Obpp Final Version

Running head: CAREGIVER EDUCATION AND TRAINING PROGRAM
Caregiver Education and Training Program:

Returning Home Post-Stroke
Jackie Einerson
University of Utah
CAREGIVER EDUCATION AND TRAINING SERIES
Introduction
Stroke is the leading cause of long-term disability in the United States, with nearly
800,000 suffering a stroke annually. Seventy percent of stroke survivors return home and often
need assistance from friends or family, with one third of caregivers giving at least 21 hours per
week of care (American Heart Association [AHA], 2016b). The purpose of this project was to
determine the current presence and effectiveness of education and resources provided to
caregivers of stroke survivors at the Rehabilitation Center at the University of Utah (U of U)
Inpatient Hospital in Salt Lake City. Additionally, this project aimed to explore the changes in
roles, responsibilities, and occupational participation by caregivers of stroke survivors and how
this is potentially affecting their feelings of burden and quality of life (QOL). As a result of the
needs assessment and literature review presented below, an education and training program for
caregivers is proposed. It will be conducted by a PhD student in the Rehabilitation Science
program at the U of U, who also has a masters degree and is a licensed and registered
occupational therapist (OTR/L). This program will be located at the Rehabilitation Center and
will consist of one-on-one education with the OTR/L, a four-part education and training series,
an online support group, and other community resources. The program will last for two years,
with the first year acting as a pilot program, and the second year as a more defined and effective
intervention.
Description of the Setting
The setting for this program is at the Rehabilitation Center, located at U of U Inpatient
Hospital in Salt Lake City which is an urban environment in a strong medical setting. This center
is primarily funded through Medicaid/Medicare, patient insurances, and charity (University of
Utah Health Care, 2011). There are a variety of disciplines providing healthcare, including
physicians, physician assistants (PA), nurses, psychologists, social workers, occupational

therapists (OT), physical therapists (PT), speech-language pathologists (SLP), and others. They
provide inpatient services for all disciplines and outpatient services with physicians, nurses, and
rehabilitation psychologists. They have a variety of specialty programs and services to support
the wide variety of diagnoses they see, including amputation, brain injury, cancer, spinal cord
injury, stroke, sports injuries (including concussions), and chronic pain . Some examples of their
specialty programs and support services include spasticity management, sports concussions
clinic, telehealth, pain management clinic, and Therapeutic Recreation and Independent
Lifestyles (University of Utah Health Care, 2016a). They also have a specialized stroke program
which focuses on walking, balance, coordination, vision, speech, cognition, and swallowing
(University of Utah Health Care, 2016b). On average for 2014, the Rehabilitation Center treated
727 total patients, and 204 stroke patients. Seventy three percent of the total 727 were discharged
directly home and 94.8% were living at home 90 days after discharge. Patients receive an
average of 3.6 hours of therapy per day and report a 91% satisfaction rating. It is reported that
patients have on average 10% more complicated diagnoses than other rehabilitation centers
around the county (University of Utah Health Care, 2016c).
As identified by this center, their focus is to preserve, enhance, and restore the quality of
life for people with disabling conditions (University of Utah Health Care, 2016a). Through their
stroke program, they strive to create personalized treatment plans for stroke patients in an effort
to help them identify physical, mental, and emotional rehabilitation goals. They believe that this
enables the patient to return to the community at their highest level of physical, social, and
emotional well-being (University of Utah Health Care, 2016b). The Rehabilitation Center offers
inpatient and outpatient services (therapy outpatient services at a different location), which
provide neurological education and resources to help prepare the stroke survivor and family to
return home. This center also reports strong involvement in research, which they believe puts
them at the forefront of effective and quality care (University of Utah Health Care, 2016b).
Regarding plans for the future, current OTR/Ls identify two main topics they would like
to emphasize in caregiver education: (1) reassuring the caregiver that it is acceptable and
encouraged to ask for help (and doesnt mean they are failing as a caregiver) (2) providing more
guidance in appropriate community resources that caregivers can access after their loved one
returns home.
Data Collection
For the data collection, I interviewed healthcare providers and caregivers of stroke
survivors. I interviewed six healthcare providers from various disciplines working in different
settings to gather a well-rounded view of the needs in our community. These healthcare providers
included a rehabilitation psychologist and OTR/L at the Rehabilitation Center, an OTR/L at the
Sugar House Health Center, a PT that helps runs the Wellness Center and is a professor for the
DPT program, and two OTR/Ls who have worked in a variety of settings and are professors in
the MOT program. I have interviewed five caregivers ranging from approximately 35-65 years
old. The stroke survivors they care for had their stroke anywhere from 2-20 years ago and have
physical, emotional, and/or cognitive sequelae.
I conducted these interviews in person, on the phone, and via email (see Appendix A for
interview questions). I did not use any formal assessments or observation; I solely based this data
collection on interviews.
Regarding the types of education and resources that should be provided, these three main
topics were recommended from both healthcare providers and caregivers. It was recommended
they be presented via an electronic booklet (possibly some paper versions for those who do not
have access to a computer), in person education sessions offered at varying times throughout the
week (with remote access for caregivers who cannot attend), educational videos, and an online
support group. These are some specific suggestions regarding the three topics:
basics of stroke: what is stroke, prevalence/statistics, types of strokes, potential

symptoms, long term effects
how to take care of oneself as the caregiver: why this is important, ask for
help/support when needed, current resources available in the community (e.g.,
support groups, home services, recreation activities, community organizations), selfcare (e.g., coping with stress, physical exercise, diet, resiliency), organization (e.g.,
financial planning, calendars, schedules, Carezone app), social support
(friends/family), community reintegration
how stroke survivor-caregiver relationship may change post stroke: role changes (e.g.,
return to work, caring for children, homemaker), spouse vs. therapist role,
communication, reading/expressing emotions, supporting the stroke survivor (esp.
encouraging independence), redefining the relationship, managing the difficult to
manage
Staff
From these interviews, first learned that currently, a nurse educator is responsible for the
majority of formal education and is able to tailor this to the families specific needs, while
therapists provide additional education as needed. Regarding what education needs to be
improved, I received varying information from healthcare providers. Healthcare providers

