
relating to acceptability of access to care. 462

4.5.3. Availability Availability

Supply side: services can be

Availability of health services for PWD Globally reached physically and in a timely
manner - relates to characteristics
 Lack of available services and distance of facilities/physical space, of
urban space and decentralisation,
Lack of available services may mean that distance to services may
of service providers, and modes of
be a barrier for both rehabilitation services 382–384,386–390,463–465 and
provision of services
general health services. 251 For example, lack of available services
for cerebral palsy services in public care facilities can result in
Demand side: ability to physically
families needing to travel to access public services due to lack of
reach health services – relates to
home visits provided. Thus, distance to care, including both the
personal mobility, availability of
need to travel while managing other family priorities may be an
transportation, occupational
barrier to access. 466
flexibility, and knowledge about
health services
While distance to services may be a factor in access, terrain and
distance alone do not predict perceived access for PWD. 467

 Physical accessibility of health facilities

Physical accessibility of health service points may be limited for PWD. PWD may find it challenging to
navigate road conditions, alongside mobility, sensory, and cognitive impairments. Lack of social support
to ensure a person to accompany the PWD to navigate transport and/or road conditions may also prove
challenging for PWD. PWD often lack accessible transportation to and from health care facilities, with
those in rural areas facing greater difficulties. 60,252 PWD in rural areas of Mozambique felt
disadvantaged in regard to distance to refractive services. 394

Security when travelling may also be a concern. In Ethiopia, women reported fear of being raped or
assaulted, which, as mentioned above, is more common for PWD, on the journey to access services. 393
Lack of accommodation offered at facilities which are far from PWD residence may also be an inhibiting
factor for access. 396

PWD report transport problems for accessing both rehabilitation services 248,307,382,383,386,389,464,465,468–470
and general health services. 251,307,319,396,399,435 For example, PWD with neurological conditions, may find
accessing care limited due to mobility and/or driving licence restrictions. 352 Finally, PWD may often
require someone to accompany them if they travel. 382,386–390

 Few specialised care providers

Specialised services are usually not offered at the primary and community levels, and where they are
available, they can be narrow in scope or are fragmented. For specialised services for PWD, there are
shortages of availability of service providers, such as physical and occupational therapists, mental health
care providers, speech-language pathologists, prosthetic and orthotic providers. Qualified rehabilitation
service providers in Africa are below 30 per million population, 471 with only 6 physicians specialised in
rehabilitation providing services, all of which are located in South Africa. 472 Specialised services are
often not provided by the public health care system, but by private NGOs. 28 Finally, many Ministries of
Health lack a specific department or staff with assigned responsibility for disability or rehabilitation. 28

33
For example, in Ethiopia, participants commented on the few public health facilities offering mental
health services. This had a compound effect on access, not only tied to distance to access services, but
also the fact that the availability of the service within the community would allow for community
members to witness improvements in the lives of those who had been treated. This was identified as an
important factor for access, as the decision to seek care was reported to be dependent on the success
of those who had previously access services at the mental health facilities. 393 In addition to the care
providers themselves, lack of certified interpreters in facilities may also be a barrier to accessibility. 302

 Physical accessibility within the health facility

Physical barriers related to the layout and design of health facilities may be more pronounced for PWD.
These may include inaccessible parking areas, uneven access to buildings, lack of ramps, poor signage,
narrow door-ways, staircases, inadequate toilet facilities. 60,222,231,252,301,409,473–475

The World Health Survey data shows that inadequate healthcare equipment as a reason for lack of
access to care was more likely for male PWD than for men living without disability. 60

Design of health equipment, such as adjustable examination or birthing tables and mammography
equipment, and the availability of supportive mobility equipment, such as wheelchairs, or even
availability of staff to support interacting with such equipment, may be absent. 60,252,301,473,476 For
example, persons with neurological conditions may not be able to transfer to a dental chair without the
use of transfer aids or a hoist. 352 Physical impairments, such as spinal cord injuries, may also result in
similar restrictions. 413

 Equipment, tools, and medical supplies

The lack of sufficient health equipment and medical supplies for the provision of care may prove to be
a barrier to access for PWD. Providers may lack sufficient supplies to provide care for the primary
condition affecting PWD. For example, in LMICs, clinics have a lack of casting materials and abduction
braces for clubfoot treatment 405 Specialist providers have cited lack of equipment to offer screening for
secondary conditions, such as physical health conditions. For example, mental health providers have
cited a lack of monitoring equipment for physical health status in the screening of PWD with SMI for
comorbidities. 234 Finally, a lack of availability of drugs can be a barrier to accessibility. 380,382,390,465,470,477

 Time to wait for care and for consultation

PWD have cited time to wait or delays for appointments and scheduling of appointments as a barrier
to care. 222,337 For vision services, urban waiting times averaged less than one month while waiting times
in rural regions were over one year. 342 Even once at the clinic, PWD have also pointed to long wait
times. 383,389,468 Persons with dementia in rural settings had long wait times to have diagnostic testing
done. 337 Lack of out-of-hours care can contribute to waiting times. 222

 Service capacity and time in consultation

The service capacity and sufficient time to spend in consultation with PWD may be limited. 222,234,419,421,466
PWD may require more time in the consultation than others. For example, it can be difficult for persons
with neurological conditions to quickly access exam tables or dental chairs due to slow movements or
gait. 352 PWD may require additional time for communication. For example, PWD have pointed to a lack
of time for providers to explain bracing protocols for clubfoot care. 406

Service capacity issues, including overloading of providers, high staff turnaround, and lack of integrated
care have been described as barrier in mental health care and screening for comorbidities among PWD.

34
 PWD with cerebral palsy in rural areas have been described to be disproportionately affected
234,419,421

during periods of heavy demand, with longer waiting times. 466

 Skills capacity of service providers

Healthcare providers’ skills and training were found to be barriers to accessibility among a range of
services for primary and secondary conditions. For example, PWD are twice as likely to find healthcare
providers’ skills inadequate. 60,382,478 In LICs (lower income countries), World Health Survey data points
to lack of care access related to lack of skills of healthcare provider as being more likely for PWD. 60
Healthcare providers are often not living with disability themselves, and often have a limited awareness
and/or understating of disability. 407,432,479 Lack of knowledge of management of primary conditions,
available services, recognition of risk factors, such as abuse, and cultural competencies were found to
be barriers to care. 405,406,413,420 While care providers may receive training, they themselves can view it as
insufficient to meet the needs of PWD. 480 For example, ethnic minorities accessing dementia care in
rural areas reported a lack of cultural training, understanding of dementia, knowledge of available
services for referral, and the ability to recognise elder abuse among providers. 419 For service providers
catering to patients who require assistive technology, a high level of professional knowledge and skills
is required. Not only is knowledge of the available assistive products and how to use them required, but
also knowledge and skills to assess the needs and ambitions of the individual, and about the way that
the technology interacts with other support or treatment a person. 350

Availability of health services for PWD in Sierra Leone

 Primary Health Care Services

While the literature did not provide sufficient information on
availability of primary health care services for PWD specifically
it did provide information on general availability of such
services.
A well-documented challenge of availability of health services
in Sierra Leone is the country’s limited workforce of health care
workers. 143,161,481,482 While the FHCI has targeted improvements
in human resources for health, challenges still remain. 483 The
workforce is limited not only in number but in training and
capacity as well. The recent 2014 Ebola outbreak made this
painfully clear and also exacerbated this problem through the
loss of many health care workers to Ebola infection. For PWD,
who may already face challenges to identify and seek health
care services this additional challenge of supply of crucial
commodities and health care workers can drastically affect
access to and effectiveness of the health services. Examples
from the literature of limited human resources for health
include psychological services for youth ex combatants, health
services in rural areas, and reproductive and maternal health services. 194,484–488
Affordability
Supply side: required resources and
time to use appropriate services and
not require catastrophic expenditure
of resources - relates to direct costs,
indirect costs, and opportunity costs.
Demand side: economic capacity of
people to spend resources and time
to use appropriate services – relates
to ability to pay for health services,
capacity to generate economic
resources (through income, savings,
borrowing or loans). Barriers include
poverty, social isolation, or
indebtedness.

While the FHCI was successful in increasing demand for maternal and child health services, 462,489,490 it
did not fully address availability of services, as it did not address proximity to health care centres, nor
issues relating to mobility. In a 2018 monitoring survey, 7% of FHCI beneficiaries reported taking
between one to three hours to travel to the health facility. However, no specific information was
available for PWD. 491 One interesting find was that mothers living with disability had higher access to
maternal services than mothers living without disability whereas other service delivery indicators (skilled

35
birth attendance, facility deliveries, and contraceptive use) were more or less equal between mothers
living with and without disability. 194

Limited availability of medicines has also been reported in primary health care. FHCI beneficiaries also
blame healthcare workers for selling of such drugs in the private market by healthcare workers. 164,492,493
Or, if medicines are available, they may be expired. 494

Reports of FHCI indicate delays in service delivery, including late referrals. 164,494 In some cases, reports
indicate that patients do not even receive any care: “Huge numbers of pregnant school girls between
the ages of 14 to 18 always go the [health] centre for treatment that they don’t receive.” 494

Reported increases in utilisation resulted in overcrowding of health facilities, which may impede
availability of services. In a 2018 monitoring survey of FHCI, 28% of respondents reported to have waited
too long for services to be provided. Participants in Pujehun (71%), by Bonthe (48%), Kailahun (41%)
and Kenema (30%) had the highest proportion of respondents reporting long waiting times. 164,494

 Disability-Specific Health Services

Availability of psychosocial support for various groups affected by the Ebola outbreak was also identified
in the literature. In a country where the treatment gap for mental health illness is already greater than
99%, 368 the issue of untreated trauma and its effect on population health is usually highlighted during
and in the immediate aftermath of the Civil War 495 and more recently the 2014 Ebola outbreak and
2017 mudslides. Deficiency in capacity of mental health professional staffing during and following the
Ebola outbreak was estimated at 50–100%. 482 Sierra Leone’s current mental health staffing is limited to
a single psychiatrist, 20 health nurses and 100 trained paraprofessionals. 496 This is supplemented by
charitable, non-governmental and international aid organisations who have started to recognise the
importance of mental health and psychosocial support during emergency and non-emergency
environments. 497–499

Survivor clinics have been opened in Kenema and Freetown although the services provided are not
sufficient to meet the needs of this group. At Connaught hospital, 14 non-specialist nurses were trained
in mental health awareness and more than 100 nurses, auxiliary staff and physicians attended workshops
focused on mental well-being. 203,500,501

Ebola’s psychological legacy has not only brought to the forefront clinical manifestations of mental
health in EVDS but also the need for psychosocial support for clinicians, communities and the nation as
a whole. Specifically, that these services need to be made available during an outbreak and should be
integrated as part of the services provided emergency response. In Sierra Leone, meaningful attempts
were made to address this. A psychosocial pillar was created at the National Command Centre 502 and
later carried over to the Public Health National Emergency Operations Centre. Psychosocial support has
been identified not only for EVDS but for health workers as well, particularly as they deal with difficult
working conditions, deaths of colleagues and community stigma of treating patients with Ebola.
Although small in number, the specialised cadre of mental nurses have shown their usefulness in during
the Ebola outbreak and in public health emergencies in the following years such as the 2017 mudslides
and floods in Freetown. These mental health nurses who are also trained as general nurses, were able
to be deployed to affected areas and provided onsite support to both emergency workers and
communities affected by the disaster. 496

The availability of effective and appropriate psychosocial and mental health services during a health
emergency in Sierra Leone can be seen as largely tied to the infrastructure available during non-
emergency periods. In its current state, Sierra Leone’s health system is not able to handle large amounts
of people who seek mental health services. 498 This becomes most apparent during humanitarian
36
emergencies when the need for mental health services spike and can cause lasting trauma in the
affected population. International aid organisations often increase their capacity to deal with the surge
in demand for mental health services but these are not sustainable nor transferred to local counterparts.
487,503
While some infrastructure exists there are only 250 beds available nationwide and a limited cadre
of 20 mental health nurses. 182,504 Much of the services are sporadic and dependent on ad hoc training
and services provided by NGOs 445,487,505–507 and focus on the adult population. 369 Building up mental
health as a robust specialist practice in Sierra Leone has been challenging due to limited incentives
(financial and professional) and the stigma of treating mental health patients. 508 In order to fill some of
this gap in personnel, some studies have shown that bachelor’s level mental health workers with intense
training and supervision can be trained to deliver cognitive behavioural therapy in community settings
with little risk of negative effects. 509

