Understanding the experience of HIV/AIDS for women: Implications for

occupational therapists
Christine Beauregard ■ Patty Solomon

Key words
■ Human immunodeficiency virus ■ Occupational therapy practice, research-based ■ Qualitative studies

Abstract
Background.Within the past few years, HIV/AIDS has shifted from being an acute, palliative disease to one that is more chronic
and episodic in nature. This shift has major implications for the role of occupational therapy in women’s lives. Very few studies,
however, have examined the perspective of women living with HIV/AIDS from an occupational therapy perspective. Purpose.
This qualitative study was designed to examine the experiences of five women living with HIV/AIDS in Southern Ontario and to
begin to explore the implications of these findings for occupational therapy. Method. Through the implementation of five in-
depth interviews, a phenomenological approach was used to explore the lived experience of women with HIV/AIDS. Results.
Four main themes emerged: fearing disclosure, experiencing challenges (physical and psychological), having supportive net-
works, and coping positively with being HIV positive (spirituality and opportunity for living and learning). Practice
Implications. There are several potential roles for occupational therapy in working with women who are living with HIV/AIDS
More studies need to be pursued in this area of rehabilitation.

Résumé
Description générale. Au cours des dernières années, le VIH/SIDA est passé d’une maladie aigue et palliative à une maladie
chronique, de nature épisodique. Ce passage a des conséquences majeures sur le rôle de l’ergothérapie dans la vie des femmes.
Cependant, peu d’études ont porté sur la perspective des femmes atteintes du VIH/SIDA, d’un point de vue ergothérapique. But.
Cette étude qualitative a été conçue dans le but d’examiner les expériences de cinq femmes atteintes du VIH/SIDA vivant dans le
sud de l’Ontario et de commencer à examiner les conséquences de ces résultats pour l’ergothérapie. Méthodologie. À partir de
cinq entrevues en profondeur, une approche phénoménologique a été utilisée pour examiner l’expérience vécue par des femmes
atteintes du VIH/SIDA. Résultats. Quatre thèmes principaux ont été mis en relief : la crainte de divulguer le diagnostic, les
difficultés physiques et psychologiques associées au VIH/SIDA, le fait de pouvoir avoir recours à des réseaux de soutien et le fait de
s’adapter positivement au fait d’être séropositive (possibilité de croissance spirituelle, de croissance personnelle et d’apprentis-
sage). Conséquences pour la pratique. Plusieurs rôles sont possibles pour les ergothérapeutes oeuvrant auprès de femmes
atteintes du VIH/SIDA. D’autres études devront être menées dans ce domaine de la réadaptation.

I
n a global context, Acquired Immune Deficiency
Syndrome (AIDS) and Human Immunodeficiency Virus
(HIV) are words that are frequently attached to feelings of
fear, stigma and death. When AIDS was brought to light by
the medical community in 1981, it was believed to be a dis-
ease among gay men. Originally termed the Gay-Related
Immunodeficiency Disease, it was not until 1982 that its
name was changed to AIDS after documentation that it was
also being diagnosed in women (Berer, 1993; Kaplan, 1995).
In the western world, women now constitute the fastest grow-
ing population with HIV/AIDS (Wortley & Fleming, 1997).
As of December 31, 2000 there have been 1,330 reported
cases of AIDS and 5,419 reported cases of HIV in Canadian
women (Health Canada, 2001). Twenty-four percent of peo-
ple infected with HIV are women, with numbers continuing
to climb (Canadian AIDS Society, 2000). From a global per-
spective, in 1999, five million adults were reported as being
infected with HIV, 2.3 million of which were women
(Canadian AIDS Society, 2000). The most recent statistics,
according to Health Canada, report that at the end of 2002,
approximately 7,700 women were living with HIV (Health
Canada, 2005).