disagreed slightly on whether caregiver education should occur during the inpatient stay or once
the stroke survivor has been discharged to other services. An OTR/L currently working at the
Rehabilitation Center provided the following statement:
It's important to think about how much education families can handle at one time. I have
found that often families have a saturation point where so much is happening so quickly
that they can only process so much information at a time. This leads me to think that an
education course would be more useful in the outpatient setting. The course could cover
issues such as community resources, caregiver burnout, future stroke prevention, etc. In
my opinion, this might be a more valuable time to have additional resources because it's
when they're home and dealing with issues on their own without help from health
personnel.
In contrast, the PT and rehabilitation psychologist supported the idea of caregiver
education while the stroke survivor was still at inpatient, in an effort to provide more formal
support to the caregiver and better prepare them for the transition home. They described how
many caregivers are unable to attend appointments during the day, so are missing out on the
education provided by the nurse educator and/or therapists (caregivers also expressed this during
interviews), and the stroke survivor isnt always able to fill in the information (especially if they
have aphasia).
Caregivers
Regarding the caregiver interviews, four out of five caregivers wished they had received
more education while their loved one was at inpatient. They felt unprepared to return home with
minimal knowledge of community resources to reach out to when they needed additional help.
The fifth caregiver felt like her education was comprehensive, but also wished she had more
knowledge of available community resources. Four caregivers described their feelings of
overwhelm, and two indicated their desire that someone had educated them on how to find their
limit. They had instead become overburdened once their loved one returned home, leading to
financial, health, and relationship difficulties. Four out of five felt education and support earlier
in the process could have tremendously helped in their transition to return home and in the care
of their loved one.
As a result of this feedback from both healthcare providers and caregivers, I believe the
Rehabilitation Center as an education site would be the most effective. Considering the
conflicting responses identified above, I feel this site would provide a good balance since it has
both inpatient and outpatient services (therapy outpatient services at a different location), leading
to a high chance that the stroke survivor and caregiver would return to the center even after
discharge (especially for physician visits). This would allow caregivers to access these education
sessions at any time throughout their loved ones recovery if additional questions arise or they
feel they need more support. This variety of options would also resolve some identified concerns:
caregivers cannot attend nurse educator sessions due to work, caregivers are too saturated to
receive this information at inpatient, and caregivers will not be aware of education sessions at
another location (e.g., if the stroke survivor is not receiving outpatient services).
During my level I fieldwork and through discussions with caregivers in Dr. Terrills
research, I have heard very similar experiences to those identified above. Many caregivers feel
overwhelmed without the support and resources they need. I hope that this education series could
be a beneficial program for them, and improve the entire families health, relationships, QOL,
and continued occupational participation.
Literature Review
This literature review will explore common challenges that new caregivers of stroke
survivors experience and summarize current and proposed interventions that are supported by
research. This evidence will be then tied to the needs assessment interviews that were recently
conducted. This will lead to a proposed caregiver education and training program to be located at
the Rehabilitation Center at the U of U Inpatient Hospital in Salt Lake City.
Effects on the Caregiver
Research suggests caregivers can be negatively affected their new roles and
responsibilities. As indicated by Jaracz et al. (2015), A significant proportion of the caregivers
experienced considerable burden in the post-acute and chronic phases of stroke, (p. 1011).
Research also suggests burden can lead to lower quality of life (QOL) of the caregiver.
Unemployment and longer hospitalization of the stroke survivor and poor health and low socioeconomic status of the caregiver can all contribute to this increase in burden (Jeong, Myong, &
Koo, 2015; Chuluunbaatar, Chou, & Pu, 2016). Epstein-Lubow, Beevers, Bishop, and Miller
(2009) indicate 41% of caregivers report depression after someone in their family has had a
stroke. Additionally, if either the caregiver or stroke survivor experiences depression, then there
is a possibility of depression in the other (Grant et al., 2013).
Decreased participation in occupations can also affect burden, QOL, and depression.
Research indicates caregivers experience changes in occupation, including changes in work
status, after their significant other returns home (AHA, 2014). Female caregivers report
occupational loss in valued activities leading to high levels of burden and decreased mental
health (Kniepmann, 2012). Additionally, role changes due to the stroke survivors decreased
ability to participate in occupations can lead to increased stress and a decline in caregiver
independence and free time (Cao et al., 2010). This research supports the notion that post-stroke,
caregivers can experience increased burden in addition to decreased mood, QOL, and
occupational participation.
Importance of the Caregiver
Ong and Koh (2016) recognize how important the caregiver is in the stroke survivors
recovery and how social and family support can positively (and unfortunately, also negatively)
affect stroke survivor outcomes. Similarly, Koh et al. (2012) reports decreased caregiver
availability can negatively affect rehabilitation effectiveness and long-term rehabilitation
efficiency. Another study suggests caregiver involvement is a determinant in helping the stroke
survivor improve upper extremity function. It is suggested further research is needed to help
determine the most effective way that caregivers can be involved in the stroke survivors
rehabilitation (Harris, Eng, Miller, & Dawson, 2012). Finally, Godwin, Swank, Vaeth, and
Ostwald (2013) indicate when the caregiver of a stroke survivor is a spouse, if they are mutually
strong, they are better able to cope with the challenges of the stroke.
These findings support the importance of the caregiver in the stroke survivors long-term
recovery. Therefore, assessments exploring caregiver preparedness and interventions targeting
education (including psychoeducation), problem-solving, social support, changes in roles,
routines, and occupations are necessary for the caregiver in order to improve the rehabilitation of
the stroke survivor.
Assessing Caregiver Preparedness
Young, Lutz, Creasy, Cox, and Martz (2014) recommend using assessments to analyze
caregiver preparedness prior to discharge in order to identify areas of concern, address unmet
needs, and guide discharge planning. Through informal interviews with caregivers and stroke
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survivors, three categories from 12 domains were identified in this study: caregiver commitment,
caregiver capacity, and overall impact of stroke. An involvement of this assessment in the
proposed caregiver follow-up program would could help create a more client-centered, focused,
and effective plan for caregivers post-stroke.
Caregiver Interventions
General education. Danzl et al. (2015) reports that the quality and amount of education
provided to stroke survivors and their caregivers is severely lacking at the acute/inpatient stage.
More specifically, Cobley et al. (2012) indicates stroke survivors and caregivers reported this
lack education includes cause of stroke, prognosis, secondary prevention, and support. The
authors also suggest caregivers feel isolated, neglected, and excluded from the decision and
discharge planning process (p. 755). A study conducted by Stone (2013) supports the idea of
using the internet to help improve education and better prepare caregivers for the return home.
With shorter hospital stays, it could be an effective complement to other services.
During my needs assessment interviews, almost all caregivers expressed a desire for
more education during inpatient stays and increased knowledge of community resources for
when they returned home. They felt they didnt have adequate support and were unprepared for
the sudden change in lifestyle. An OTR/L who works at the Rehabilitation Center indicated many
of their staff have only ever worked in an inpatient setting. As a result, she feels they have
insufficient knowledge of what the caregivers experiences are really like after the stroke
survivor returns home, and believes they arent able to adequately prepare caregivers prior to
discharge. The proposed caregiver program could help combat this by working with these
OTR/Ls to improve caregiver preparedness and provide the education these caregivers desire
before they take on full responsibilities at home.
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Psychoeducation and problem-solving training. Jaracz, Grabowska-Fudala, and