Public community level health services are provided by approximately 15,000 community health
volunteers called Community Health Workers (or CHWs). Although their scope of work does not include
mental health services, some have been trained in psychological first aid given their proximity and
availability to communities. 38 Other traditional community healers and faith healers are often sought
for care for the sake of their cultural appropriateness and number which makes informal care more
available and accessible. This is true for mental health, some surgical related disease 376 such as rectal
bleeding and has also been a challenge in obstetric care where many pregnant women may prefer to
deliver with a traditional birth attendant for convenience, cost and cultural acceptability. Therefore, the
availability of surgical services (personnel, equipment and management) in Sierra Leone is important in
prevention of disability due its relationship with the reduction of morbidity for adults and children in
the areas of surgical disease, filaricele and obstetric and gynaecologic fistula. 360,392,510,511 This may be an
important service for rural women, since they are at higher risk of fistula than those living in urban areas.
512

Distance from facilities may interact with transportation access and costs. In a study of uveitis patients,
those who were further from the facility often had higher morbidity because of financial constraints to
access the facility, only doing so once eye sight had become extremely poor. 377

4.5.4. Affordability

Affordability of health services for PWD Globally

PWD have been documented to be unable to afford rehabilitation services 307,381,465,468–470,478,513–

515,383,384,387–389,397,463,464
and routine health services. 251,307,477,380,384,390,396,398,399,435,464 PWD were more likely
to not access care due to not being able to afford care. 60

 High healthcare expenditure

PWD spend more on health services than those without disability. 60,224,251,252,300,316,320,355

However, evidence from a systematic review found mixed results to support this, with studies showing
both higher expenditure for PWD 60,251,320,323,516–518 and no difference in expenditure for persons living
with or without disability. 315,316,324,355

Costs for specific services for primary conditions of disability may be high, including vision services;
342,413
specialist communications therapies; 431 surgical interventions; 410 and dental services. 352 For
example, economic factors make assistive technologies expensive. They usually are produced by

37
relatively small companies, mostly with a national or regional scope. While wheelchairs, prosthetics and
orthotics are an exception to this point, the numbers of products sold are insufficient to reach an
economy of scale to reduce production costs and lower prices. As a result most assistive technology
products are expensive, and some are extremely expensive. 345,350Transport costs may be higher for PWD
in order to accommodate additional space needs or an additional person, who may require their costs
to be paid or even additional financial incentive to accompany the PWD to services. 301,476,519

Half of PWD cannot afford healthcare and are 50 times more likely to suffer catastrophic health
expenditure. 28,60 PWD and their families are more likely to be affected by poverty, thus less likely to be
able to pay out-of-pocket for services. In addition, economic costs of accessing health services, such as
reduced labour or opportunity costs, can be barriers. 222,520 For example, in ethnic minority families with
children with developmental disability, the lack of resources to meet existing family needs influences
determination of accessing care for the child. 402 A gendered dynamic emerges for women who have
caring duties who need to access care away from their residence for may result in unaffordable costs
related to childcare. 393

 Insurance and bursaries

PWD in LMICs are less likely to receive bursaries or subsidies for services 60,252,316,320,355 PWD are also less
likely to access insurance programmes. 252,301 However, a systematic review found mixed results in
relation to PWD access to insurance, with some studies finding less access to insurance. 251,306 or no
difference in access. 251,311,320,323,521,522

In cases where PWD can access health insurance, not all healthcare needs may be covered, and are less
likely to cover rehabilitation and specialised health services, assistive technologies and costs associated
with their delivery, or transport costs, which they are more likely to need. 252,320,523 Even amongst PWD,
low insurance coverage can affect persons with somatic disabilities more than physical disabilities. 420 In
some cases, PWD may be excluded from insurance programme coverage based on their disability status.
28

 Financial incentives for providers

Even when appropriate services for PWD are affordable, such an attribute may serve as a disincentive
to care providers. Evidence shows that for clubfoot treatment in LMICs, orthopaedic surgeons received
higher reimbursements for performing surgery rather than using the Ponseti treatment (the preferred
non-invasive method, which uses a cast followed by a brace), discouraging the uptake of the method.
405

Affordability of health services for PWD in Sierra Leone

In Sierra Leone, households with one or more persons with severe disabilities spent 30% more on health
care than those without people with severe disabilities. 39,447 However in urban areas, expenditure on
health care for those with mild or moderate disability was lower than those without. 39 Overall
substantially more PWD report illness/injury as the reason for not engaging in employment. Not being
engaged in employment puts further strain on covering out of pocket costs related to accessing health
care. 524 Costs related to transportation fees to the facilities, user fees and lost opportunity costs for
those accommodating the patient were the most common reasons cited by PWD for inability to access
care in studies evaluating treatment for rectal bleeding, gross haematuria, hernia repair, women’s health
particularly child birth and obstetric fistula, physical rehabilitation services and mental health services.
284,364,366,376,396,425,487,525–527

38
A review pointed out the various struggles women face in their homes and communities that make
them more vulnerable to long term disability and financial burden. 528 Additionally some studies cited
that women (those living with disabilities and those without) often had a harder time accessing care
because financial decisions including those needed to pay for transportation and/or health services
were made by the husband. 213,425 In some cases where user fees were not applicable this fear could be
mitigated. However, lack of transparency on user fees at health clinics was also a deterrent for PWD
seeking care as they were often at the mercy of the health care workers who could withhold treatment
if patients refused to pay. 213,367

The FHCI by design is intended to address the affordability dimension of access to services by removing
services fees and fees related to key medicines. Evidence of the impact of FHCI on affordability can be
inferred from household spending as a proportion of total health expenditure reducing from 83% in
2007 to 62% in 2013. 529 However, reports of patients being charged for services and/or medications
are ongoing. 462,492–494,530 Reports suggest that essential drugs for women in pregnancy and childbirth
are not available for free, but can be purchased in the same facility on a ‘cost recovery’ basis. 462 A 2018
monitoring survey reported that 31% of respondents reported having paid for medications, with such
proportions highest in Bo (64%), Kailahun (61%), Moyamba (45%), Port Loko (41%) and Kenema (31%)
districts and lowest in Kono (3%) and Pujehun (7%) districts. On average, respondents reported paying
SLL 55,000 (approximately USD 6 in 2019) for medications. 491 FHCI beneficiaries have also reported
paying for services, with 21% reported paying for deliveries in the health facility, with the highest
proportions of beneficiaries reporting paying for deliveries in Kailahun (73%) and Pujehun (65%)
districts. 491

In Sierra Leone, PWD have been documented to have difficulty not only in paying for general
healthcare services, including drugs, but also for disability-specific services, such as the provision
of orthotic and prosthetic devices. 356 People with poliomyelitis and amputations report being
ignored at the hospital unless they were able to pay or even not receiving treatment despite paying
fees. 367

39
4.5.5. Appropriateness

Appropriateness of health services for PWD Globally Appropriateness

Supply side: adequacy of services -

 Role of care provider attitudes in perceived quality of care
relates to what services are provided
PWD may not receive respect from health care providers 231 and their quality. Match between
and are two to four times more likely to report negative services and clients’ need, timeliness
attitudes of healthcare providers, resulting in them not of services, the amount of care spent
receiving care, compared to persons with no disability. 60,252 assessing health problems and
determining the correct treatment,
World Health Survey data show that PWD worldwide have and the technical and interpersonal
not accessed care due to being previously treated badly or quality, coordination and continuity,
even being denied care. 60,228,382,470 The World Report on and the possibility to choose
Disability found that PWD are three times more likely to be acceptable and effective services.
denied care, and four times more likely to be treated badly
in healthcare. 60 Several studies have documented Demand side: ability to engage in
discrimination or poor treatment from rehabilitative services health care or the participation and
providers 382–384,386,464 and routine health services providers. involvement of the client in decision-
60,396,531,532 making and treatment decisions,
which is in turn strongly determined
PWD have documented negative attitudes, which translate by capacity and motivation to
to disinterest and failure to promote inclusivity. 254,301,407,432,519 participate in care and commit to its
Since primary care consultations can take longer for PWD, completion. This dimension is
disinterest of care providers can translate into lack of strongly related to the capacity to
adequate quality of care. 533 Finally, attitudes of healthcare communicate as well as notions of
provider may result in negative conduct, including health literacy, self-efficacy and self-
derogatory language towards PWD. 419 management in addition to the
importance of receiving care that is
Perceptions of PWD sexuality, as mentioned above, may actually appropriate for the person,
influence care providers’ quality of care. For example, women given its resources and skills.
with functional impairments are less likely to be asked about
contraceptive use during primary care visits. Involuntary sterilisation has been used to restrict PWD
fertility, occurring mostly with women and those with an intellectual impairment 301,429,534,535 and is more
likely among PWD. 326

PWD may be differentially affected by attitudes of care providers and subsequent effects on quality of
care. Mistreatment has been documented as occurring more often in women in with neurological
conditions than in men, 352 with mistreatment increasing with factors such as declining health status,
disability, depression, and loneliness. 352 Multiple forms of inequities based on ethnicity, class, gender,
and immigration status can have a compound effect on the likelihood of discrimination to affect PWD
access to care. 536

In a study on PWD access to maternal care, women living with disability overall perceived their care in
more negative terms than women living without. In particular, they felt that they were not always spoken
to so that they could understand, listened to, did not always have time to ask questions, were not always
sufficiently involved in decisions about their care, treated with respect, or their concerns taken seriously.
Women with sensory, mental health, learning or multiple disabilities were more likely to be left alone at
a time when it worried them during labour or shortly after birth. 325

 Interpersonal communication with care providers

40
A poor relationship with a care provider can affect access to care for PWD. 387,396,398 Adolescents
accessing mental health services in rural communities expressed a preference for supportive counselling
over structured interventions with providers who are ‘caring’, ‘non-judgemental’, ‘genuine’, ‘young’, and
able to maintain confidentiality. 401

Communications with healthcare providers for PWD may be challenging. 465 For example, persons with
neurological conditions may be hampered by expressionless faces and lack of nonverbal
communication. 352 Communication barriers due to impairments (including sensory, cognitive, and
psychosocial) 254,301,429,476, as well as an absence of information in accessible formats during the
consultation 60,252 can negatively impact the quality of services provided.

When PWD cannot understand the healthcare provider, important directions related to life threatening
situations can be missed, as in the case of a midwife. 254,301,429 When the provider cannot understand the
PWD, important information from the patient, such as medical history, can lead to misdiagnosis and
subsequent care, including medication. PWD may not be able to receive accurate information on
explanations of diagnoses, prevention strategies, treatment plans, and recommendations for follow-up.
Resulting care may not be appropriate, timely, or of high quality. 60,252

When PWD and healthcare providers cannot communicate, often caregivers or family members assist
in communication. However, this may lead to inaccurate case histories 60,533 or disclosure of sensitive
information, such as that relating to SRH of the PWD to family members. 231,407,537 Similar difficulties are
encountered with professional interpreters. 301,429

 Role of communication in the diagnostic and treatment process

Ineffective communication regarding health concerns is one the five major qualities of care issues of
PWD. Care providers may not obtain sufficient information an accurate diagnosis, which could lead to
unnecessary testing and ineffective treatment. Inaccurate communication may also lead to provider
inference of patient problems that do not exist. Finally, poor clinical communication can lead to PWD
misunderstanding information from the care provider, resulting in poor adherence to treatment
recommendations and undesirable clinical outcomes. 538,539 PWD with bipolar disorders identified care
providers from different backgrounds as having ineffective communication, which resulted in ineffective
diagnoses and treatment. 420

Healthcare providers may often suffer from diagnostic overshadowing, the tendency to attribute
symptoms of an unrelated illness to a person’s impairment. This may lead to healthcare providers not
providing appropriate and comprehensive health assessments. This can lead to low quality of care or
inadequate care, including for the management of co-morbidities in PWD, delayed treatment, and even
further expenses. 60,252,540 In a study on PWD with hearing impairment, such patients were less satisfied
with care, as the care provider was more concerned with their overall health, rather than the complaint
itself. 538 PWD with dementia in rural settings reported being dismissed by care providers upon
complaints related to memory functioning. 337 Finally, PWD with mental health issues report their
physical health complaints as being interpreted as symptoms of mental illness, resulting in a failure to
diagnose and treat secondary conditions. 236

 Role of information provision in patient’s decision making

PWD may not always be provided with sufficient information to be involved in decision making related
to their own health. 336 PWD women accessing maternal services cited involvement in decision making,
and being able to establish a trusted and respected relationship with care providers as needing
improvement. 325 In a study on PWD with chronic disease, inadequate information provision and a lack

41
of involvement in treatment decisions were reported across different disease groups. Patients reported
preferences and goals for treatment as not discussed (26-50 %); rarely or only sometimes encouraged
to ask questions (24-38%); and rarely or only sometimes told about treatment options and involved in
decision making (12-31%). 222 Caregivers for PWD with dementia in rural settings reported not receiving
the information they needed or an understanding of diagnosis, even across multiple appointments. 337