In biological terms, AIDS is the final stage of the HIV
which attacks the body’s immune system causing an individ-

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ual to become susceptible to opportunistic infections and
cancers (Fish & Rudman, 1998; Lang, 1993, Molineux, 1997;
Nixon & Cott, 2000). Recently, it has been recognized that
HIV and AIDS manifests itself differently physiologically
within women, and as such, some women are not being diag-
nosed until later stages of the disease process (Goicoechea-
Balbona, Barnaby, Ellis, & Foxworth, 2000; Hellinger, 1993;
Stuntzer-Gibson, 1991; Ward, 1993). There is need for more
research that examines the natural progression of HIV infec-
tion in women (Ellerbrock, Bush, Chamberland, & Oxtoby,
1991; Stuntzer-Gibson, 1991).
In socio-cultural terms, the transmission, diagnosis and
treatment of HIV/AIDS in women are influenced by many
factors including: access to medical services, level of income,
employment, education, environment, ethnicity, culture and
gender (Canadian AIDS Society, 2000; Kaplan, 1995).
Stuntzner-Gibson (1991) argues that HIV is a social concern
as it is often influenced by values and attitudes, as well as
underlying power structures, both economically and politi-
cally. Much of the literature that has examined HIV/AIDS in
women attributes the increased risk to economic marginaliza-
tion. Women of low socioeconomic backgrounds, who are
financially dependent or unemployed, are most at jeopardy
and are most likely to engage in risk behaviours to support
themselves and their children (Canadian AIDS Society, 2000).
Due to medical advances in medications and interven-
tions for HIV and AIDS, there has been an improvement in
health and life expectancy (Fish & Rudman, 1998; O’Dell,
Crawford, Bohi, & Bonner, 1991; Yallop, 2000). This has
resulted in a shift from being an acute, terminal disease to
one that is more chronic and episodic in nature. With this
change in natural history, people with HIV/AIDS are experi-
encing a variety of symptoms amenable to rehabilitation.
Treatment now focuses on learning to live with HIV instead
of preparing for death.
Occupational therapists can play an instrumental role in
helping people to live with HIV/AIDS by facilitating occupa-
tional performance (Fish & Rudman, 1998). It is essential
that occupational therapists understand women’s perspec-
tives so that their quality of life can be maximized and their
experience understood. Studies that have examined the
female experience of HIV/AIDS were published primarily in
the early 1990s, and have not accounted for the recent
advances in health care and HIV/AIDS. The purpose of this
study was to explore the experiences of women living with
HIV/AIDS in Ontario and to investigate the role of occupa-
tional therapy in the realm of HIV/AIDS.
Literature review
The experience of women with HIV/AIDS
Historically, in the western world, many researchers have
focused their investigations of HIV/AIDS on male experi-
ences (Richardson, 1989). These experiences were general-
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ized to those of women (Coward, 1994; Minkoff & DeHovitz,
1991). Studies that explore the experiences and narrations of
women are therefore limited and often overlooked.
The few studies that have been conducted on women with
HIV/AIDS suggest that they often experience isolation,
difficulty in disclosure, and a decrease in peer support networks
(Bisset & Gray, 1992; Canadian AIDS Society, 2000; Richardson,
1989). Other emotions that have been reported in women with
HIV include: denial, panic, shock, shame, fear, depression and
anger (Richardson, 1989; Stuntzer-Gibson, 1991; Walker, 1998).
The issue of disclosure is challenging for women particularly
when it means revealing their illness to their children and fam-
ily, and to workplace employers and co-workers. Disclosure of
HIV/ AIDS is often equated with the additional threat of rejec-
tion and isolation (Bisset & Gray, 1992; Canadian AIDS Society,
2000). Due to the stigma and sensitive nature of the disease,
sharing one’s HIV/AIDS status with others places women at
risk of being discriminated against. At the same time, disclosure
of HIV positive status can also open new opportunities and
supports. A paradox exists therefore in reaching a balance
between a woman’s fear of telling others about her disease and
wanting to disclose for her own need for support (Walker,
1998). The impact of these emotions may influence a woman’s
ability to complete occupations.