Kozubski (2012) suggest professional interventions should address the caregivers ability to cope
with stress, which will likely improve their ability to care for and reduce the physical dependence
of the stroke survivors. Another study recommends to support caregivers across the stroke
trajectory, the core skills of problem-solving, and stress coping should be included in the
psychosocial interventions (Cheng, Chair, & Chau, 2014, p. 30). This study also indicated this
psychoeducation can increase the caregivers psychosocial wellbeing and reduce healthcare
resources needed by stroke survivors. Lui, Lee, Greenwood, and Ross (2012) suggest teaching
caregivers problem-solving skills may help improve their psychosocial and physical well-being,
which could positively influence their ability to care for the stroke survivor. As a specific
intervention, Otswald et al. (2014) reports mailing psychoeducational material to strokecaregiving dyads led to decreased depression and stress, suggesting this may be a feasible and
beneficial way to provide continued education after discharge.
During my needs assessment interviews, both caregivers and healthcare professionals
indicated the challenges of being able to manage emotions post-stroke. With all their new
responsibilities, increased emotional support for caregivers was deemed necessary. After
returning home, many caregivers reported feeling overburdened and exhausted, but didnt know
where to turn for help. They identified how they wished someone had taught them their limit in
order to help maintain a positive well-being and QOL. Health professionals suggest these
caregivers need specific training in problem-solving skills to help create long-term autonomy,
especially after services end. These skills could help them tremendously in their ability to care
for both themselves and their loved ones throughout the recovery process. These interview
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responses, in addition to the research presented above, support the need for psychoeducation and
problem-solving training to help support caregivers in their new roles.
Changes in roles, routines, and occupations. Gustafsson and Bootle (2013) report
stroke survivors and caregivers wish they had been able to create personalized routines while at
inpatient to better prepare for the return home. They also suggested the lack of opportunities to
engage in desired occupations and routines while still at the hospital may have prevented
recovery and adaptation. Caregivers reported difficulty in navigating their changing roles. They
were uncertain how to find a balance in roles of spouse and caregiver vs. motivator and therapist.
Gustafsson and Bootle (2013) indicate the results suggest that there is a need for stroke
rehabilitation services to better prepare the clients and carers for transition to home (p. 1380).
During my interviews, all caregivers indicated how difficult the changes in roles,
routines, and occupations were. One couple had a complete switch in roles, with the husband
becoming a stay-at-home dad and the wife returning to work. They indicated their desire that
someone would have better prepared them for this significant change, especially since they had
five children to care for. Additionally, many caregivers I interviewed reported increased burden
of household tasks since their spouse was unable to contribute as much as they used to. This
resulted in the caregiver experiencing decreased occupational engagement of desired activities,
such as leisure and social participation. Two OTR/Ls at the Rehabilitation Center said they wish
they were better able to prepare the caregivers for these changes, but due to time constraints and
lack of knowledge of what life is like after discharge, they dont feel they are adequately
preparing them. The research presented above and these interview responses support how
important it is to address changes in roles, routines, and occupations for caregivers.
Individualized plans that are client-centered are necessary in order to meet the needs for each
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unique situation of caregiver and stroke survivor. These gaps are addressed in the proposed
caregiver program.
Importance of social support. Adriaansen, van Leeuwen, Visser-Meily, van den Bos,
and Post (2011) suggest social support for spousal caregivers can improve life satisfaction,
regardless of the severity of caregiver strain. Increased caregiver support can also improve
community reintegration, desired occupational participation, psychological well-being, and
decreased emotional distress (Cameron & Gignac, 2008). Additionally, Chuluunbaatar, Chou,
and Pu (2016) suggest providing caregivers with social and financial support may be helpful to
improve QOL of caregivers.
In my interviews, all caregivers identified that increased social support would have been
extremely beneficial for them. Additionally, a list of resources in the community was requested,
to help them access further support and opportunities for community re-integration (e.g.,
Wasatch Adaptive Sports). This all speaks to the need for increased opportunities for social
support once the caregiver and stroke survivor return home.
Finding the right time. A significant challenge in navigating caregiver education poststroke is finding the right time to implement these interventions. Cameron and Gignac (2008)
recommend emotional care, education, and training need to be addressed early in the recovery
process. Danzl et al. (2016) reports the following findings:
Our results suggest the need for improved access to educational sources into the
community-based chronic phase of stroke, proactive identication of informational needs
by providers, greater inclusion of caregivers in education, enhanced communication when
providing information, and a multimodal approach involving multiple sources, delivery
methods, and time points. Transitioning the process of patient and caregiver education
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from a hidden curriculum to an intentional and purposeful intervention is perhaps the key
to improving educational satisfaction and outcomes. (p. 22)
Program Proposal
The information gathered during the needs assessment interviews and literature review
support the implementation of a program focused on caregiver education and training poststroke. Focus will be placed on basic stroke education, self-care, role changes, how to be an
effective caregiver, and resources available in the community. Additionally, caregivers will be
trained in problem-solving and goal-setting techniques to help support these life changes.
Research suggests these can all improve QOL and well-being of the caregiver, which in turn can
have a positive influence on the rehabilitation of the stroke survivor.
Program Overview
The caregiver education and training program will consist of three main steps (see Figure
1 in the Appendix B). First, while the stroke survivor is still at the Rehabilitation Center at the U
of U Inpatient Hospital, the caregiver will be interviewed for their level of preparedness using
the research article by Young, Lutz, Creasy, Cox, and Martz (2014) as a guide. The information
gathered from this interview will help the OTR/L identify areas of concern prior to the caregiver
taking on their new role, including caregiver commitment, caregiver capacity, and overall impact
of stroke, allowing the OTR/L to create a more specialized and effective plan for the caregiver.
The OTR/L will also administer the Canadian Occupational Performance Measure (COPM) to
the caregiver. Research supports caregivers are at risk for occupational loss, increased burden,
and decreased mental health (Kniepmann, 2012). The COPM can help guide the caregiver in
defining meaningful goals and aid the OTR/L in better preparing them for the return home.
Following this 30-minute portion, the OTR/L will provide 60 minutes of education to the
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caregiver, and stroke survivor if available. This 60 minutes can occur at one time, or be broken
up into smaller increments, depending on the needs and time available. Since the caregiver and
stroke survivor will receive some basic education from the physician and nurse educator, the
education provided by the OTR/L will be more focused on occupations and psychosocial factors,
including: community reintegration, the importance of social support, psychoeducation, problemsolving skills, and changes in roles, routines, and occupations. If it is clear the caregiver or stroke
survivor needs additional psychosocial support, then a neuropsychologist will be recommended.
After the stroke survivor is discharged and returns home, the caregiver will then be
informed of four resources that are available to them: (1) four-part education and training series,
(2) list of community resources (e.g., support groups, Aging Services, Wasatch Adaptive Sports),
(3) online resources at the National Stroke Association and American Heart Association websites
(e.g., online support groups, educational videos, information about strokes), and (4) two phone
apps to help guide the recovery process and prevent future strokes (ComeBackStrong and
FoodSmarts).
The four-part education and training series will be offered in person at the Rehabilitation
Center; two education series will be offered per month, with two session per week (caregivers
will only attend one session per week; (see sample schedule in Figure 1 of Appendix B). Each
session will be a 90 minutes, with the first 30 minutes being lecture style of basic education, and
the last 60 minutes being interactive problem-solving and goal-setting (see Appendix C for
example of worksheets used to guide sessions). The focus of the problem-solving and goalsetting will be to help the caregiver identify how to implement this education and training into
their particular situation. They will work together with other caregivers to come up with
solutions, with the guidance of the OTR/L leading the session. To support caregivers who are
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unable to attend due to barriers related to caregiving or transportation, the option to remotely
attend will be available, such as through Google Hangout or via the phone. The last session will
have a different format, and they will choose a fun activity of their preference, such as going out
to a restaurant or having a game night. This type of social support for caregivers is supported by
research to improve community reintegration, occupational participation, and psychological
well-being (Cameron & Gignac, 2008). Caregivers at any stage along the recovery process will
be allowed to attend this education and training series, regardless of how long ago the stroke
was.
Goals and Objectives
Goals and objectives of the proposed program are listed in Appendix E. They are listed
with the expected outcomes (see Expected Outcomes below for further explanation).
Alignment with Rehabilitation Center Mission
This program aligns well with the mission of the Rehabilitation Center. As identified by
this center, their focus is to preserve, enhance, and restore the QOL for people with disabling
conditions (University of Utah Health Care, 2016a). The caregiver is considered a patient in this
program, and a main objective is to maintain and improve their QOL, thereby hopefully also
benefitting the stroke survivor. Additionally, the Rehabilitation Center strives to create
personalized treatment plans targeting physical, mental, and emotional rehabilitation goals. They
believe that this enables the patient to return to the community at their highest level of physical,
social, and emotional well-being (University of Utah Health Care, 2016b). This program also
targets these areas in an effort to help the caregiver and the stroke survivor have a successful
return home and improve community reintegration. Finally, the Rehabilitation Center reports
strong involvement in research, which they believe puts them at the forefront of effective and
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quality care (University of Utah Health Care, 2016b). The development of this program is
supported and guided by strong research and will continue to evolve as new research is
developed.
Practice Models
The following models were used to guide the development of the proposed program. The
first two models were foundational in developing the underlying ideas of the program as a whole,
while the third model was implemented as a specific intervention.
Person-Environment-Occupation (PEO) model. This model focuses on creating
congruency between person, occupation, and environment (Law et al., 1996). This will be very
important for the caregivers and stroke survivors in their new life situation. First, educating them
about the effects of stroke and ways to improve these will increase occupational participation.
Additionally, focusing on positive self-care for caregivers will be important to maintain their
QOL and increase their capability for caregiving of the stroke survivor. Second, adjusting the
environment (e.g., reducing clutter and increasing lighting) could help increase independence
and safety of the stroke survivor during occupational performance. Ensuring caregivers are
connected to their community and potential community resources will help them maintain
positive QOL. Third, adapting occupations will be helpful to increase the stroke survivors
independence and safety, such as new dressing techniques and adaptive equipment for the
bathroom. It will also be important to adapt leisure and social activities so the caregiver can
participate within the new restraints of their caregiver role. For example, utilizing Wasatch
Adaptive Sports so both the stroke survivor and caregiver can participate and bike together.
Kawa model. The underlying idea of the Kawa framework is harmony (life energy or
life flow), with a focus on the contexts that shape and inuence daily lives. A positive state of
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harmony between the subject and their environment allows them to participate in desired daily
occupations, while a state of disharmony prevents participation. Regarding caregivers, the
river represents their new situation. Rather than trying to take control, they are encouraged to
find harmony through coexistence and cooperation (Iwama, Thomson, & Macdonald, 2009).
While still at the Rehabilitation Center, caregivers will conceptualize the new roles and
challenges they will likely face as a caregiver and learn how they can create positive harmony
(e.g., healthy routines). After the stroke survivor returns home and caregivers are faced with new
and unexpected challenges, they will again use this model to guide the return to a harmonious
environment.
Cognitive Orientation to daily Occupational Performance (CO-OP) model. The goal
of this model is to help individuals learn how to set and follow through with goals. This is done
through four steps: Goal-Plan-Do-Check (Polatajko & Mandich, 2004). This will be important
for caregivers as they will undoubtedly be faced with new situations and challenges in their
recently acquired roles of caregivers, and this model will help guide them in problem-solving
and goal-setting to work through these more effectively. Additionally, research suggests the COOP model is more effective than standard occupational therapy treatment in improving
performance in self-selected goals by stroke survivors (Polatajko, McEwen, Ryan, & Baum,
2012). Since the caregiver will be learning this model, they could also help guide the stroke
survivor, hopefully improving the stroke survivors recovery.
Occupational Justice
Occupational justice is an important component of holistic occupational therapy services,
as identified in Townsend and Wilcock (2004). The different types of occupational justice that
will be targeted in this program are described in the sections below.
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Occupational marginalization. Teaching caregivers and stroke survivors that they have
the right to make everyday decisions in mainstream life can increase participation in occupations.
For example, advocating for accessibility options at an employment site.
Occupational imbalance and apartheid. Teaching caregivers and stroke survivors that
they have right to fair privileges can increase participation in all occupations. For example, by
helping both the caregiver and stroke survivor return to work, homemaking, volunteering, or
other occupations that give them meaning and empowerment, this is preventing a status of unoccupied and under-occupied (p. 82). These, unfortunately, can lead to occupational
imbalance, poor health, and decreased mood, such as depression.
Occupational deprivation. Teaching caregivers and stroke survivors how to participate
in occupations when they seem out of their control can increase self-advocacy and occupational
engagement. For example, advocating for accessibility at buildings or training them how to use
public transportation to reduce geographic isolation.
Occupational alienation. Teaching caregivers and stroke survivors the importance of
participating in occupations they find meaningful and providing them with community resources
increases occupational balance. For example, connecting them to Wasatch Adaptive Sports to
enable recreation and exercise. Often, stroke survivors are home bound and they only know
about the way they used to do things (e.g., riding a bike down the street) and are not aware of
additional resources. These opportunities also enable the caregiver to participate in meaningful
leisure activities and find access to social support.
Program Details
Program Eligibility
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In order to be eligible for this program, clients must be caregivers of stroke survivors who
are patients at the Rehabilitation Center at the U of U Inpatient Hospital. It is desired that both
the caregiver and stroke survivor attend the one-on-one education with the OTR/L; however, if