 Comprehensive care and continuity of care

PWD often require multiple services across different levels of care and service delivery. PWD often
receive fragmented or even duplicated services 541 Comprehensive care that addresses the patient as a
whole person, when lacking, can prove to hinder access to care. Women with spinal cord injuries have
reported a lack of whole woman care. 413 For PWD with chronic diseases, services such as nutrition,
physical therapy, support groups, and rehabilitation are required for whole person care. However, only
half of patients reported these services, reporting main reasons as lack of knowledge of these services
(22%) or lack of care provider referral (23%). Factors affected accessed to comprehensive services
included: referral, frequency of contact with care provider, perceived need, and prior use. Not all PWD
were affected equally, with variance across ethnicity, gender age, education, comorbidities, disease
severity, and reduced health status all having an effect. 222

For PWD with severe mental illness (SMI), the lack of connection between care providers for primary
(mental health) and secondary (physical health) conditions can result in gaps in quality of care, such as
fragmented treatment and negative experiences in discharge follow up. 236 Even psychiatrists themselves
report dramatically lower levels of access to referrals, hospital admissions, ancillary care, adequate
inpatient days, and imaging studies for their patients. 421,542

Stigma may also impact continuity of care for PWD. In PWD with mental health disabilities, health-
related stigma is associated with decreased medication adherence and relapse of abusing substances.
434

For PWD requiring clubfoot treatment, lack of cooperation in the healthcare system in LMICs has
resulted in children being treated in general orthopaedic clinics rather than organised clubfoot clinics,
meaning they needed to compete with other patients for treatment time. 405

PWD are reported to face difficulties in continuity of care when transferred from one service provider
to another, such as in the cases of transitioning from paediatric to adult services, or from adult services
to elderly care services. 354,543

 Effectiveness of treatment methods

PWD may find barriers to accessing quality care in the form of effectiveness of treatment methods. If
delivery care is not of sufficient quality, it can lead to further disability and even death . 544 In a review
on clubfoot care in LMICs, care providers were not following Ponseti method (the preferred non-
invasive treatment method) protocols, but preferred to follow a more invasive and costly treatment
protocol (see Section 4.5.4 Affordability page 37), which had a negative effect on clinical outcomes. 405
Families accessing services for young people with intellectual disabilities in Bolivia cited a lack of
effectiveness of treatment, despite high costs. 431 For PWD accessing assistive technology, due to the
market of such devices, it is difficult to find service providers who can assess and provide advice
independent of commercial bodies manufacturing the assistive products themselves. 350 This may be a
barrier to receiving the most effective assistive technology.

Appropriateness of health services for PWD in Sierra Leone

42
Appropriateness captures the need to acknowledge the quality of services specifically their availability
and the “possibility to choose acceptable and effective services.” 16 For PWD, particularly those with
psychosocial impairments, the ability to choose acceptable and effective services from traditional and
faith-based healers (who are more readily available in Sierra Leone than mental health clinicians) could
make up for the lack of mental health clinicians available. However, whether either of these service
providers provide adequate health care would largely depend on outcomes of treatment and not just
availability of the practitioner. One review noted that both groups appeared to be congruent on
prevalence of mental health illness but worked independently of each other. 487

At the national level the genuine involvement of PWD in policy development and implementation is key
to ensuring adequacy of services and mainstreaming PWD into cross cutting initiatives such as the basic
package of essential health services (BPEHS), poverty reduction strategy plans (PRSP), the Mental Health
Gap Action Programme (mhGAP) and the Mental Health Leadership and Advocacy Program (mhLAP)
implementation in Sierra Leone. 503,545–548

Inclusion of communities in the development and implementation of interventions was also featured in
the literature, particularly with interventions targeted at mental health. Pronounced themes and target
groups included community acceptance, reintegration of war affected youth, high risk homeless youth,
EVDS and EVD-affected communities as well as professional training psychosocial support for health
care workers during and following the EVD outbreak. 198,210,281,292,436,449,460,506,525,549–554

Furthermore, the frameworks of these ‘groups,’ including PWD, war wounded, and, most recently, EVDS
should be explored further. These groups of people are often categorised together as a result of
catastrophic trauma such as war, Ebola or other humanitarian emergencies in Sierra Leone. But how
such groups are defined can have a significant impact on accessing care. 211,283,443. For example, EVDS
have reported stigma from health care providers when accessing FHCI when their status is known. 183

Satisfaction with health services may be a factor in future care seeking through trust in the services.
FHCI beneficiaries in rural communities are reported to not trust FHCI services, 490 but trust is also a
factor for urban residents as well. 555 In addition, there are reports of FHCI patient mistreatment in urban
areas. 494 In a 2018 FHCI monitoring report, 89% of FHCI beneficiaries reported that health workers
treated them with care and respect, a proportion which varied from 77% in Koinadugu to 97% in Kenema
districts. Similarly, satisfaction with free health services ranged from 89%-97%. 491 User satisfaction with
health care services of PWD compared to those without is mixed in the literature with some studies
reporting no strong difference, 355 while others report PWD reported higher rates of dissatisfaction with
services. 39

Other aspects of appropriateness that came through the literature were treatment acceptability and the
adequacy of diagnostic tools and their successful use in Sierra Leone. Again this mostly centred around
mental health and physical rehabilitation, particularly use of assistive devices and use of mental health
diagnostic tools along with their validity and reliability in the contexts of Sierra Leone. 367,556–562

Other studies pointed out the inappropriateness of tools and treatment protocols that were often
exacerbated by lack of clinician training in their use and/or a lack of understanding on the implementers’
part of mental health constructs in Sierra Leone. 487,562–564 A review of mental health care providers noted
misalignment of their diagnoses with psychiatric classification systems and a risk of overuse of
psychotropic drugs. 369 Mental health practitioners however, particularly those employed by or affiliated
with NGOs reported greater support and confidence to perform their duties. 565

Referral services are available in theory but in practice these services are often unavailable or dependent
on the capacity and availability of private institutions. This discourages primary care health staff from

43
taking the time to address and refer mental health cases and is often compounded by lack of confidence
from the primary care practitioner to handle mental health cases. 508 For example, an evaluation of a
targeted hearing screening program found that practitioners were more likely to refer based on
behavioural observations instead of risk factors. 424

Coordination of services is also critical for access to care. In Sierra Leone, services for PWD are
coordinated by both the Ministry of Social Welfare Gender and Children’s Affairs (MoSWGCA) and the
Ministry of Health and Sanitation (MoHS). Other government departments are also mandated to provide
services free of charge to PWD, including the National Commission for Social Action (NaCSA) and the
Ministry of Basic and Senior Education. 35 However, all of these ministries suffer from lack of resources,
poor internal coordination, lack of decentralisation and poor inter-ministerial coordination. 34,566 While
some successful efforts have been completed to align with international expectations, trends and
policies, much of this progress is at the surface level and does not penetrate to make meaningful impact
at the point of service delivery. 38,220,566,567 Although lack of coordination exists between government
agencies, recommendations to promote disability mainstreaming by setting up disability units in all line
ministries is still vocalised as a priority from key stakeholders. 546

44
 PROMISING INTERVENTIONS FOR INCREASING ACCESS TO HEALTH SERVICES FOR
PWD

The literature also uncovered evidence on interventions with the potential to increase access to services
for PWD. The purpose of the inclusion of promising interventions is to identify intervention models as
potential case studies, as well as to recommend for implementation. Intervention models proven to
work in the Sierra Leonean context are preferable; however, if gaps remain in what has been
implemented in this context, intervention models from the global review which have been implemented
in similar contexts may be equally as useful for this purpose. Therefore, while global interventions are
presented in the results, only ones which address gaps in Sierra Leone-specific intervention models are
presented in the body of the report. The remainder are presented in as annex (see Annex 2: Promising
Interventions for Increasing Access to Health Services for PWD – Global, page 103).

5.1. Promising Interventions for Increasing Access to Health Services for PWD – Global

Policy Interventions

 Mental Health legislation

Mental health legislation as an intervention can help to ensure that mental health care services are
integrated into primary health care and at the community level. Legislation can help to ensure
community integration of persons with mental disorders, the provision of care of higher quality for
both general and mental health services, and the improvement of access to care at community level.
Finally, legislation can help to reduce stigma related to mental health. 568

Mental health legislation can help to address upstream factors related to all dimensions of access, with
a specific focus on approachability of services.

Anecdotal evidence exists for the impact of mental health legislation on access, with Ghana serving as
an example form the West African context of introducing a mental health law. 569

 National Health Insurance policy

National Health Insurance policies can help to increase affordability for PWD to access services. In
2008, Vietnam introduced the Health Insurance Law, which integrated existing schemes into one
national program and identified 24 eligible population groups represented by the consolidated
schemes, including PWD. The insurance covers a large number of items and has an expenditure cap
of roughly USD 35 per episode for high-tech or high-cost services. In 2010, a co-payment of 20% was
re-introduced, expect for retirees, the poor, PWD, and other social beneficiaries who pay a 5% co-
pay.

A study investigating the impact of the National Health Insurance policy in Vietnam found that it was
effective in improving access to, and financial protection against, public outpatient care for PWD. It
found an increase in utilisation of for PWD, mostly due to inpatient care utilisation, but also in
relation to outpatient visits. However, the study also found that the policy was less effective in
ensuring equity of access across groups and also was not protective against inpatient service costs,
of which PWD use often. The study recommended a supplementary benefit package for PWD to

45
include specialised services and assistive devices, medications, and travel entitlements, as well as
strong community-based targeted methods to address these gaps. 324,570

Training of Health Care Providers & Task Shifting

 Task Shifting

Task shifting interventions are ones where non-specialist providers provider supports service
delivery, with supportive supervision by skilled providers. This approach has been modelled in
mental health care service delivery, screening for comorbidities, HIV services, rehabilitation services,
and surgical care, among others.

Task shifting interventions aim to address the availability of services for PWD. However, they can
also address affordability.

Evidence for task shifting has shown that such models can increase access and uptake of services in
LMICs, while supporting community acceptability of services. However, there is caution on the
evidence for maintaining quality of care of services. One example of a task shifting model is from
Ghana, where a pilot mental health project in Kintampo district from 2004 to 2010 showed that task
shifting can increase access to services for PWD. The project trained community mental health
workers who were supervised and mentored by psychiatrists. These cadre conducted periodic
community outreach programmes, assessed and managed mental illness, and facilitated access to
mental health treatment. 569,571

Comprehensive Care

 Integration of disability services into general health services

Integrated care has been advocated as a means to enhance communication between providers, reduce
stigma and medical expenditures, and avoid artificial separation of medical and psychiatric problems
that can result in substandard care. 338 As an example, an intervention in Uganda linked programming
and strategies for PWD, SRH, and HIV. This approach aims to enable disability to be advanced at the
national level in all development processes; increase awareness of PWD rights through initiatives
implemented by government, international actors and civil society; and increase access to SRH
information, protection and treatment for PWD and non-PWD. 407,572 The strategy includes activities to:
improve women PWD livelihoods; engage women PWD to provide inputs into health service decision-
making, planning and delivery; and to ensure health centre staff have access to communication
resources. 573

Integrated care aims to address approachability, acceptability, and accessibility of services.

Evidence for integrated care shows that collaborative models of care are effective at increasing access
to mental health services. Specifically, older populations (65 years and above) preferred collaborative
mental health treatment to mental health-specific services, even when transportation services and costs
for both transport and services were addressed. 338

 Comprehensive Community-Based Rehabilitation

46
Comprehensive Community Based Rehabilitation in Tanzania (CCBRT) is a comprehensive, community-
based maternal and new-born capacity-building programme. It aims to: improve the quality of
emergency obstetric and new-born care; promote friendly care for pregnant women with disabilities;
prevent obstetric fistula and promote early identification of birth impairments; and identify and refer
children with birth impairments.

Implementation includes joint planning and training with members of the governing boards of health
care facilities and politicians who were responsible for implementing district health plans and budgets.
Content of such training is focused on disability-inclusion, including language, recognition of barriers
for inclusion, and identification of legal protections. The second prong of implementation targets the
maternal health needs of PWD. Creating or adapting health facilities for access; providing
communication support and staff training in sign language; and adjustment of service delivery to
accommodate family members to support the PWD in breastfeeding. CCBRT also includes services for:
orthopaedics and physical rehabilitation (surgical services, Ponseti Method (the preferred non-invasive
method, which uses a cast followed by a brace), physiotherapy or occupational therapy); ophthalmology
services (surgical services, refraction, low vision therapy); plastic and reconstructive surgery; and
maternal, newborn and child health services (obstetric fistula identification, referral and treatment
programme). 252,574

CCBRT aims to address all dimensions of access to care.