Women face several barriers within the medical commu-
nity including poverty, gender discrimination, intimidation
and lack of access to treatment information (Canadian AIDS
Society, 2000; Seals, Sowell, Demi, Cohen, & Guillory, 1995).
The Canadian AIDS Society (2000) reports that little is
known about the long-term physiological effects on the
female body. This is compounded by the fact that women are
frequently under-represented in clinical drug trials due to
limited access to appropriate and affordable childcare, and to
unpaid time off work. (Minkoff & DeHovitz, 1997; Seals et
al., 1995).
Using focus groups, Seals et al. (1995) reported a num-
ber of difficulties related to women’s use of HIV/AIDS social
services in the United States. Women reported difficulty in
knowing how and where to access services. They feared using
the services due to the consequences of disclosure. Some were
unable to afford the services or did not qualify as they were
not sick enough. They also experienced negative treatment
from persons working with social services.
Goicoechea-Balbona et al. (2000) found similar concerns
with the health and social service systems. Women highlighted
the importance of communication around health, living and
dying issues and the role that gender inequalities played in
terms of living with HIV. When compared to the services
available to gay men, the women found there were significant
differences in the degree and level of support.
Coward (1994) found that once diagnosed with HIV
women experienced fear, a sense of isolation and abandon-
ment and an enduring uncertainty about how others would
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view them and the course of the disease. Some women were
able to find solace in using other women with HIV/AIDS as
role models or inner strength from meditation and prayer.
The women indicated that their acceptance of their
HIV/AIDS status made a difference in their lives as it
"increased [their] sense of purpose and self-worth from
believing that their own unique experience could make a dif-
ference" (Coward, 1994, p. 334). In viewing AIDS as an
opportunity, the women in this study were able to have hope.
The paradoxes of isolation versus connectedness and accep-
tance of their disease versus hope for a cure were an influen-
tial component of the women’s experiences (Coward, 1994).
The role of occupational
therapy in HIV/AIDS
Few authors have examined the potential role of occupa-
tional therapy in women living with HIV/AIDS. As persons
with HIV/AIDS live longer, it is essential for rehabilitation
professionals to recognize AIDS-related disabilities and to
work with each person to create the most appropriate and
effective intervention plan (Nixon & Cott, 2000).
Rehabilitation professionals do not work with the HIV illness
alone, but also with the secondary manifestations and dis-
abilities that are part of the disease process (O’Dell, Hubert,
Lubeck, & O’Driscoll, 1996).
While people living with HIV/AIDS exhibit wide varia-
tion in the presentations of disease, there are typical clinical
symptoms (Lang, 1993). From a physical perspective, persons
may experience weakness, fatigue, decreased range of
motion, pain, and decreased ambulation (O’Dell & Dillon,
1992). Cognitively, some people may develop AIDS-related
dementia, experience anxiety, depression and apathy, suicidal
ideations and possible attempts, decreased initiation and
motivation, social withdrawal and memory impairments
(Fish & Rudman, 1998).
As the HIV/AIDS advances, a person’s independence
may begin to be compromised, particularly in activities of
daily living (ADL), such as walking, bathing and dressing.
Other areas of concern are the instrumental activities of daily
living (IADL), such as shopping, housekeeping, cooking, and
financial management. Stanton et al. (1994) argue that pro-
viding assistance with ADL and IADL "has the potential to
improve the patient’s quality of life, decrease morbidity and
forestall hospitalization or placement in a chronic care facil-
ity" (p. 1055), thus preventing the progression of impair-
ment. Interestingly, a study by O’Dell et al. (1996) found that
women demonstrated more physiological dysfunction in
ADL, IADL and mobility than men.