the stroke survivor is unable (e.g., due to cognitive effects of the stroke), the caregiver can attend
alone. The caregiver must also be willing to attend (remotely or in person) the four-week
education and training series during the following month.
For this pilot program, caregivers cannot participate if their loved one is not a patient at
the Rehabilitation Center. However, future plans of the program hope to allow all interested
caregivers to attend the four-part education and training series, regardless of where the stroke
survivor was initially treated.
Types of Prevention and Services
This program will be targeting secondary prevention by educating the caregiver prior to
the stroke survivors discharge from the hospital. This will hopefully lead to reduced chance of
negative caregiving experiences, such as problems within the relationship and decreased mood.
Additionally, it will hopefully help the caregiver improve the safety and recovery of the stroke
survivor, such as a decreased chance in falls. This secondary prevention would primarily occur
during the four-part education and training series. Tertiary prevention will also be targeted after
the stroke survivor returns home and the caregiver is faced with new challenges. Primary
prevention will not be addressed during this program.
Direct services will be implemented for the caregiver by the OTR/L throughout the entire
program via various methods, such as education, training, and social support. Direct services will
only be provided to the stroke survivor during the one-on-one education with the OTR/L at the
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Rehabilitation Center. The information gathered from this session can be passed along to the
stroke survivors therapists.
Role of Occupational Therapy
It is proposed that an OTR/L is the primary educator for this post-stroke caregiver
program. OTR/Ls are skilled in interviewing (e.g., caregiver preparedness), administering
assessments (e.g., COPM), working one-on-one with clients, and leading group sessions, as
would be necessary to successfully run this program. They also have specialized knowledge in
the topics covered, especially regarding stroke, such as how to identify and adapt to changes in
roles, routines, and occupations. OTRs could effectively teach caregivers basic education, while
also training them to use the CO-OP model to increase independence, self-efficacy, and longterm success. Plans for each caregiver would be individualized depending on their particular
situation.
A sample schedule is provided in Table 1 of Appendix D. It is expected that the OTR will
take screening calls from potential participants, prepare for sessions (including printing supplies,
getting laptop set up for remote attendance, and setting up room), complete the one-one-one
education and four-part series sessions, monitor online support groups, allow a fieldwork student
to shadow if there is interest, complete all data compilation (will include tracking caregiver
progress and determining if program met proposed goals/objective), and present findings at the
end of the year to staff at the Rehabilitation Center and the PhD students mentor.
Rehabilitation Center Staff involvement
Occupational therapists currently working at the Rehabilitation Center will refer
caregivers to the program, and this will be their only involvement with the program. During the
first month of the program, the OTR/L running the program will do a short presentation of the
22
program during a staff meeting (with the approval of the rehabilitation director) and provide
written materials. The OTR/L staff at the hospital will help recruit four caregivers per week by
providing potential participants with an overview of the program, written materials, and contact
information to call the program OTR/L for final eligibility. The program OTR/L will make the
final decision and schedule a time to meet with them for the one-on-one education portion if the
caregiver is eligible and willing to complete the program.
Program Start-up
For the start-up of the program, it would be considered ideal for the program OTR/L to
have twenty hours during the first two weeks of January for preparation. This will give the
OTR/L time to train staff at the Rehabilitation Center, print materials, gather necessary
assessments, purchase supplies (colored pencils, pens, pencil sharpener), set up the online
support group, purchase a laptop, and make sure a conference room will be available for the
four-part series. It would be considered adequate if materials and assessments were available and
ready for the first two months.
Time and Space Requirements
Time requirements for the program OTR/L is outlined in the schedule in Table 1 of
Appendix D. It is expected they will complete 681 hours total during the first year. It is expected
caregivers will complete 30 minutes of caregiver preparedness interviewing and the COPM, 60
minutes of one-on-one education, and six hours (90 minutes per week) for the four-part
education and training series.
This program will require a small space for the one-on-one education (can occur in the
patients room). Additionally a larger space will be needed for the four-part series that
accommodates 10 people (eight participants, program OTR/L, and one fieldwork student in
23
training if there is interest). A conference room at the Rehabilitation Center with chairs, a table,
and a place to set up a laptop for those remotely attending will be used. Regarding storage space,
a box and folder will be needed to store assessments, worksheets, handouts, and all other
supplies (colored pencils, pens, and pencil sharpener).
Community Resources
Week four of the four-part education and training series will be a free day where the
caregivers can choose what activity theyd like to do. This could be located at the Rehabilitation
Center (e.g., board games, potluck) or in the community (e.g., going out to dinner, volunteer
activity). The ability for caregivers to pay for an outing will likely vary, so some funding will be
factored into the budget for this session ($25 each session). For those attending remotely, the
OTR/L will assist in helping them find someone to watch their loved one if needed (e.g., Aging
Services). During the four-part training series, a section will be focused on community resources.
This will include goal setting to help caregivers access these resources and a list they can take
home for future reference.
Funding and Budget
Funding Options
It is proposed that a PhD student in the Rehabilitation Science program at the University
of Utah who is also an OTR/L will submit this program proposal to two grants at the AHA:
Clinical Health Profession Student Training Program (AHA, 2016a) and Predoctoral Fellowship
(AHA, 2016c). To find these resources, the following search terms were used in a google internet
search: American Heart Association community program grant stroke. These grants would
support funding for two years for the PhD student to complete the program, including training,
enrolling participants, running the program, compiling data, writing a report, presenting the
24
findings, and attending a conference. In order to apply, the PhD student would need to have
completed the initial coursework of the PhD program, so they would being implementing the
program in their second or third year of the PhD program.
The objective of the Clinical Health Profession Student Training Program is to enhance
the integrated research and clinical training of promising students who are matriculated in a
clinical health professional degree training program and who intend careers as physicianscientists or other clinician-scientists (AHA, 2016a). The objective of the Predoctoral
Fellowship grant is to provide predoctoral students with individualized, mentored research
training to initiate careers in cardiovascular and stroke research (AHA, 2016c). This program
proposal supports both of these objectives.
Budget Summary
As identified above, an OTR/L that is a PhD student in the Rehabilitation Science
program at the University of Utah will implement this program. Both proposed grants provide
funding for two years: $23,844 per year for a salary, $1,000 per year for health insurance, and
$2,000 per year for supplies (including $650 towards a conference, including travel). The
proposed hours for the PhD student will be based on a $35 hourly wage. During the first year, the
OTR/L will aim to enroll 16 participants per month (four per week) in the caregiver education
and training program. The OTR/L will first interview the caregiver for level of preparedness,
administer the COPM, and provide the one-on-one education while the stroke survivor is still at
inpatient (90 minutes per caregiver). Then the OTR/L will lead two four-part series per month
(Mondays and Wednesdays). The enrolled caregivers will start the four-part series the month
following their one-on-one education. A sample schedule is provided in Table 1 of Appendix D.
Supplies will be used for both one-on-one education and the four-part series, and in kind
25
contributions will allow for free use of a room, chair, and table. See Table 2 of Appendix D for
detailed outline of the proposed budget for the first year. During the second year, a similar
budget would be used, but the findings from the first year would be used to make changes to the
program as needed, such as timeline, intervention approach, etc.
Program Outcomes and Evaluation
Expected Outcomes
The expected outcomes of this program are to decrease burden, stress, and depression,
and increase occupational participation, community reintegration, and overall quality of life for
caregivers of stroke survivors. Additionally, it is hoped that this will lead to an improved longterm recovery for stroke survivors. Regarding the program, it is expected 176 caregivers will be
enrolled during the first year. After the first year, the program OTR/L and PhD mentor can make
adjustments to the program using feedback from caregivers and staff at the Rehabilitation Center
and re-implement the program during the second year. At the completion of the two years, it is
expected this program will broaden to other hospitals, outpatient clinics, and home health
agencies, with use by various healthcare professionals, such as physical therapists, speech
therapists, and social workers.
Program Evaluation
The outcomes of this program will be evaluated through four methods: qualitative and
quantitative questionnaires given to caregivers, percentage of met goals and objectives, inpatient
OTR/L staff responses at the Rehabilitation Center, and program evaluation questions. These will
be completed at the end of year one and two. See Appendix E for examples of program
evaluation materials and worksheets.
Agency Reaction to Proposed Program
26
Share your program idea with staff. Report on how you did this and what their reactions
were. This can be done via telephone as needed.
Conclusion
The needs assessment interviews and literature support the integration of a post-stroke
caregiver education and training program at the Rehabilitation Center at the U of U Inpatient
Hospital with the focus of helping caregivers adapt to their new responsibilities. Guided by the
PEO, Kawa, and CO-OP Models, this program could help improve the caregivers QOL by
reducing occupational loss, adapting occupations and environments, maintaining harmony, and
learning effective problem-solving and goal-setting skills. This will hopefully in turn help
improve the long-term rehabilitation of the stroke survivor. With the high prevalence of strokes
and resultant need for caregivers in the US today, the addition of this proposed program could
have a significant impact on our community as a whole. It is a necessary step to adequately
support caregivers who have recently been handed this difficult new role in life.
*AHA, OTR/L, order of 2 in text
27
References
Adriaansen, J. J., van Leeuwen, C. M., Visser-Meily, J. M., van den Bos, G. A., & Post, M. W.
(2011). Course of social support and relationships between social support and life
satisfaction in spouses of patients with stroke in the chronic phase. Patient Education and
Counseling, 85(2), e48-e52.
American Heart Association. (2014). Stroke survivors and caregivers explain the long road to
recovery. Retrieved from http://news.heart.org/stroke-survivors-and-caregivers-explainthe-long-road-to-recovery/
American Heart Association. (2016a). Clinical Health Profession Student Training Program.
Retrieved from
http://professional.heart.org/professional/ResearchPrograms/ApplicationInformation/UC
M_489785_Clinical-Health-Profession-Student-Training-Program.jsp
American Heart Association. (2016b). Impact of stroke (stroke statistics). Retrieved from
http://www.strokeassociation.org/STROKEORG/AboutStroke/Impact-of-Stroke-Strokestatistics_UCM_310728_Article.jsp
American Heart Association. (2016c). Predoctoral Fellowship. Retrieved from
http://professional.heart.org/professional/ResearchPrograms/ApplicationInformation/UC
M_443316_Predoctoral-Fellowship.jsp
Cameron, J. I., & Gignac, M. A. (2008). Timing It Right: A conceptual framework for
addressing the support needs of family caregivers to stroke survivors from the hospital to
the home. Patient Education and Counseling, 70(3), 305-314.
Cao, V., Chung, C., Ferreira, A., Nelken, J., Brooks, D., & Cott, C. (2010). Changes in activities
of wives caring for their husbands following stroke. Physiotherapy Canada, 62(1), 35-43.
28
Cheng, H. Y., Chair, S. Y., & Chau, J. P. C. (2014). The effectiveness of psychosocial
interventions for stroke family caregivers and stroke survivors: A systematic review and
meta-analysis. Patient Education and Counseling, 95(1), 30-44.
Chuluunbaatar, E., Chou, Y. J., & Pu, C. (2016). Quality of life of stroke survivors and their
informal caregivers: A prospective study. Disability and Health Journal, 9(2), 306-312.
Cobley, C. S., Fisher, R. J., Chouliara, N., Kerr, M., & Walker, M. F. (2013). A qualitative study
exploring patients and carers experiences of Early Supported Discharge services after
stroke. Clinical Rehabilitation, 27(8), 750-757.
Danzl, M. M., Harrison, A., Hunter, E. G., Kuperstein, J., Sylvia, V., Maddy, K., & Campbell, S.
(2016). A lot of things passed me by: Rural stroke survivors and caregivers
experience of receiving education from health care providers. Journal of Rural Health,
32(1), 13-24.
Epstein-Lubow, G. P., Beevers, C. G., Bishop, D. S., & Miller, I. W. (2009). Family functioning
is associated with depressive symptoms in caregivers of acute stroke survivors. Archives
of Physical Medicine and Rehabilitation, 90(6), 947-955.
Eriksson, G., Baum, M. C., Wolf, T. J., & Connor, L. T. (2013). Perceived participation after
stroke: The influence of activity retention, reintegration, and perceived recovery.
American Journal of Occupational Therapy, 67(6), e131-e138.
Godwin, K. M., Swank, P. R., Vaeth, P., & Ostwald, S. K. (2013). The longitudinal and dyadic
effects of mutuality on perceived stress for stroke survivors and their spousal caregivers.
Aging & Mental Health, 17(4), 423-431.
29
Grant, J. S., Clay, O. J., Keltner, N. L., Haley, W. E., Wadley, V. G., Perkins, M. M., & Roth, D.
L. (2013). Does caregiver well-being predict stroke survivor depressive symptoms? A
mediation analysis. Topics in Stroke Rehabilitation, 20(1), 44-51.
Gustafsson, L., & Bootle, K. (2013). Client and carer experience of transition home from
inpatient stroke rehabilitation. Disability and Rehabilitation, 35(16), 1380-1386.
Harris, J. E., Eng, J. J., Miller, W. C., & Dawson, A. S. (2010). The role of caregiver involvement
in upper-limb treatment in individuals with subacute stroke. Physical Therapy, 90(9),
1302-1310.
Iwama, M. K., Thomson, N. A., Macdonald, R. M., Iwama, M. K., Thomson, N.
A., & Macdonald, R. M. (2009). The Kawa model: The power of
culturally responsive occupational therapy. Disability and
Rehabilitation, 31(14), 1125-1135.
Jaracz, K., Grabowska-Fudala, B., Grna, K., Jaracz, J., Moczko, J., & Kozubski, W. (2015).
Burden in caregivers of long-term stroke survivors: Prevalence and determinants at 6
months and 5 years after stroke. Patient Education and Counseling, 98(8), 1011-1016.
Jaracz, K., Grabowska-Fudala, B., & Kozubski, W. (2012). Caregiver burden after stroke:
Towards a structural model. Neurologia i Neurochirurgia Polska, 46(3), 224-232.
Jeong, Y. G., Myong, J. P., & Koo, J. W. (2015). The modifying role of caregiver
burden on predictors of quality of life of caregivers of hospitalized
chronic stroke patients. Disability and Health Journal, 8(4), 619-625.9
30
Kniepmann, K. (2012). Female family carers for survivors of stroke: Occupational loss and
quality of life. The British Journal of Occupational Therapy, 75(5), 208-216.
Koh, G. C. H., Chen, C., Cheong, A., Choo, T. B., Pui, C. K., Phoon, F. N., ... & Koh, D. (2012).
Tradeoffs between effectiveness and efficiency in stroke rehabilitation. International
Journal of Stroke, 7(8), 606-614.
Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The PersonEnvironment-Occupation model: A transactive approach to occupational performance.
Canadian Journal of Occupational Therapy, 63(1), 9-23.
Lui, M. H. L., Lee, D. T., Greenwood, N., & Ross, F. M. (2012). Informal stroke caregivers self
appraised problemsolving abilities as a predictor of wellbeing and perceived social
support. Journal of Clinical Nursing, 21(12), 232-242.
Ong, P. H., & Koh, G. C. H. (2016). Caregiver factors in stroke: Are they the
missing piece of the puzzle? Archives of Physical Medicine and
Rehabilitation.
Ostwald, S. K., Godwin, K. M., Cron, S. G., Kelley, C. P., Hersch, G., & Davis, S. (2014).
Home-based psychoeducational and mailed information programs for stroke-caregiving
dyads post-discharge: a randomized trial. Disability and Rehabilitation, 36(1), 55-62.
Polatajko, H. J., & Mandich, A. (2004). Enabling occupation in children: The
Cognitive Orientation to daily Occupational Performance (COOP)
approach. Ottawa, ON: CAOT Publications ACE.