Evidence shows that CCBRT addresses appropriateness in relation to service providers through disability
awareness training for service providers, whose pre- and post-training results show increased awareness
of inclusion. However, there is inconclusive evidence for other access-related outcomes. 252,574

Community-Based Interventions

 Community-Based Rehabilitation in Thailand

In Thailand, an action research team co-developed a CBR approach for rural sub-district in Thailand,
based out of Kosum Phisai Hospital and its associated primary care units. Group meetings for PWD,
caregivers and community members were organised. Together, these groups co-developed action plans
for PWD access to home health care and assistive devices over a period of three months. The action
plan included: (a) development of guidelines by physical therapists and community nurses for providing
home health care and assistive devices PWD and an instruction manual for village health volunteers; (b)
three training courses for village health volunteers on the guidelines; and (c) village health volunteers
undertaking home visits with supervisory support from administrative staff, nurses, and physical
therapist, and local headmen. Over a period of three months, the team aimed to conduct a home visit
with each PWD at least once per month.

The CBR programme of Kosum Phisai Hospital aimed to address all five dimensions of access to services
for PWD.

Evidence showed an increase in competency of the village health volunteers in providing home care
and assistive devices through the training programme. After the implementation of the three-month
action plan, the proportion of PWD receiving monthly home care increased from 33% to 72%). Those
receiving assistive devices suited to their disabilities increase from 33% to 58%. 575

School-Based Interventions

 Mokihana Program
47
School based mental health services Mokihana Program is school-based mental health services
programme providing culturally responsive, school-based behavioural health services, supported by
both the departments of health and education. Services from both departments are integrated and co-
located within the same organisational structure, which allows for the programme to offer
comprehensive, effective interventions within a coordinated care model. Mental health and behavioural
services provided include: crisis intervention referral, case management, clinical psychological
evaluations, psychiatric evaluations, medication monitoring, individual, group, and family therapy,
school consultation, Multisystemic Therapy, Functional Family Therapy, intensive in-home therapy,
therapeutic foster/transitional family homes, community-based residential treatment programs,
hospital-based residential programs, and acute psychiatric care. Service providers are multicultural staff
who are guided to embrace the Hawaiian cultural practice of ‘ ohana, which emphasises family support
and social connection beyond the traditional Western construct of the nuclear family.

The Mokihana Program aims at addressing all dimensions of access to services for PWD.

Evidence for the Mokihana Program centres around behavioural and mental health outcomes, rather
than access outcomes. 576

Individual-level Interventions

 Life Improvement for Teens (LIFT): Online Trauma-Focused Intervention

Life Improvement for Teens (LIFT) is an online trauma focused intervention for adolescents to
complement school-based mental health services. Life Improvement for Teens (LIFT) is an on online
trauma focused intervention for adolescents. LIFT components were drawn from evidence-based trauma
interventions for trauma that utilises a cognitive-behavioural approach to address symptoms of anxiety,
depression, and trauma. LIFT aims to identify adolescents who may require additional services with a
mental health service provider, which can be delivered at the school level.

LIFT aims to address approachability, accessibility, and affordability of mental health services.

Evidence on LIFT shows that its users find it feasible and acceptable, with moderate satisfaction. 577

Advocacy

 African Network on Evidence to Action on Disability

African Network on Evidence to Action on Disability’s (AfriNEAD) vision is assist in the translation of
existing and new research in the disability arena into meaningful evidence-based advocacy, practice,
products and policy. AfriNEAD developed a network, organised into working groups. The Working
Groups are tasked with identifying action pathways and producing Best Evidence-to-Action Research
Practice Guidelines for use in individual county contexts. AfriNEAD supports research in specific
countries using the guidelines as well as translation of the evidence into action. AfriNEAD supports a
Symposium that serves as a platform for the dissemination and utilisation of research, at least once
every three years. Finally, AfriNEAD links actors the sectors of disability, academia, business, government
and civil society in Africa through Disability, Academics, Business, Government and Civil Society
Consortium.

AfriNEAD aims to address upstream factors related to all dimensions of access, but focuses on
approachability.

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No evidence for impact on access to care was found in the literature; only a description of the
intervention. 578

5.2. Promising Interventions for Increasing Access to Health Services for PWD – Sierra Leone

An overview of promising interventions for increasing access to health services for PWD in Sierra Leone
by access dimension is presented in Table 4. Each intervention, its target access dimensions and
evidence is described below.

Table 4 Promising interventions for increasing access to health services for PWD in Sierra Leone by access dimension

Appropriateness
Approachability

Acceptability

Affordability
Name of Intervention Intervention type

Availability
Sustainability Analysis Tool (SAP) Implementation 211 Policy x
Guest lecturers at College of Medical and Allied Health Sciences 579 Training x
MedicineAfrica 580 Training x
Comprehensive Care for Ebola Survivors (CPES) 581,582 Comprehensive care x x x x x
Clinical Epilepsy Hub 583 Comprehensive care x x x
Comprehensive Eye Care in Sierra Leone Project 584 Comprehensive care x x x x
Many Voices Collaborative in Community-Based Health Care585 Comprehensive care x x x x
Enable the Child (ETC) 586,587 Community-Based x
Acceptance and Commitment Therapy (ACT) intervention 210,556 Community-Based x
Youth Readiness Intervention (YRI) 201,525 Community-Based x
Community Association for Psychosocial Services 551 Community-Based x x x
Psychosocial First Aid (PFA) 198,506 Community-Based x x
Street Workers Programme 281 Community-Based x x x x
Sierra Leone Association of the Blind Community-Based Community-Based
x x x x
Rehabilitation (CBR) Programme 365
Mental Health Leadership and Advocacy Program (mhLAP) 503 Advocacy x
Sierra Leone Autism Council 588 Advocacy x
Mental Health Coalition 218 Advocacy x
Mango Tree Programme, Pikin-to-Pikin Tok 589 Health Education x x
FHCI Participatory Monitoring and Evaluation Programme 490,590 Accountability x x x
FHCI Community Monitoring Score Cards 490 Accountability x x x
FHCI Non-Financial Award Programme 490 Accountability x x x
FHCI Mixed Methods Programme 490 Accountability x x x

Policy Interventions

 Sustainability Analysis Tool (SAP) Implementation

The Sustainability Analysis Process (SAP) is a tool that supports a participatory approach to attaining
consensus between physical rehabilitation stakeholders on national priorities, a collective vision on what

49
the rehabilitation sector should be working towards as a whole by analysing and measuring system
sustainability. In Sierra Leone, between 2009 and 2012, Handicap International and the International
Centre for Evidence on Disability at the London School of Hygiene and Tropical Medicine initiated a
joint support to practitioners and decision-makers to utilise the SAP. The SAP supported a sustainability
study and follow-on engagement workshops. The implementation resulted in a consensus on priorities
for the rehabilitation sector and sector-specific sustainability information to assist in strategic planning
for the sector. 211

The SAP implementation aims to address health systems factors and, ultimately, availability.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

Training of Health Care Providers

 Guest lecturers at College of Medical and Allied Health Sciences

Supporting the training of future health care providers in disability-specific knowledge and service
delivery aims to address availability of services in the future. For example, a diaspora visiting neurologist
provides guest lectures to medical students in neurology when he is in Freetown. 579

Training of students in medical and allied health sciences aims to address availability of services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 MedicineAfrica

MedicineAfrica is an online health facility which enables doctors and other healthcare professionals to
receive clinical support and training live from faculty and clinical supervision around the world
interacting in small groups.

MedicineAfrica aims to address availability.

Use of eHealth and electronic resources to facilitate access to mental health specialists has been viewed
positively by some health workers in Sierra Leone. 580

Comprehensive Care

 Comprehensive Care for Ebola Survivors (CPES)

The Comprehensive Care for Ebola Survivors (CPES) is MoHS- and MoSWGCA-led programme aimed at
improving the well-being of EVDS by providing basic and specialised health care and support to recover
their livelihoods from 2016 through 2018. Health-focused CPES activities were led and coordinated by
a district coordinator and implemented by survivor advocates and their survivor advocates supervisor,
providing psychosocial support to EVDS at the community level and facilitating their access to health
services; clinical training officers in charge of providing clinical mentorship at the primary care level; and
referral coordinators at secondary and tertiary hospitals facilitating referrals through the continuum of
care. 581

CPES aims to address all five dimensions of access.

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Both a baseline and an endline survey were completed for CPES which serve as evidence for its impact
on access to health services. At baseline, 89% of EVDS sought care a health facility compared to 96% at
endline. Only 1.3% sought care outside of the facility at endline, compared to 8.7% at baseline. This is
evidence of a descriptive upward trend in utilisation of services. No increase in referrals were found
between the baseline and endline, but coordination for care and referrals were supported by qualitative
evidence. Health care providers reported perceived readiness to provide quality services to EVDS.
Perceived stigma of health care providers by EVDS decreased from 13% between the baseline and
endline surveys. 582

 Clinical Epilepsy Hub

Medical Assistance Sierra Leone and the Epilepsy Association supported a consultant neurologist to
train all the mental health nurses nationwide in epilepsy treatment and diagnosis in 2017. The teams
stablished three Clinical Epilepsy hubs, in Freetown, Kabala, and Bo, with Epilepsy Support Workers
based at each centre to support outreach work in the community, religious centres, schools, and with
community leaders. In addition, the team trained 600 health workers across 12 centres and is currently
developing a module for pre-service training for doctors and nurses. 583

Clinical Epilepsy Hubs aims to address approachability, acceptability, and availability of services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Comprehensive Eye Care in Sierra Leone Project

Sightsavers’ Comprehensive Eye Care in Sierra Leone Project focused on four objectives: (1) support the
National Eye Health Project to strengthen health systems through improved human resources for eye
health; (2) effectively integrate Primary Eye Care services into primary health care through support to
peripheral health unit staff; (3) develop and improve community participation in preventive eye health
activities; and (4) reduce Vitamin A deficiency-associated blindness and mortality. The project offered
the following services: cataract and other eye surgeries, medical interventions, school-based screening,
refractions and spectacles provision, health education, and vitamin A supplementation nationwide.
Health care workers trained included: 4, 058 PHU staff, 1 ophthalmologist, 18 ophthalmic CHOs, 23
ophthalmic nurses 89,226 CHWs, 1 optometrist assistant, 14 low vision staff, and 1 technician.

Comprehensive Eye Care in Sierra Leone Project aims to address approachability, availability,
affordability, and appropriateness dimensions of access.

Evidence for Comprehensive Eye Care in Sierra Leone Project impact on access came in the form of a
project evaluation, which relied on project data and qualitative inquiry. However, it found increase in
human resources for eye health and increase in service provision, including comprehensive outreach
screening services. The evaluation concluded the project had a ‘significant impact’ on improving the
accessibility and quality of eye health services through a combination of enhanced awareness, increased
service provision, and reduced financial barriers to services. 584

 Many Voices Collaborative in Community-Based Mental Health Care

Partners in Health (PIH) strengthen screening and access to quality, evidence-based treatment of
common mental disorders (CMD) in Kono district in the Many Voices Collaborative in Community-Based
Health Care. The programme provides ongoing psychosocial support, accompaniment, and referral to
care for patients with common mental disorders. A specialized cadre of mental health community health
workers case-find, provide psychosocial support, and link people to care. Community-based
51
psychosocial counselling and homelessness services are offered by social workers in Kono district.
Patients can be referred to care at the Kono Government Hospital’s mental health clinic, which provides
psychiatric care with a psychiatrist, trained CHO and cadre of mental health nurses.

Many Voices Collaborative in Community-Based Health Care aims to address approachability,

availability, affordability, and appropriateness dimensions of access.

Evidence for Many Voices Collaborative in Community-Based Health Care is limited to programme
description. 585

Community-Based Interventions

 Enable the Child

Enable the Child (ETC) is a program run by World Hope International that provides Physical and
Occupational Therapy, care and support services to children with disabilities and their families in their
homes and teaches families and caregivers how to support children with disabilities using play,
developmental positioning, and feeding support.

ETC is designed to address access to community rehabilitation services by addressing the availability of
services.

Evidence for ETC addressing availability of services is descriptive. ETC has supported 800 children in the
Freetown area. In 2018, 519 children were admitted into the program, 1,461 home visits were conducted,
and 490 visits were conducted to children with behavioural issues. Finally, 227 pieces of enabling
equipment were provided, including wheelchairs, chairs, standing frames, leg gaiters, and foot-drop
supports. 586,587

 Acceptance and Commitment Therapy (ACT) intervention

Acceptance and Commitment Therapy (ACT) is a behaviourally-based, transdiagnostic approach

psychotherapy model based on cognitive-behavioural therapy (CBT). ACT techniques can be adapted
and applied to promote more adaptive behaviours that alleviate suffering and distress for persons with
trauma or surviving gender-based violence. 556 ACT has been introduced and adapted in Sierra Leone,
with training workshops conducted in Bo and Freetown. 210

ACT aims to address availability of evidence-based, community mental health services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Youth Readiness Intervention (YRI)

The Youth Readiness Intervention (YRI) is a CBT–based group mental health intervention for
multisymptomatic war-affected youth (aged 15–24 years). The intervention is delivered by social workers
in modular 10-session format. The YRI has been tested in a feasibility pilot and a randomised-controlled
trial with resulting evidence to show acute improvements in mental health and functioning, including
emotion regulation, as well as longer-term effects on school engagement and behaviour, with the
greatest benefits for ‘high-risk’ youth.