The interventions skills and techniques vary according
to the specific occupational performance need. For persons
experiencing difficulty with mobility and ambulation,
orthotic, splints and adaptive equipment may be utilized
(Fish & Rudman, 1998). Seating and wheelchair training,
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education concerning energy conservation and work simpli-
fication have been reported (Fish & Rudman, 1998;
Molineux, 1997; O’Dell & Dillon, 1992). Other areas of inter-
vention that focus on the cognitive perspective include edu-
cation about disease process, anger and stress management
and relaxation techniques. Occupational therapy can also
focus on exploring role changes, the development of social
support networks, links to community resources, exploration
of vocational roles, time management skills and environmen-
tal assessments (Fish & Rudman, 1998).
Only a few of the studies include insight into the disease
progression of HIV/AIDS from a woman’s perspective.
Therefore the specific rehabilitative needs of women, partic-
ularly from an occupational behavioural perspective, are not
addressed. Research that has been published is dated and
often not reflective of women’s current experiences. There is
a need for more studies that incorporate and evaluate the
occupational therapy needs of HIV positive women. This
qualitative study was conducted to explore the lived experi-
ence of women with HIV/AIDS in Ontario.
Method
In this study, a phenomenological approach was used to
explore the lived experience of women with HIV/AIDS. This
method, as described by van Manen (1990), was used to
encapsulate meaning and essence within each of the partici-
pants’ lived experiences. Through the use of a person’s words
and individual experiences, a phenomenological account
provides an essential source of knowledge for the reader
(McKibbon, 1999). Studying this fundamental nature of a
lived experience allows for a description of a primary account
of a person’s life from which meaning can be derived
(Creswell, 1998).
Participants
Five participants were recruited through flyers that were
posted at two AIDS service organizations from January until
April, 2002. Women were provided with an honorarium of
twenty dollars for their participation. Ethical considerations
were approved by the Research Ethics Board at McMaster
University. Each woman participated in a semi-structured
interview to obtain an in-depth personal view of her experi-
ence of living with HIV (Appendix A).
The age of the participants ranged between 40 and 48
years (M = 44.4 years). The length of time since diagnosis of
HIV varied from one year to fifteen years (M = 9.8 years).
The educational level of the participants ranged from Grade
7 to completion of two years of university. Two women
received social assistance, one worked full time, one woman
received long-term disability pension, and the fifth woman
was financially independent. All of the women volunteered
regularly with HIV/AIDS-related activities and programmes.
Four women had partners, while one woman was recently
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widowed. Four of the women were also parents. The inter-
viewer (C.B.) had met two participants prior to the inter-
views for other purposes. Although this may have influenced
the data-gathering process, this prior interaction allowed the
interviewees to feel more comfortable with the researcher
and the sensitive nature of the interview.
Procedure and data analysis
The interviews were conducted at a variety of locations
including a university setting, community HIV/AIDS sup-
port network, community health centre and a local library.
The length of the interview sessions varied from 45 minutes
to 100 minutes. Each interview was audiotaped and tran-
scribed verbatim. The transcriptions were read several times
so that the researcher could become immersed in their con-
tent. The transcriptions were entered into a qualitative soft-
ware program, Ethnograph, and were coded for themes and
categories using an open coding technique (Strauss &
Corbin, 1995). Each interview was initially analyzed and
coded by the researcher. From this coding, patterns and cate-
gories surfaced. Sections of the coded interviews were
reviewed and compared to identify specific themes. Codes
and themes were reviewed by another researcher (P.S.) to
ensure plausibility of the established themes. To add to the
truth of the study, direct quotes were extracted from the per-
sonal stories and feelings of the participants.
Results
Four main themes emerged that captured the lived experi-
ence of women with HIV/AIDS: fearing disclosure, experi-
encing challenges, having supportive networks and coping
positively with being HIV positive. Two of the themes have
sub themes: experiencing challenges has sub themes of phys-
ical and psychological challenges; coping positively with
being HIV positive has sub themes of spirituality and oppor-
tunity for learning and living (Figure 1). While these themes
were evident across the five participants, the women all had
different socioeconomic status, sexual orientation, insight
into their illness and life experience.