Polatajko, H. J., McEwen, S. E., Ryan, J. D., & Baum, C. M. (2012). Pilot
randomized controlled trial investigating cognitive strategy use to
improve goal performance after stroke. American Journal of
Occupational Therapy, 66(1), 104-109.
Stone, K. (2014). Enhancing preparedness and satisfaction of caregivers of patients discharged
from an inpatient rehabilitation facility using an interactive website. Rehabilitation
Nursing, 39(2), 76-85.
Townsend, E., & Wilcock, A. A. (2004). Occupational justice and client-centered practice: A
dialogue in progress. Canadian Journal of Occupational Therapy, 71(2), 75-87.
University of Utah Health Care. (2011). 2011 Report to the community: University of Utah
hospitals and clinics. Retrieved from
https://healthcare.utah.edu/publicaffairs/pdf/112888_uu_healthcare.pdf
University of Utah Health Care. (2016a). Dare to achieve. Retrieved from
http://healthcare.utah.edu/rehab/
University of Utah Health Care. (2016b). Stroke program. Retrieved from
http://healthcare.utah.edu/rehab/specialty_programs/stroke_program.php
University of Utah Health Care. (2016c). Inpatient outcomes. Retrieved from
http://healthcare.utah.edu/rehab/outcomes/inpatient.php
Young, M. E., Lutz, B. J., Creasy, K. R., Cox, K. J., & Martz, C. (2014). A comprehensive
assessment of family caregivers of stroke survivors during inpatient rehabilitation.
Disability and Rehabilitation, 36(22), 1892-1902.
31
32
33
Appendix A
Questions for healthcare providers
What, if any, types of education and/or resources (e.g., by the professional, pamphlets,
support groups) are currently provided in your setting for stroke survivors and their
caregivers? What is their response?