The YRI aims to address availability of evidence-based, community mental health services.

52
No evidence for impact on access to care was found in the literature, as the scientific evidence was
focused on health and functioning outcomes, not access. However, youth attendance at sessions was
reported to be on average 6.3 sessions out of ten attended, with more than 50% of youth attending
75% or more of the sessions. However, even these results are from the context of an randomised-
controlled trial setting, rather than an implementation context. 201,525

 Community Association for Psychosocial Services

The Community Association for Psychosocial Services (CAPS) is local organisation that provides multiple
interventions to provide psychosocial and clinical care in the area of mental health, including during
emergencies. CAPS offers individual, family, and group psychosocial counselling in Kono and Kailahun
and also supports community advocacy. 551

CAPS aims to address approachability, acceptability, and availability of community-based mental health
services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Psychosocial First Aid (PFA)

Psychosocial First Aid (PFA) was described as being deployed during the Ebola outbreak. PFA aims to
impart skills on managing and coping with anxiety and stress and referral to mental health services. One
practitioner described training of the mental health nurses to act as supervisors and general healthcare
workers to deploy PFA. 198 Another iteration of PFA was described by the Sierra Leone Red Cross Society
supports the Children’s Advocacy and Rehabilitation (CAR) centre in Kailahun, which focused on social
mobilisation and capacity building for community-based psychosocial intervention during the Ebola
outbreak. CAR trained counsellors to provide weekly phone supervision to community-based volunteers
who undertook community-level social mobilisation and psychosocial support to Ebola-affected
communities. 506

PFA aims to address approachability and acceptability of mental health services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Street Workers Programme

Street Child Street Workers Programme is focused on providing wholistic support to children connected
to the streets. Street Workers personnel (teachers and/or social workers) use introductory games and
activities relationship building with the children, who are then invited to participate in informal
education and counselling/discussion groups. The programme includes provision for basic needs,
including medical care. In addition, other needs such as food, clothing, financial support, and family
tracing services are offered by a dedicated social worker. 281

Street Works Programme aims to address approachability, acceptability, availability, and affordability of
mental health services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Sierra Leone Association of the Blind Community-Based Rehabilitation (CBR) Programme

53
The Sierra Leone Association of the Blind (SLAB) has a mandate to advocate on behalf of those with
vision impairment to increase their independence, their voice and their status in society, ensure they
know their rights, and to help them develop appropriate skills through training. SLAB has approximately
2,500 members across five districts supported by Vocational Centres and Community Based
Rehabilitation (CBR) programmes. 365

SLAB’s CBR programme aims to address approachability, acceptability, availability, and affordability of
community-based rehabilitation services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

Advocacy

 Mental Health Leadership and Advocacy Program (mhLAP)

The Mental Health Leadership and Advocacy Program (mhLAP) is regional program in Anglophone West
Africa that aims to (a) building for mental health leadership and advocacy; and (b) develop stakeholder
groups to identify and pursue country-specific mental health service development needs and targets.
503

mhLAP aims to address upstream factors related to all dimensions of access, with a specific focus on
approachability of services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Sierra Leone Autism Council

The Sierra Leone Autism Council is network of partners in autism awareness and advocacy and service
provision organisations. The Sierra Leone Autism Council aims to build awareness around the history of
autism in Sierra Leone, benefits of partnership, and networking for social action. 588

The Sierra Leone Autism Council aims to address upstream factors related to all dimensions of access,
with a specific focus on approachability of services.

No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 Mental Health Coalition

The Mental Health Coalition-Sierra Leone was founded in 2011, with membership from service users
and their family members, service providers, NGOs, government, and civil society. The MHC’s stated
purpose is to create a national body that empowers stakeholders to advocate for their needs to raise
the profile of mental health in Sierra Leone. 218

The Mental Health Coalition aims to address upstream factors related to all dimensions of access, with
a specific focus on approachability of services.

54
No evidence for impact on access to care was found in the literature; only a description of the
intervention.

 SEND Governance in Health Project

SEND, an NGO, - started implementing a ‘governance in health’ project in the remote district of Kailahun
in 2011. With support from Christian Aid and EU funding, SEND monitors the performance of all 76
primary healthcare units (PHUs) in Kailahun Sierra Leone was founded in 2011, with membership from
service users

Health Education

 Mango Tree Programme, Pikin-to-Pikin Tok (PtPT)

The Pikin-to-Pikin Tok (PtPT) programme was started in Kailahun as a response to the Ebola outbreak
by Pikin-to-Pikin when it re-designed its ‘Getting Ready for School’ programme. PtPT itself had several
components, including young journalists, radio programmes, radio distribution, listening groups, and
panel discussions following radio broadcasts. The Under the Mango Tree programme was a radio
programme targeted 12-18 year olds, specifically on topics related to Ebola, such as stigma, social
exclusion, disability, and sexual violence. The programmes promoted skills for coping with difficult
circumstances requiring care and support, including bereavement. They also targeted parents with
messages about positive parenting, parent-child interactions, and the importance of education.

The Mango Tree Programme aims to address approachability and acceptability of services.

Positive impacts have been described in regards to the full programme in terms of successful awareness
raising, but not in terms of reducing stigma. However, the Under the Mango Tree programme itself only
has been described. 589

Accountability

 FHCI Participatory Monitoring and Evaluation Programme

SEND implemented its Participatory Monitoring and Evaluation (PM&E) programme in 80 PHUs
Kailahun district in 2012-2014 to ensure that the FHCI was implemented effectively. PM&E brought
together health workers, district health authorities and community members to co-develop a checklist
for use at clinics. On an annual basis, the groups assessed each PHU using the checklist. The best
performing small, medium and large PHUs in the districts were awarded prises (a motorbike and cash)
as well as public recognition through its MDG award. 590

PM&E Programme aims to address availability, affordability and appropriateness of services.

PM&E has been evaluated and documented small changes in behaviour of PHU staff, including a
reduction in absenteeism and an increase in vaccine visits to remote communities. In addition, the PM&E
programme has been credited with positive changes in the service delivery at clinics, including PHUs
opening on time and through out the day, friendlier staff behaviour towards patients, improvements in
maintenance of hand washing and toilet facilities, and the display of cost recovery drug price lists. In
addition, it was successful in reducing payments for free care. 490

 FHCI Community Monitoring Score Cards

55
Community monitoring score cards were piloted and tested as part of a randomised controlled trial in
23 PHUs in Tonkolili district in 2013-2014. Health workers and community representatives held three
dialogue sessions over a period of six months to discuss behaviour change for health care staff. An NGO
collected the community’s basic health indicators and presented them using score cards at the dialogue
sessions.

Community monitoring score cards aims to address availability, affordability and appropriateness of
services.

Community monitoring score cards has been evaluated and documented small changes in behaviour
of PHU staff, including a reduction in absenteeism and an increase in vaccine visits to remote
communities. However, results also indicated that the dialogue sessions were utilised for health
education messaging or were reluctant to address community members concerns of
appropriateness in delivery FHCI. And finally, it was not successful in reducing claims for payments
for free services. 490

 FHCI Non-Financial Award Programme

Non-Financial Award Programme was piloted and tested as part of a randomised controlled trial, the
same trial as mentioned above for community monitoring score cards, in 23 PHUs in Tonkolili district in
2013-2014. Health workers at PHUs were told of their relative ranking, compared to other facilities in
the district, on key maternal and child health indicators. Health workers were encouraged to design
improvement plans based on this information and informed of non-financial prise (certificates and
clock) if their ranking improved.

Non-Financial Award Programme aims to address availability, affordability and appropriateness of

services.

Non-Financial Award Programme has been evaluated and documented small changes in behaviour
of PHU staff, including a reduction in absenteeism and an increase in vaccine visits to remote
communities. However, it was not successful in reducing claims for payments for free services. 490

 FHCI Mixed Methods Programme

Mixed Methods Programme was implemented in 10 PHUs in Kono district in 2014. The programme
consisted of ‘quality circles’ in which health workers and community representatives from Facility
Management Committees (FMC) would conduct a dialogue session, including results of short surveys
for health service satisfaction among community members. The FMC members were trained to collect
data on patient utilisation and facility deliveries. The programme also supporting a radio listening
component, budget literacy training, and construction project at each clinic with the aim to reinforce
the relationship between the health workers and community members.

Mixed Methods Programme aims to address availability, affordability and appropriateness of services.

Mixed Methods Programme has been evaluated and documented small changes in behaviour of PHU
staff, including a reduction in absenteeism and an increase in vaccine visits to remote communities.
However, it was not successful in reducing claims for payments for free services. 490

56
57
 DISCUSSION

Below, the main findings are presents and discussed in relation to access and dimensions of access to
services for PWD. Then the quality of the evidence presented in the literature review, by discussing the
global and the Sierra Leone-specific evidence. Finally, the way forward in the research study is detailed
through the next steps based on the literature review results.

6.1. Findings

Prevalence estimates for PWD in Sierra Leone vary between 1-9%, depending the data source and
measurement approach utilised. Proportion of functional disability is highest among children. The
evidence points to the fact that Sierra Leone has unique causes of disability related to humanitarian
situations, including the civil conflict and the EVD outbreak. However, there remain gaps in
understanding the prevalence and etiology of functionality disability. Moreover, a focus on disability
across the life course, including childhood through adolescence and into old age, was absent from the
Sierra Leone literature, as was a focus on related service needs for the support of such transitions in
care.

The little evidence on general health service needs of PWD compared to persons living without disability
in Sierra Leone, and as such the eividece does not point to a clear trend. However, there is clear evidence
of unmet need generally. For disability-specific services, the majority of the literature focuses on specific
groups defined by either by the cause of impairment or service delivery need. There is clear evidence
for the gap in mental health services, rehabilitation for EVDS, infectious disease screening and surgical
care.

6.1.1. Approachability

For approachability of services for PWD in Sierra Leone, evidence on health beliefs was a strong theme,
including beliefs relating to the origins of disability and the appropriateness and effectiveness of
traditional healing for impairment-specific and general health needs. Shame and stigma related to both
Ebola and survivorship as well as teenage pregnancy were also presented in the evidence.

However, the literature review revealed less about supply-side component of approachability in Sierra
Leone. Results relating to whether PWD in Sierra Leone are able to identify health services, including
through transparency of such services was not found. Similarly, whether PWD in Sierra Leone are
accessing outreach, screening, and information campaigns related to health services was not
determined by the literature review.

However, we can infer from the global evidence from LMICs in sub-Saharan Africa some aspects of
approachability which may apply to PWD in Sierra Leone. PWD, their families and communities in Sierra
Leone may have less access to information which can inform their perception of their need for services.
They may also be unaware of disability-specific services available. Views on sexuality of PWD may be
undermining SRH rights and access to services.

6.1.2. Acceptability

The literature in Sierra Leone for acceptability of health services focused mostly on norms of origins of
disease and disability as well as traditional and cultural medicine. in Sierra Leone related to both the
type of impairment and also the expected effectiveness. In addition, social norms related to political
promotion of health seeking behaviour emerged.

58
The evidence from Sierra Leone centred around belief systems, and less around social differences, such
as the social group of the health provider, including how this relates to language and communication.
Individual components of supply-side acceptability such as personal autonomy, capacity to choose and
seek care were not discussed in the literature from Sierra Leone.
In the global literature, viewpoints on reduced agency of PWD emerged as a factor in access to care,
particularly in relation to care taking the viewpoint of care providers. While stigma relating to access to
services for impairment-related needs was cited in the global literature, the repercussions of such stigma
in Sierra Leone tended to relate more to violence and neglect, rather than only reduced social status.

6.1.3. Availability

Lack of available services focused on impairments-specific services such as those relating to mental
health and EVD sequelae. For general health services, human resources for health was a strong theme,
including human resources for general services, disability-specific services, and task shifting. Issues of
distance to facilities, high service demand, overcrowding, and lack of medical supplies at facilities
emerged as well.

The Sierra Leone literature on availability of disability-specific services focused on mental health and
EVD sequelae, but less so on other types of disability-specific services, such as rehabilitation. The
evidence from Sierra Leone also did not discuss issue relating to urban space and decentralisation of
the provision of services. Additionally, personal mobility of PWD, physically reaching services, and the
physical infrastructure of service locations did not emerge from the Sierra Leone findings, as was the
case for occupational flexibility to allow for PWD to access services.

Additional themes that emerged in the global literature relating to availability may apply to the Sierra
Leoenean context. Barriers such as security when travelling and lack of accommodation at health
facilities can compound distance to services for PWD. Physical accessibility within health facilities,
including the design of the clinic infrastructure and health equipment, as well as lack of medical supplies
not only to general services but also to disability-specific services, such as rehabilitation, can affect
availability of services for PWD. In addition, issues around service capacity can be compounded for PWD
as often they require additional time required in clinical consultations. Finally, while human resources
emerged as a theme in the Sierra Leone literature, providers’ skills and knowledge relating to disability
primary conditions and comorbidities was not discussed and has found to be barriers to availability of
services in the global literature.

6.1.4. Affordability

In Sierra Leone, evidence emerged relating to costs for transportation, user fees and opportunity costs
borne by the household for PWD accessing services, even with some evidence of higher household
expenditure on health for households with PWD. Despite FHCI, the need to pay fees for FHCI services
at times was evident. In addition, affordability is a barrier for orthotic and prosthetic devices.

While poverty was touched upon in the evidence, unpacking how poverty related to affordability of
access to services for PWD was absent from the Sierra Leone evidence. In addition, no evidence emerged
on social isolation and indebtedness of PWD and affordability of services neither in Sierra Leone, nor
the global literature.

59
6.1.5. Appropriateness

In the evidence from Sierra Leone, several themes emerged on appropriateness of services for PWD.
Evidence on satisfaction of care was mixed for PWD. However, inadequacy of diagnostic tools and
treatment protocols for impairment-specific services developed in several studies. Inadequacy of referral
services was also discussed, as was the need for stronger inter-sectoral coordination for services for
PWD. Finally, the need for involvement of PWD in policy, programmes, and interventions was pointed
to in the literature.

The literature from the Sierra Leone context did not address all components of appropriateness. On the
supply side, no sources discussed which services are provided, their quality, and their timeliness in
relation to the needs of PWD. In addition, the issue of care in relation to health assessments and
determining correct treatment was not discussed beyond diagnostic tool and one study which
mentioned concern related to overmedication in mental health services. On the demand side, the
capacity and motivation of PWD to participate in care and commit to its completion was not discussed.
Finally, care that is appropriate for the individual PWD based on his/her given resources and skills was
not discussed.
More evidence is needed to understand if factors related to appropriateness that emerged in the global
literature may apply to PWD in the Sierra Leonean context. Interpersonal skills of the care provider and
infective communication related to care concerns, including diagnostic overshadowing, may affect
quality of care for PWD. Lack of provision for sufficient information to involve PWD in health care
decision making may also be concerns.

Table 5 Sierra Leone Key Findings by Access Dimension & Components

Access Dimension & Components Sierra Leone Key Findings

Health service can be identified

Supply side

Transparency
Outreach
Approachability

Information
Screening
Decline treatment due to lack of health knowledge
Demand side

Health literacy and knowledge

Beliefs related to health and illness
EVDS perceive not appropriate because health workers
Perceived appropriateness to seek care
Cultural and social factors determining
acceptance of services
Supply side
around sensory disability
Beliefs relating to origin of disability
Stigma related to teenage pregnancy
Stigma related to Ebola
afraid
Cultural understanding of disability

Sex or social group of providers

EVDS view traditional and cultural medicine as more
Acceptability

acceptable
Beliefs associated to systems of medicine Traditional healers as more culturally appropriate
treatment for PWD

Political support to FHCI has indirect positive effect on

Demand side

Ability to seek health services

norms for care seeking
Personal autonomy and capacity to
choose to seek care
Knowledge about the health care options
60
 Individual rights to express intent to Community acceptance and social support linked to
obtain health care better health outcomes for trauma and obstetric fistula
Facility/physical space Distance to health facilities not addressed
Delays in FHCI services, including referral
Timely services
Overcrowded facilities and wait times
Urban space and decentralisation
Limited health workforce
Supply side

Limited mental health specialists

Service providers
CHWs
Availability

More traditional birth attendants available

Limited availability of medicines at primary care
Limited psychosocial support services
Mode of provision of services
Limited EVDS-specific services
Surgical and obstetric services
Physically reach services
Supply side Demand side

Personal mobility
Availability of transportation Transportation to facilities
Occupational flexibility
Knowledge about health services
Resources and time to use services and Households with PWD with severe disability spend
not require catastrophic expenditure more on health services
Indirect costs Transportation costs for self and carer
Opportunity costs Child care
Affordability

Economic capacity to spend resources Women PWD may not be able to make financial
and time decisions in household
Demand side

Ability to pay PWD report difficult to pay for services

Capacity to generate economic resources
PWD likely to be unemployed
(savings, borrowing, loans)
Poverty
Social isolation
Indebtedness
Adequacy of services leads to trust and future care
Adequacy of services
seeking in primary care
Which services are provided and their
quality
Match between services and clients’ need Appropriate diagnostic tools
Timeliness of services
Amount of care spent assessing health
Supply side

problem and determining correct

treatment
Clinical training for providers
Technical quality
Appropriateness

Overprescribing of psychotropic medication

Interpersonal quality Stigma in accessing care
Low utilisation of referral services
Coordination and continuity
Poor coordination of services across sectors
Possibility to choose acceptable and PWD with psychosocial disability and the ability to
effective services select appropriate services
Ability to engage in health care or
Involving PWD in health policy making and intervention
participation in decision-making and
development
treatment decisions
Demand side

Capacity and motivation to participate in

care and commit to its completion:
capacity to communicate, health literacy,
self-efficacy, self-management
Receiving care that is appropriate for the
person, given resources and skills

61
6.1.6. Promising Interventions

The findings on promising interventions showed a concentration of interventions that address

comprehensive care at the primary care level; community-based services; and awareness raising. We did
not find any examples of transitional services. Surprising, despite its potential, no interventions
incorporating telemedicine were found. The only school-based intervention presented were eye health
screening. And finally, no individual-level interventions were found in the evidence. These areas
represent opportunities for testing feasibility of proven intervention models from the global evidence
in the Sierra Leonean setting.

6.2. Quality of Evidence and Measurement

Global evidence on PWD access to health services was variable and often conflicting. No clear patterns
emerged, with the exception of within specific groups of persons, services, and contexts. Systematic
reviews reveal a high level of variation of access in different studies, even if the type of impairment,
services type, and country context were the same. 591 Measurement of type of impairment, service type
and access indicator were highly variable across studies, and often times, of low quality. Thus,
comparisons and generalisability were difficult. 591 However, qualitative evidence on barriers to access
may be informative insofar as driving hypotheses to test in the Sierra Leonean context. In the global
literature, availability and affordability were the dimensions of access with the most varied evidence
across studies.

Evidence on PWD access to health services in Sierra Leone tends to be fragmented, in that studies focus
on either access by groups of people by impairment type (e.g., EVDS) or by service type (e.g., eye care
services). However, few studies addressed access to health care by PWD as a cohesive group compared
persons without a disability, with a supportive study design to allow for statistically significant
comparisons, with a few exceptions.

This trend may reflect the fact that there is no agreed operational definition of disability in Sierra Leone
and the subsequent challenges for identification and measurement. In order to develop evidence on
the prevalence, health status, and health needs of PWD, a consensus of on the definition of disability in
Sierra Leone is required, as is an operational definition for measurement. Recent adoption of the ICF
definition of disability and integration of WG questions into national surveys is step towards this aim.
However, further development of the use of the ICF and the WG questions in the Sierra Leone context
is required. As the ICF model is normative, its application requires normative setting of thresholds. 592

Further integration of such methods into primary research data collection and in routinely collected
data by service providers is needed, and can be integrated into ongoing efforts to strengthen
monitoring and evaluation in the health sector. 593,594 A systematic approach to measurement can
support the development of key indicators of access and coverage of services for PWD in order to
monitor progress towards the SDGs for PWD, effectively plan programmes and produce evidence to
support such planning. Even further, clear definitions on specific services, such as rehabilitation, and
how coverage and access are measured are required. Additionally, it is important to consider that
additional clinical information related to impairment, beyond functioning, may be required to effectively
plan services. Finally, equity needs to be taken into consideration, and as such, disaggregation of data
by key variables, such as age, gender, socioeconomic status, and locality is needed. 32 Furthermore, such
62
measurement consistency, with the support of appropriate screening tools, can translate into
opportunities for screening programmes to increase identification and access to services.

For evidence relating to interventions, most evidence from Sierra Leone was descriptive rather than
comparative, not allowing for a robust understanding of effectiveness. In addition, not all evidence
measured access outcomes in addition to heath outcomes. In the global literature, approximately 60%
of impact evaluations of interventions consider equity. However, this was mostly in relation to
stratification by urban/rural residence or socioeconomic status. Rarely was whether or not people live
with disabilities considered. 595 In a review on inequalities research, few interventions found looked at
PWD. 596

6.3. The Way Forward

The results of this literature review will inform the next steps for the research team for sub-studies two
(equity of access to health care for PWD) and three (case studies of promising interventions to increase
access to health services for PWD and adolescents). Below, we outline the specific steps for each study,
after a stakeholder consultation.

6.3.1. Stakeholder consultation

The results of this literature are not exhaustive, and additional resources will be sought through the
dissemination of these preliminary results. Therefore, the results will be shared and validated through a
stakeholder consultation. The stakeholder consultation will include the research team, the TAG, and
stakeholders across governmental and non-governmental sectors, as well as representatives of the
target populations themselves. Stakeholder feedback will be sought on validation of findings and
additional leads on grey literature or information regarding interventions in Sierra Leone which were
not obtained through the methodology of the literature review.

6.3.2. Sub-Study Two

To inform sub-study two, the research team will utilise these results to (a) inform a prioritisation process
to identify specific targets for the analysis of secondary quantitative data; and (b) identify sites for the
qualitative data collection.

Prioritisation of equity strata for quantitative component

For sub-study two, the research team will utilise these results to inform a prioritisation process to identify
specific targets for the analysis of secondary quantitative data. The research team will undertake the
following steps:

1. Map indicators and equity stratifiers against available data sources

The research team will map equity stratifiers and available data sources per indicator. We will drop
indicators if data are not available to calculate the indicator, or if no equity strata can be calculated
using the data set nor through linkage to another data set. The research team will present the results in
a table format.

2. Rate each mapped indicator against the literature review results

63
Next, the research team will compare the results of the literature review, specifically the identified
priority health areas, factors related to access dimensions, and equity strata for PWD in relation to
accessing health services in Sierra Leone, with the mapped data sources and potential indicators.

The research team will identify three raters who will use a set of rating categories adapted form Veillard
et al., 597 including importance/relevance; reliability; validity; and feasibility to rate each indicator on a
scale from 1 (not at all) to 5 (very strong). Three research team members will score each indicator across
the four categories, and an average score will be calculated. The rating results will be presented in the
mapping table for indicators.

3. Prioritise at least two indicators per framework section

The research team will prioritise two indicators for each section of the framework (health area, risk
factors, and each attribute of access) based on the average scores.

4. Discuss results with TAG and select equity stratifiers for each indicator

The results of the prioritisation process will be presented to the TAG and discussed. The discussion will
aim to validate the selection of indicators and finalise selection of equity stratifiers. The research team
will include the fixed urban/rural equity strata in the final list.

The results of the prioritisation process will be used to focus the quantitative analysis of secondary data,
which is the next step in the research process.

Site selection for qualitative component

The results of the quantitative analyses will inform site selection for the qualitative data collection. In
addition to the quantitative results, the research team will also present evidence from the literature review
on potential vulnerable populations and/or risk factors that are not well captured or represented in the
secondary data sources. Some extremely vulnerable populations may not be well represented in routine
data capture, due to lack of service access, and nationally-representative survey methodologies, such as
those that sample based on household accommodation. These may include strata such as migrants, urban
slum dwellers, the homeless, etc. and risk factors such as exposure to violence. The research team and
Technical Advisory Group will also consider such strata for potential inclusion in the final priority list for
site selection.

6.3.3. Sub-Study Three

For sub-study three, the research team will utilise these results to (a) form a preliminary list of promising
interventions; and (b) inform development of selected case studies.

Preliminary list of promising interventions

The research team will utilise the results of the literature review to initiate the ‘long list’ of interventions
for consideration as case studies in sub-study three. The list will then be added through the TAG,
stakeholder consultation, and outreach through its networks of known service providers, including
through the Health NGO group, NCPD, SLUDI, National Secretariat for the Prevention of Teenage
Pregnancy.

Inform development of case studies

If any of interventions from the literature review are selected as case studies, then the research team
will utilise the results of the literature review to inform the development of the case study itself.