Is more education and/or additional resources ever requested? If so, what types?
What, if any, education is specifically provided to the caregiver? How do these caregivers
respond?
What are the most significant types of burden that you feel the caregivers you work with
are facing?
In your setting, what are the caregivers greatest fears about what their loved ones are
experiencing?
Have you noticed any instances of caregivers experiencing occupational loss (a decrease
in required/desired daily activities)? If so, in what areas do you find it is most prevalent
(e.g., social, leisure)?
Questions for caregivers
What education and/or resources do you currently receive in the healthcare setting
regarding your loved ones stroke?
Do you think this is adequate? What needs to be improved?
Are there resources that would be beneficial for you as the caregiver (e.g., pamphlets,
educational videos, support groups)?
When would be the best time to receive these resources (e.g., acute, inpatient, outpatient,
in the home, after therapies have stopped)?
What are your greatest fears about what your loved one is experiencing?
Do you feel overwhelmed by your new responsibilities as a caregiver? Have any of your
daily activities been affected (occupational loss), such as decreased social/leisure time?
34
35
Appendix B
Caregiver preparedness interview and administration

of COPM at Rehabilitation Center (30 minutes)
One-on-one education with OTR/L (60 minutes)
Caregiver fourpart education

and training
seriesDay
Group #1
National Stroke
Association and
American Heart
Association
Websites
List of
community
resources
Time
Two phone apps