64
65
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community guide systematic review. Am J Prev Med. 2016;51(1):114-126.
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611. Kran BS, Wright DW. A telephone survey of low vision services in U.S. schools for the blind and
visually impaired. Optometry. 2008;79(7):378-390. doi:10.1016/j.optm.2007.11.010
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615. Maulik PK, Darmstadt GL. Childhood Disability in Low- and Middle-Income Countries: Overview
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98
ANNEXES

99
8.1. Annex 1: Search terms utilised per evidence database

8.1.1. Global Literature Database Search

Database name, weblink Search

query
Cochrane Library (approachabil*):ti,ab,kw OR (acceptab*):ti,ab,kw OR
https://www.cochranelibrary.com/advanced- (availabil*):ti,ab,kw OR (accommod*):ti,ab,kw OR (afford):ti,ab,kw OR
search/search-manager
(appropriat*):ti,ab,kw
AND
OR MeSH descriptor: [Health Services Accessibility] explode all trees
(Cerebral pals*):ti,ab,kw OR (Spina bifida):ti,ab,kw OR (Muscular
dystroph*):ti,ab,kw OR (Arthriti*):ti,ab,kw OR (Osteogenesis
imperfecta):ti,ab,kw OR (Musculoskeletal abnormalit*):ti,ab,kw OR
(Musculo-skeletal abnormalit*):ti,ab,kw OR (Muscular
abnormalit*):ti,ab,kw OR (Skeletal abnormalit*):ti,ab,kw OR (Limb
abnormalit*):ti,ab,kw OR (Amputation*):ti,ab,kw OR
(Clubfoot):ti,ab,kw OR (Poliomyeliti*):ti,ab,kw OR (Paraplegi*):ti,ab,kw
OR OR (Paralys*):ti,ab,kw OR (Paralyz*):ti,ab,kw OR (Hemiplegi*):ti,ab,kw
(Hearing):ti,ab,kw OR (Acoustic):ti,ab,kw OR (Ear*):ti,ab,kw
AND
(loss*):ti,ab,kw OR (impair*):ti,ab,kw OR (deficienc*):ti,ab,kw OR
OR (disable*):ti,ab,kw OR (disabili*):ti,ab,kw OR (handicap*):ti,ab,kw
OR (Deaf*):ti,ab,kw OR (Blind*):ti,ab,kw
(Schizophreni*):ti,ab,kw OR (Psychosis):ti,ab,kw OR
(Psychoses):ti,ab,kw OR (Psychotic Disorder*):ti,ab,kw OR
(Schizoaffective Disorder*):ti,ab,kw OR (Schizophreniform
OR Disorder*):ti,ab,kw OR (Dementia*):ti,ab,kw OR (Alzheimer*):ti,ab,kw
(Intellectual*):ti,ab,kw OR (Mental*):ti,ab,kw OR
(Psychological*):ti,ab,kw OR (Developmental):ti,ab,kw
AND
(impair*):ti,ab,kw OR (retard*):ti,ab,kw OR (deficienc*):ti,ab,kw OR
(disable*):ti,ab,kw OR (disabili*):ti,ab,kw OR (handicap*):ti,ab,kw OR
OR (ill*):ti,ab,kw
OR (Visual*):ti,ab,kw OR (Vision):ti,ab,kw OR (Eye*):ti,ab,kw
(Intellectual*):ti,ab,kw OR (Mental*):ti,ab,kw OR
(Psychological*):ti,ab,kw OR (Developmental):ti,ab,kw
AND
(impair*):ti,ab,kw OR (retard*):ti,ab,kw OR (deficienc*):ti,ab,kw OR
(disable*):ti,ab,kw OR (disabili*):ti,ab,kw OR (handicap*):ti,ab,kw OR
OR (ill*):ti,ab,kw
(communication):ti,ab,kw OR (language):ti,ab,kw OR (speech):ti,ab,kw
OR (learning):ti,ab,kw
AND
OR (disorder):ti,ab,kw

Europe PMC AND ((KW:"Health Services Accessibility" AND ABSTRACT:"disability") AND

https://europepmc.org/ (FIRST_PDATE:[2010 TO])) AND (PUB_TYPE:"Review" OR
PUB_TYPE:"review-article")
((KW:"Health Services Accessibility" AND ABSTRACT:"mental health")
AND (FIRST_PDATE:[2010 TO])) AND (PUB_TYPE:"Review" OR
PUB_TYPE:"review-article")

100
PsychNet Abstract: disab* AND Abstract: access* OR Abstract: appropriat*OR
https://psycnet.apa.org/search Abstract: afford* OR Abstract: approachab* OR Abstract: availab* OR
Abstract: accomod* AND Abstract: health AND Year: 2000 To 2019
Pubmed OR
https://www.ncbi.nlm.nih.gov/pubmed/ Approachab*[Title/Abstract]
OR
Acceptab*[Title/Abstract]
OR
Availab*[Title/Abstract]
OR
accommod*[Title/Abstract]
OR
Afford*[Title/Abstract]
OR
Appropriate*[Title/Abstract]
OR (((((Appropriate*[Title/Abstract]) OR Afford*[Title/Abstract]) OR
accommod*[Title/Abstract]) OR Availab*[Title/Abstract]) OR
Acceptab*[Title/Abstract]) OR Approachab*[Title/Abstract]
OR
Health Services Accessibility[MeSH Major Topic])
AND
OR ((communication[Title/Abstract] OR language[Title/Abstract] OR
speech[Title/Abstract] OR learning[Title/Abstract])) AND
disorder[Title/Abstract]
OR ((impair* or retard* or deficienc* or disable* or disabili* or handicap*
or ill*)) AND (Intellectual* or Mental* or Psychological* or
Developmental)
OR ((Visual*[Title/Abstract] OR Vision[Title/Abstract] OR
Eye*[Title/Abstract])) AND (loss*[Title/Abstract] OR
impair*[Title/Abstract] OR deficienc*[Title/Abstract] OR
disable*[Title/Abstract] OR disabili*[Title/Abstract] OR
handicap*[Title/Abstract])
OR ((impair*[Title/Abstract] OR retard*[Title/Abstract] OR
deficienc*[Title/Abstract] OR disable*[Title/Abstract] OR
disabili*[Title/Abstract] OR handicap*[Title/Abstract] OR
ill*[Title/Abstract])) AND (Intellectual*[Title/Abstract] OR
Mental*[Title/Abstract] OR Psychological*[Title/Abstract] OR
Developmental[Title/Abstract])
OR (Schizophreni*[Title/Abstract] OR Psychosis[Title/Abstract] OR
Psychoses[Title/Abstract] OR Psychotic Disorder*[Title/Abstract] OR
Schizoaffective Disorder*[Title/Abstract] OR Schizophreniform
Disorder*[Title/Abstract] OR Dementia*[Title/Abstract] OR
Alzheimer*[Title/Abstract])
OR
(Deaf*[Title/Abstract] OR Blind*[Title/Abstract])
OR ((Hearing[Title/Abstract] OR Acoustic[Title/Abstract] OR
Ear*[Title/Abstract])) AND (loss*[Title/Abstract] OR
impair*[Title/Abstract] OR deficienc*[Title/Abstract] OR
disable*[Title/Abstract] OR disabili*[Title/Abstract] OR
handicap*[Title/Abstract])
OR ((Cerebral pals*[Title/Abstract] OR Spina bifida[Title/Abstract] OR
Muscular dystroph*[Title/Abstract] OR Arthriti*[Title/Abstract] OR
Osteogenesis imperfecta[Title/Abstract] OR Musculoskeletal
abnormalit*[Title/Abstract] OR Musculo-skeletal
abnormalit*[Title/Abstract] OR Muscular abnormalit*[Title/Abstract]
OR Skeletal abnormalit*[Title/Abstract] OR Limb
abnormalit*[Title/Abstract] OR Amputation*[Title/Abstract] OR
Clubfoot[Title/Abstract] OR Poliomyeliti*[Title/Abstract] OR
Paraplegi*[Title/Abstract] OR Paralys*[Title/Abstract] OR
Paralyz*[Title/Abstract] OR Hemiplegi*[Title/Abstract]))

101
8.1.2. Sierra Leone Literature Database Search

Database name, weblink Search query

African Journals Online Full text search, 2009-2019,
https://www.ajol.info/ Sierra Leone + disability / mental health
ELDIS Full text search, time restriction not possible
www.eldis.org Sierra Leone + disability / mental health
Google Scholar searched with Publish or Perish Full text search, 2009-2019
method Sierra Leone + disability / mental health
https://scholar.google.com/
NICE Full text search, 2009-2019
https://www.evidence.nhs.uk/ Sierra Leone + disability / mental health
OAISTER, WorldCat Full text search, 2009-2019
https://oaister.worldcat.org/advancedsearch Sierra Leone + disability / mental health
Popline Full text search, 2009-2019
https://www.popline.org/advancedsearch Sierra Leone + disability / mental health
Pubmed Full text search, 2009-2019
https://www.ncbi.nlm.nih.gov/pubmed/ Sierra Leone + disability / mental health
SCIE Full text search, no time restriction possible
https://www.scie-socialcareonline.org.uk/ Sierra Leone + disability / mental health
Social Science Research Network Full text search, our time restriction not possible
http://www.ssrn.com/en/ Sierra Leone + disability / mental health
TRIP Full text search, time restriction not possible (free
https://www.tripdatabase.com/ version)
Sierra Leone + disability / mental health
UCL Discovery Abstract search, 2009-2019
http://discovery.ucl.ac.uk/cgi/search/advanced Sierra Leone + disability / mental health

102
8.2. Annex 2: Promising Interventions for Increasing Access to Health Services for PWD – Global
8.2.1. Global Results – Full
Name of Intervention
User fee exemption
policies (UFEP) 598
Private Health
Insurance 520
Public Health
Insurance 324,570
Rehabilitation of
Persons with a
Psychiatric Disability in
the Community law
599,600
Appropriateness
Approachability
Acceptability
Affordability
Type
Availability
Location
User fee exemption policies (UFEP)
presents an opportunity to utilise public
health services whenever an individual
feels the need without considering cost of
service. Three main conversion factors
influence individuals’ capability space, or SSA x
ability and choice, including: trusting the
providers and health system; aware of
risks associated with condition; and
acceptability of the choice to seek free
care.
Families of children with mental health
care needs had higher annual out-of-
pocket costs, are more likely to reduce
HIC x x
labour market participation, and have
negative health plan experiences
compared to other families.
National Health Insurance policies can
help to increase affordability for PWD to
access services. In 2008, Vietnam
introduced the Health Insurance Law,
which integrated existing schemes into
one national program and identified 24
eligible population groups represented by
the consolidated schemes, including PWD.
The insurance covers a large number of
items and has an expenditure cap of
Vietnam x
roughly USD 35 per episode for high-tech
or high-cost services. In 2010, a co-
payment of 20% was re-introduced,
expect for retirees, the poor, PWD, and
other social beneficiaries who pay a 5%
co-pay.
The National Health Insurance policy in
Vietnam was effective in improving access
to, and financial protection against, public
outpatient care for PWD.
The law enabled three initiatives: basket of
psychiatric rehabilitation services, regional
rehabilitation committees, and the Council Israel x
for the Rehabilitation of Persons with a
Psychiatric Disability in the Community.
103
 The number of persons receiving
psychiatric rehabilitation services over 10
years has increased four-fold.
Mental Health Mental health legislation may call for
Legislation 568,569 mental health services to be integrated
into primary health care and at the
community level; community integration
of persons with mental disorders; the
provision of care of higher quality for both
general and mental health services; and
the improvement of access to care at Global x
community level. Finally, legislation can
help to reduce stigma related to mental
health. Anecdotal evidence exists for the
impact of mental health legislation on
access, with Ghana serving as an example
form the West African context of
introducing a mental health law.
QualityRights Project Project to improve quality and human
601 rights conditions in mental health care
facilities and promote civil society
movement for mental health, including LMICs x
the establishment of visiting committees,
implementation of the QualityRights
Assessment Tool, and advocacy.
African Network on African Network on Evidence to Action on
Evidence to Action on Disability’s (AfriNEAD) vision is assist in
Disability (AfriNEAD) the translation of existing and new
578 research in the disability arena into
meaningful evidence-based advocacy,
practice, products and policy. AfriNEAD SSA x
developed a network, organised into
working groups. AfriNEAD supports
research, a symposium, and cross-sector
networking opportunities.

Collaborative Care for Intervention consists of psychoeducation,

Bipolar Disorder 602,603 simplified practice guidelines, and a nurse
care coordinator. Results from an RCT
showed 92% of unscheduled care was
provided by ongoing clinicians, indicating
HIC x x
continuity of care. Insured children with
special health care needs were more likely
to have a usual source of care and
clinician, less likely to report unmet need
and dissatisfaction with care.
Collaborative care for Collaborative care, an intensified and
anxiety and depression structured collaboration between primary
604 care and specialised psychiatric service
providers is effective for anxiety and HIC x x
depression, increase medication
adherence, and improves patient
satisfaction.
Care managers for Care manager to assist connecting
post-crisis psychiatric patients from emergency to primary care
HIC x x
care 605 services for mental health reported
increased connectivity to care.

104
Nurse practitioner Adding a nurse practitioner to the clinical
based in behavioural care team in a behavioural health setting
health settings for allowed for the increase of access to
services with both the nurse practitioner
PWD with psychiatric
and behavioural health specialists; HIC x x x
disabilities 606
increased time spent with the care
provider; and proved to be more
acceptable for the PWD to access
compared to primary care settings.
Liaison Worker Model Specialist liaison service to assist in
607 accessing relevant services for ethnic
minority youth with intellectual disabilities
with challenging behaviour and mental HIC x x x x
health needs. Families found the service
useful and showed more contact with
services.
Integrated care Integrated care integrates medical and
338,407,572,573 psychiatric services across vertical
programmes. In Uganda, linked
programming and strategies for PWD,
SRH, and HIV increased awareness of PWD
rights and increase access to SRH
information, protection and treatment for
PWD and non-PWD. The strategy includes
activities to: improve women PWD
livelihoods; engage women PWD to
provide inputs into health service
decision-making, planning and delivery; x x x
and to ensure health centre staff have
access to communication resources.
Evidence for integrated care shows
increasing access to mental health services.
Specifically, older populations (65 years
and above) preferred collaborative mental
health treatment to mental health-specific
services, even when transportation services
and costs for both transport and services
were addressed.

Task shifting 569,571 Non-specialist providers provider supports

service delivery, with supportive
supervision by skilled providers. This
approach has been modelled in mental
health care service delivery, screening for
comorbidities, HIV services, rehabilitation
services, and surgical care, among others. LMICs x x
Evidence for task shifting has shown that
such models can increase access and
uptake of services in LMICs, while
supporting community acceptability of
services.

System Enhancement The System Enhancement for Health

for Health Action in Action in Transition Project has been
Transition Project 72 successful in the integration of the Afghanistan x x x
delivery of mental health services into the
Basic Package of Health Services.

105
Lebanon Health Lebanon Health Resilience Project
Resilience Project 72 provides mental health services at primary
health care clinics with the aim of
increasing the access of poor Lebanese Lebanon x
and displaced Syrian populations to
quality health care.

Rural and Remote To provide culturally appropriate

Memory Clinic 554 assessment protocols for dementia
assessment in aboriginal older adults, the
Rural and Remote Memory Clinic
incorporates: telehealth videoconferencing
for a pre-clinic assessment; a one-stop
HIC x x x x
interdisciplinary assessment in a tertiary
care centre providing assessments by a
neurologist, neuropsychology team,
geriatrician, neuroradiologist and physical
therapist; and follow up assessments.

Community and A model of community and primary

primary perinatal perinatal mental health services included:
mental health services screening by health workers as health
Uganda x x x
facilities; Village Health Team community
model 608
identification; and counselling of mothers
at the health facility.
Telepsychiatry for Telepsychiatry for patients in correctional
mental health care 609 facilities provided improved availability,
HIC x x
the continuum, and quality of mental
health care.
Telehealth for cerebral Telehealth has the potential to reduce
palsy 466 travel time for patients and clinicians,
provide access to specialist and HIC x x x
multidisciplinary care, and provide skills
training to health care workers.
Ponseti method for The Ponseti method is a system of service
Clubfoot Treatment 406 delivery involving screening, serial casting
often followed by a percutaneous release
of the Achilles tendon to achieve
correction, and the use of a night time
LMICs x x x
orthosis for several years to maintain
correction. It is widely accepted as the
treatment for clubfoot because it is
minimally invasive and can be performed
by non-surgeon health care providers.
School-based health School-based health centres (SBHCs) offer
centres (SBHCs) 610 primary health care, alongside mental
health care, social services, dental care,
and health education. They increase HIC x x x x
accessibility of services, health knowledge,
patient satisfaction, and reduce costs
related to transportation.
School-based eye At the New England Eye Low Vision Clinic
clinics at schools for at Perkins School for the Blind, a school-
the blind and visually based clinic is staffed by an optometrist HIC x x x x
impairment and an orientation and mobility specialist,
611 who offer eye evaluations, alongside

106
 education specialists from the school. In
addition, outreach to children with deaf-
blindness in the region are offered
through home-based visits using a
transdisciplinary model.

Mokihana Program 576 Mokihana Program is a school-based

mental health services programme
providing culturally responsive, school-
based behavioural health services,
supported by both the departments of
health and education. Services from both
departments are integrated and co-
located within the same organisational HIC x x x x x
structure, which allows for the programme
to offer comprehensive, effective
interventions within a coordinated care
model. Evidence for the Mokihana
Program centres around behavioural and
mental health outcomes, rather than
access outcomes.
Community-based Community-based rehabilitation is a
rehabilitation (CBR) strategy for general community
575,612,613 development that provides rehabilitation,
poverty reduction, equalisation of LMICs x x x x x
opportunities, and social inclusion for all
PWD. Evidence is mixed across different
intervention models and populations.
Tamil Nadu The Tamil Nadu Empowerment and
Empowerment and Poverty Reduction Project created a
Poverty Reduction community support system for persons
with mental health problems and
Project 72
intellectual disabilities in partnership with
mental health professionals and regional India x x x x
service providers. In addition, raising
awareness of PWD to overcome stigma
among health professionals and the
communities was able to increase access
to services.
Comprehensive Comprehensive Community Based
Community-Based Rehabilitation in Tanzania (CCBRT) is a
Rehabilitation in comprehensive, community-based
maternal and new-born capacity-building
Tanzania (CCBRT) 252,574
programme. It aims to: improve the
quality of emergency obstetric and new-
born care; promote friendly care for
pregnant women with disabilities; prevent
obstetric fistula and promote early
Tanzania x x x x x
identification of birth impairments; and
identify and refer children with birth
impairments. Evidence shows that the
intervention addresses appropriateness in
relation to service providers through
disability awareness training for service
providers, whose pre- and post-training
results show increased awareness of
inclusion. However, there is inconclusive

107
 evidence for other access-related
outcomes.

Medical rehabilitation Medical rehabilitation plans an essential

in disaster response 614 role in response and disaster management
for improved access to rehabilitation
Global x
services for those affected, both in the
immediate emergency response and
during the post-disaster transition.
Distance Training Bangladesh Protibondhi Foundation
Packages (DTP) developed an outreach training service for
513,615,616 parents of children with cerebral palsy.
Special education teachers with additional
training in physiotherapy or speech and
language train parents using involved
Distance Training Packages (DTP), which Bangladesh x x
are used in the training and then taken
home to use with the child. Methods
include demonstration, teaching, and the
observation. Assessments show
improvements in motor skills
development.
Iraq Emergency The Iraq Emergency Disabilities Project
Disabilities Project 72 improved the delivery of community-
oriented rehabilitation and prosthetic
services, constructing and equipping six
basic rehabilitation centres and two
prosthetic workshops. The project was
Iraq x x
successful in providing more than 38,000
assistive devices to PWD, as well as
training prosthetics technicians and
hospital-based physiotherapists and
physicians.

A community-based Anganwadi workers (frontline health

model of early workers) utilise Developmental
identification and Observation Card for mothers and the
Trivandrum Developmental Screening
intervention of India x x
Chart to screen motor development
developmental delay
615,617
milestones, along with home-based
therapy.

Simplified Hearing Aid Community-based provision of hearing

Rehabilitation (SHARE) assessment and hearing aids through
618 trained community workers allowed for
Bangladesh x x x
comparable use of hearing aids, perceived
usefulness, difficulty of use, and perceived
improvement in life enjoyment.
Resources for In-home and telephone sessions aim to
Enhancing Alzheimer’s reduce caregiver burden and depression,
Caregiver Health improve self-care, and manage
(REACH II) intervention
behavioural issues with persons with HIC x x x
619 dementia. Ethnic minorities received less
intervention time, but this did not hold in
a multivariate model.
Second Life Second Life Intervention offers
psychoeducation in small groups using HIC x x
Intervention 620
108
 online virtual worlds proved to be feasible
and improved self-esteem while also
reducing depressive symptomatology.
Life Improvement for Life Improvement for Teens (LIFT) is an
Teens (LIFT) 577 online trauma focused intervention for
adolescents to complement school-based
mental health services. LIFT components
were drawn from evidence-based trauma
interventions for trauma that utilises a HIC x x x
cognitive-behavioural approach to
address symptoms of anxiety, depression,
and trauma. Evidence
shows that its users find it feasible and
acceptable, with moderate satisfaction.
Care for Stroke 621 Care for Stroke, a web-based,
smartphone-enabled educational
intervention for the management of
physical disabilities following a stroke India x x
improved persons’ knowledge on stroke;
rehabilitative exercises; functional skills;
daily living skills; and assistive devices.
MD2Me 622 A transition intervention for adolescents
with chronic disease, MD2Me, consists of
a two-month web- and text-based disease
management and skill-based component,
followed by a six-month review period,
supported by a text algorithm for disease HIC x x x
management and health care team
contact. MD2Me was effective in
increasing disease management, health-
related self-efficacy, and patient-initiated
communications.
Promoting Amputee A community-based, self-management
Life Skills self intervention for PWD after limb loss
consisting of nine groups sessions HIC x
management (PALS-
delivered by trained volunteer leaders.
SM) 623,624
Antidepressant Skills Supported self-management for
Workbook 625 depression where PWD are supported by
non-specialist providers to learn and
Vietnam x
implement mood management skills using
the workbook. Intervention proved
feasible.
Depression self- The self-management program includes
management for rural didactic presentations on components of
women with physical depression, group discussion, in-session
exercises to teach concepts, and weekly
disabilities 626 HIC x x x
homework assignments. When combined
with regular centre for independent living
services, it has an effect on management
of depressive symptoms.
Family Family-focused psychoeducation for PWD
psychoeducation with bipolar mood disorder consisting of
Iran x x
627 one session prior to discharge increased
frequency of psychiatric visits.

109
Mental health services Community mobilisation and sensitisation
post-conflict in with village health teams increasing
Uganda x x
Northern Uganda 628 demand for and utilisation of mental
health clinics.
Sexual Abuse Program to provide mental health services
Empowerment to persons with disabilities surviving
Programme at Cape sexual assault, alongside psycho-legal South
x x
services. Programme resulted in high Africa
Mental Health 231,262
conviction rate, but did not report on
mental health access.

Early hearing detection Early hearing detection and intervention

and intervention (EHDI) introduces universal newborn
South
(EHDI) 629 hearing screening for diagnosis of hearing x
impairment with an early intervention
Africa
services offered by 8 months
Intervention to Co-produced intervention includes a
Improve Uptake of booklet, with visual aids, introducing
Referral for Ear and access and hospital processes, delivered
Hearing Services for
by an ‘expert mother’, as well as a text Malawi x x
message reminder after referral to
Children 630
specialist services. The intervention is not
yet piloted.
Birth attendants Birth attendants were able to screen
screening for young children for development delays
developmental delays and implement habilitation services, Bangladesh x x x
615,631 including structured stimulation play
activities.
Vision through the For children with multiple disabilities,
Hands 632 ophthalmic outreach screening and Brasil x x
optometry services were provided.

Physical Health Physical health screening for persons with

Screening for PWD 234 mental illness increased knowledge of
existing conditions. Screening
programmes may be more successful with
the following components: staff and
HIC x
stakeholder involvement in screening;
using adapted equipment; linkage to
primary care; and pharmacist on co-
located.

Special Care Dentistry Oral care for PWD focuses on access to

351 the dental clinic, the dental chair, and to HIC x x
the mouth.
Women’s health clinic A women’s health clinic offers
for PWD 413 comprehensive gynaecological services for
women with spinal cord injuries and other HIC x
disability, increased frequency of breast
self-exam.
Polyanna Project Pictoral antenatal appointment sheets
Antenatal Resources 633 with easy read text and space for midwife
to add additional information are filled
HIC x x x
out with patients and midwife to improve
continuity of maternal care for patients
with learning disabilities.
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 Supports to Access STARS aims to improve the quality,
Rural Services (STARS) accessibility, and care coordination for
634,635 postnatal care for PWD and their families HIC x x
through weekly family service worker
home visits for a period of 12 months.
National Minimum The National Minimum Health Care
Health Care Package Package requires the government to train
572 health care workers in sign language, Uganda x x x x
which allows for better access to HIV/AIDS
services and primary care.
Peer education for A school-based, peer education
HIV/AIDS among deaf programme among dead PWD consisted
PWD 231,636 of peer-to-peer, group, and drama
Malawi x
facilitation based. The intervention
successfully increased HIV/AIDS awareness
and knowledge.
Aerobic exercise A school-based programme to increase
programme aerobic exercise for children with
Nigeria x
637 intellectual disability was successful in
maintaining preventive health behaviours.
Intervention to Co-produced intervention consisting of a
improve menstrual menstrual hygiene pack for person with
hygiene management intellectual impairment; menstrual
calendar for carer; and three training Nepal x
for people with
modules for both. The intervention not yet
intellectual
piloted.
impairments 630
Package of WHO is developing a Package of
Rehabilitation Rehabilitation Interventions (PRI), which is Global
Interventions (PRI) 638 forthcoming.
SSA: sub-Saharan Africa; HIC: High-Income Country; LMIC: Low- and Middle-Income Country

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