(ComeBackStrong
and FoodSmarts)
Topic
1st Monday of the month
6:00 7:30 pm
Session 1: Basics of stroke and common symptoms
2nd Monday of the month
6:00 7:30 pm
Session 2: How to take care of oneself as the caregiver
3rd Monday of the month
6:00 7:30 pm
Session 3: How to support the stroke survivor
4th Monday of the month
6:00 7:30 pm
Session 4: Fun social activity
1st Wednesday of the month
6:00 7:30 pm
Session 1: Basics of stroke and common symptoms
2nd Wednesday of the month
6:00 7:30 pm
Session 2: How to take care of oneself as the caregiver
3rd Wednesday of the month
6:00 7:30 pm
Session 3: How to support the stroke survivor
4th Wednesday of the month
6:00 7:30 pm
Session 4: Fun social activity
Group #2
Figure 1. Flowsheet for proposed caregiver follow-up program with sample four-part education
and training series schedule.
Appendix C
36
Please check the following self-care and important daily activities that you
arent able to participate in as much as you would like.
Basic self-care
rest and sleep
healthy eating
exercise
showering and hygiene
regular doctors visits
Mental health
improving mindfulness
positive well-being
good quality of life
preventing depression
reducing stress and anxiety
Work and education
employment
volunteer
school
Daily life at home and in the community

taking care of pets
child care
finances
house care
meal preparation
shopping
Social participation
community
family
friends
Leisure
high demand (examples: running, hiking,
gardening)
low demand (examples: playing cards,
crafting, watching a movie)
CAREGIVER EDUCATION AND TRAINING PROGRAM
37
Please write down three that you circled that are especially important to you. Include a
short description of why its important and what is preventing you from doing this.
Example 1: Playing the piano I enjoy playing the piano and it is calming for me, but I dont
feel like I have enough time.
Example 2: Socializing I enjoy going out to dinner and to the movies with my friends, but I am
too busy and am concerned about money.
1. ___________________________________________________________________________
2. ___________________________________________________________________________
3. ___________________________________________________________________________
CO-OP Model
Goal: What do I want to do?
Plan: How am I going to do it?
Do: Do it (carry out the plan)
Check: How well did my plan work?
Using the topics of self-care or other important activities you identified above, please use
the following outlines to create two actions plans.
Example
Activity: playing the piano
Goal: I will play the piano more to reduce stress and participate in something I enjoy.
Plan: I will play the piano every Tuesday, Thursday, and Saturday for 15 minutes during the
month of December.
*Once I attain my goal: I will play a new piece I learned for a friend or buy myself a new
piano book at the end of December.
Do (when will you implement): I will start tomorrow, Saturday.
Check (how will you do this): I will use a phone app, such as Loop Habit Tracker and check
my progress on Dec 31. If I attained my goal, I will follow through with the plan above, and
play the piece for a friend or buy a new piano book.
38
Activity #1: _____________________________________________

Goal: I will _________________________ (goal) to _____________________ (how will it
help you).
Plan: I will _________________________ (goal) _______________________________
(time frame, how often, for how long).
*Once I attain my goal (something to look forward to): ___________________________
Do (when will you start): I will start _______________________________________ (when).
Check (how will you track your progress and check if youve completed your goal): I will
track my progress using _______________________. I will check if I completed my goal on
_____________ (date) and follow through with my plan to _______________ (from once I
attain my goal above).
Activity #2: _____________________________________________
Goal:
___________________________________________________________________________
___________________________________________________________________________
Plan:
___________________________________________________________________________
___________________________________________________________________________
*Once I attain my goal (something to look forward to): ___________________________
39
Do (when will you start): ______________________________________________________

___________________________________________________________________________
Check (how will you track your progress and check if youve completed your goal):
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
40
Appendix D
Table 1. Sample schedule for OTR/L during first year of proposed program.
Week of
Calendar
Year
Weeks 1-2
Weeks 3-4
Weeks 5-8
Weeks 9-12
One-on-one Education
Four-part series
Miscellaneous
20 hrs1
18 hrs/wk x 2 wks = 36 hrs

9 hrs/wk x 4 wks = 36 hrs3


Weeks 13-16
Weeks 17-20
Weeks 21-24
Weeks 25-28
Weeks 29-32
Weeks 33-36
Weeks 37-40
Weeks 41-44
Weeks 45-48


Weeks 49-50
Weeks 51-52
Total hours
1
396 hrs
212 hrs
9 hrs/wk x 2 wks =
18 hrs6
17.5 hrs/wk x 2 wks
= 35 hrs7
None8
72 hrs
Total = 681 hrs
Training and preparation

8 caregivers per week x 1.5 hours of one-on-one education = 12 hours; 6 hours per week for
other tasks (screening calls, visit preparation, paperwork, monitoring online support group)
3
4 caregivers per week x 1.5 hours of one-on-one education = 6 hours; 3 hours per week for
other tasks (screening calls, visit preparation, paperwork, monitoring online support group)
4
2 sessions per week (Monday and Wednesday) for 1.5 hours each = 3 hours; 2 hours for other
tasks (session preparation, paperwork)
5
2 sessions per week (Monday and Wednesday) for 1.5 hours each = 3 hours; 3 hours for other
tasks (session preparation, paperwork, monitoring online support group)
6
Completing program evaluations and compiling data
7
Writing paper, presentation, preparing for second year of program.
8
Holiday vacation
2
41
Table 2. Proposed budget for first year of program.

Line-Item Budget Detail
Source of Specific costs or sources of income
Cost
Start-up Costs
Preparation (materials, training, etc.)
OTR/L rate at $35/hour x 20 hours
$700
Total= $700
Direct Costs
$23,135
Part-time OTR/L Salary at Rehabilitation Center: $35/hour x
661 hours (see schedule above for details)
$1,000
Health insurance for one year
Indirect Costs
In Kind
Income
Total costs
Total income or
in-kind
contributions
Net cost of
program
Supplies
COPM (electronic version): $10 activation fee + $42 (bundle
price for 300 measures)
Printing costs: 25 sheets per participant x 176 participants X
$0.04 per sheet
Colored pencils: pack of 50
Pencil sharpener
Pens: pack of 36
Session 4 of series (fun activity) @ $25 ea x 22 sessions
Laptop
Miscellaneous
Conference/Travel
Total=
None
Will be able to use a conference room at the Rehabilitation
Center at Inpatient Hospital at U of U that accommodates 10
people. Chairs and a table will be available.
None
Total=
Budget Summary
$26,835
$0
$26,835
$52
$176
$10
$2
$12
$550
$500
$48
$650
$26,135
$0
42
43
Appendix E
Table 1. Participant Tracking Sheet
Participant #______
Met Participant Goal/Objective
Did Not Meet Participant

Goal/Objective
Rehabilitation
Center
Goal 1
Objective 1a
Goal 2
Objective 2a
Objective 2b
Four-part Series
Goal 1
Objective 1a
Objective 1b
Goal 2
Objective 2a
Objective 2b
Goal 3
Objective 3a
Objective 3b
Goal 4
Objective 4a
Objective 4b
Table 2. Group Tracking Sheet
Group #________
Rehabilitation
Center
Goal 1
Objective 1a
Goal 2
Objective 2a
Objective 2b
Four-part Series
Goal 1
Objective 1a
Objective 1b
Goal 2
Objective 2a
% Caregivers Met
Goal/Objective
Met Program
Goal/Objective
Did Not Meet

Program
Goal/Objective
44
Objective 2b
Goal 3
Objective 3a
Objective 3b
Goal 4
Objective 4a
Objective 4b
Goals, Objectives, and Caregiver Questionnaires for the Rehabilitation Center
Goal 1. To identify caregiver preparedness, including caregiver commitment, caregiver capacity,
and overall impact of stroke, in preparation for one-on-one education.
Objective 1a. Following caregiver preparedness interview, with mod verbal cues from OTR/L
80% of caregivers will identify three areas they would like to improve upon regarding their
caregiver skills.
Please list three areas you would like to improve upon with your caregiving skills:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
Goal 2. To address concerns identified on caregiver needs assessment, provide education about
the stroke, and identify goals using the COPM prior to stroke survivors discharge from the
hospital.
Objective 2a. Following one-on-one education with the OTR/L, 80% of caregivers will
independently describe the type of stroke and symptoms their stroke survivor experienced.
1. What type of stroke did your loved one have?
2. What happened to the brain when this type of stroke occurs?
3. Please list 5 main symptoms they are currently experiencing.
a. _____________________________________________
b. _____________________________________________
c. _____________________________________________
d. _____________________________________________
e. _____________________________________________
Objective 2b. After the administration of the COPM, 80% of caregivers will independently
identify their top five goals.
Please write the top give goals you identified on the COPM:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
45
4. _____________________________________________
5. _____________________________________________
Goals, Objectives, and Caregiver Questionnaires for Four-Part Education and Training
Series
Goal 1. To improve caregivers knowledge of basic anatomy, common symptoms, and potential
long-term effects of strokes.
Objective 1a. By end of session one, caregivers will independently complete a four brief quizzes
on the basics of stroke with 80% average accuracy on each.
Participants will be connected to this website
(https://nihseniorhealth.gov/stroke/quizzes.html) and will take the following four quizzes.
Scores will be recorded here:
Quiz - About Stroke: _____________
Quiz - Effects of a Stroke: _____________
Quiz Risk Factors for Stroke: _____________
Quiz - Rehabilitation After Stroke: _____________
Objective 1b. By end of session one, 85% of caregivers will independently identify and explain
three effects the stroke survivor is experiencing as a result of the stroke.
Please list three symptoms your loved one is experiencing as a result of the stroke and a
short description of each.
1. _____________________________________________
_____________________________________________
2. _____________________________________________
_____________________________________________
3. _____________________________________________
_____________________________________________
Goal 2. To help caregivers identify current caregiving concerns and develop feasible action plans
using the CO-OP model.
Objective 2a. By end of session two, 85% of caregivers will independently identify two
caregiving concerns that are negatively affecting their QOL.
Please identify/describe two caregiving concerns that are negatively affecting your
quality of life.
1. _____________________________________________
_____________________________________________
2. _____________________________________________
_____________________________________________
46
Objective 2b. Prior to session three, 85% of caregivers will implement two action plans using
CO-OP regarding their identified concerns with min verbal cues.
Using the concerns identified above, please use the following outlines to create an action
plan.
Concern #1: _____________________________________________
Goal: ________________________________________________________________
Plan: ________________________________________________________________
Do (when will you implement): ___________________________________________
Check (how will you do this): ____________________________________________
Concern #2: _____________________________________________
Goal: ________________________________________________________________
Plan: ________________________________________________________________
Goal 3. To help caregivers improve self-care skills and overall well-being.
Objective 3a. By end of session two, 85% of caregivers will independently identify three area of
self-care they would like to improve upon.
Please identify/describe three types of self-care you would like to improve upon.
1. _____________________________________________
_____________________________________________
2. _____________________________________________
_____________________________________________
Objective 3b. Prior to session three, 85% of caregivers will implement two action plans using
CO-OP regarding self-care activities with min verbal cues.
Using the areas of self-care identified above, please use the following outlines to create
an action plan.
Self-care #1: _____________________________________________
Goal: ________________________________________________________________
Plan: ________________________________________________________________
Self-care #2: _____________________________________________
Goal: ________________________________________________________________
Plan: ________________________________________________________________
47

Goal 4. To help caregivers identify and utilize community resources and social support.
Objective 4a. Prior to session four, 85% of caregivers will implement two action plans using COOP to access community resources with min verbal cues.
Please identify two community resources you would like to access and use the following
outlines to create an action plan.
Resource #1: _____________________________________________
Goal: ________________________________________________________________
Plan: ________________________________________________________________
Resource #2: _____________________________________________
Goal: ________________________________________________________________
Plan: ________________________________________________________________
Objective 4b. By end of session four, 85% of caregivers will identify three ways social support is
helpful for them.
Please list three ways social support during this activity or other experiences have helped you
in your caregiving role and/or well-being.
1. _____________________________________________
_____________________________________________
2. _____________________________________________
_____________________________________________
3. _____________________________________________
_____________________________________________
Program Evaluation Questions (caregiver fills out)
Please indicate how satisfied you were with this caregiver program:
a. Very satisfied
b. Somewhat satisfied
c. Neural
d. Somewhat dissatisfied
e. Very dissatisfied
Please indicate how helpful this caregiver program was for you:
a. Very helpful

b.
c.
d.
e.
48
Somewhat helpful
Neural
Somewhat helpful
Very helpful
Please indicate how likely you are to recommend this program to a friend or family member:
a. Very likely
b. Somewhat likely
c. Neural
d. Somewhat likely
e. Very likely
Please indicate three ways this program was helpful for you:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
Please indicate three ways this program could be improved:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
Please share any other thoughts, feedback, or suggestions you have about the caregiver program.
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Program Evaluation Questions (program OTR/L fills out)
Please indicate how satisfied you were with this caregiver program:
a. Very satisfied
b. Somewhat satisfied
c. Neural
d. Somewhat dissatisfied
e. Very dissatisfied
Please indicate how helpful you feel this program was for caregivers:
a. Very helpful
b. Somewhat helpful
c. Neural
d. Somewhat helpful
e. Very helpful
Did you receive positive feedback from caregivers throughout the program? Please describe:
______________________________________________________________________________
______________________________________________________________________________
49
______________________________________________________________________________
______________________________________________________________________________
Did you receive negative feedback from caregivers throughout the program? Please describe:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Did this program meet the proposed goals and/or objectives?
Yes No
Please list which goals and/or objectives were not met:

______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Please indicate why you dont think these goals and/or objectives were not met:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Please describe any feedback you have regarding logistics of the proposed program (e.g.,
training, set-up, timeline):
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Do you think this program could be expanded successfully to other locations and settings in Salt
Lake County? Please describe why or why not?
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Please share any other thoughts, feedback, or suggestions you have about the caregiver program:
______________________________________________________________________________
50
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________

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Running head: CAREGIVER EDUCATION AND TRAINING PROGRAM

Caregiver Education and Training Program:

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

physicians, physician assistants (PA), nurses, psychologists, social workers, occupational

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

basics of stroke: what is stroke, prevalence/statistics, types of strokes, potential

CAREGIVER EDUCATION AND TRAINING SERIES

improved, I received varying information from healthcare providers. Healthcare providers

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

Psychoeducation and problem-solving training. Jaracz, Grabowska-Fudala, and

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

*AHA, OTR/L, order of 2 in text

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

caregivers? What is their response?

Questions for caregivers

Do you think this is adequate? What needs to be improved?

CAREGIVER EDUCATION AND TRAINING SERIES

CAREGIVER EDUCATION AND TRAINING SERIES

Caregiver preparedness interview and administration

One-on-one education with OTR/L (60 minutes)

Caregiver fourpart education

Two phone apps

1st Monday of the month

Session 1: Basics of stroke and common symptoms

2nd Monday of the month

Session 2: How to take care of oneself as the caregiver

3rd Monday of the month

Session 3: How to support the stroke survivor

4th Monday of the month

Session 4: Fun social activity

1st Wednesday of the month

Session 1: Basics of stroke and common symptoms

2nd Wednesday of the month

Session 2: How to take care of oneself as the caregiver

3rd Wednesday of the month

Session 3: How to support the stroke survivor

4th Wednesday of the month