FIGURE 1
Themes.
Understanding the experience of HIV/AIDS for women
Fearing disclosure Experiencing challenges
Physical challenges Psychological challenges
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1. Fearing disclosure
The issue of disclosure of their HIV status was a prominent
theme faced by the participants. Due to the stigma associated
with the disease and the corresponding lack of knowledge,
these women experienced fear and anxiety about revealing
their positive status. Disclosure was a sensitive issue often
causing stress and apprehension due to the uncertainty of
how people would react. Similar to the study by Walker (1998)
the women experienced paradoxical emotions. On one hand,
the women expressed that they wanted to be honest and tell
people about their illness to get support and to educate
others. On the other hand, they feared being abandoned by
family members, particularly children, due to their lack of
understanding of HIV/AIDS. As the participants explained:
… we haven’t spoken openly about it. And ah, I didn’t
want to scare them off when I knew about my status
because the children – I didn’t know how they may have
taken it. So I thought there may have been stigma in the
house – not sharing the same cups, the toilet and every-
thing. So I didn’t talk about it.
… my heart is impassioned by this, and by my desire to
help people understand, and yet I am at a dilemma at
how do I disclose to my family… I want so much to be
there and to be open but I have so many fears about it.
And that is my biggest obstacle that I face right now.
You know, I was scared. I was scared to tell them [fam-
ily]. Not knowing how’d they react…. [feeling like] I’m
going to lose my family over this.
I guess we don’t disclose because we want to protect
them [family]… but I wish I could disclose just for the
sake of being honest… there will come a time… when it
will be the right time to do that. I hope by then that I will
know how to do it in the best way for them.
While disclosure was a concern for each of the partici-
pants, some of the women found it helpful to talk to some-
one who was living with HIV. The women viewed it as an
opportunity to help work through the issues that they were
Having supportive networks Coping positively
Spirituality Opportunity
for learning
and living
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facing with someone that could understand their issues. As
one women said:
It’s so much easier to be able to talk one on one with
someone that has it because then they know what you
are talking about and they know the kind of feelings that
you’re going through because they’ve gone through it.
2. Experiencing challenges
Throughout the interviews, the participants described chal-
lenges they had experienced as a result of their HIV positive
status. Although the duration of living with HIV/AIDS since
the initial diagnosis was different for each woman, the par-
ticipants experienced similar challenges both physically and
psychologically.
(a)Physical challenges
Each woman interviewed had experienced some form of
physical changes to her body since her diagnosis, either from
the virus or the medications she had taken to combat the
virus. The physical challenges included night sweats, restless
sleeps, increased fatigue, decrease in energy, weight loss and
feeling nauseous. Each of these physical aspects affected daily
functioning for these women in certain occupations, such as
getting up in the morning, maintaining employment, com-
pleting instrumental activities of daily living, and caring for
children and/or partners. Due to these physical challenges, it
was often difficult to plan their days or to anticipate future
events. As a participant explained:
… if I have chronic diarrhea, I can’t sit through a three
hour meeting. Not be there constantly, I have to get up and
go, come back and get up and go, and come back… or…
I don’t know from day to day whether I am going to be
fatigued… sometimes it takes me longer to recover. So if
somebody gets the flu and they are back to work in two
days, it may take me four days.
Other women reported the following physical challenges:
…lately I have been having a lot of night sweats which
are very uncomfortable because you are sleeping and you
wake up and you are drenched soaking, sweating. When
you take the blankets off and two minutes later you are
freezing… so it is not a restful sleep… in the morning, I
just don’t feel rested.
… [sometimes] you don’t even have enough energy to
pick your cup up…
The impact of these physical ailments have also pre-
vented the participants from being socially active at times.
One woman explains this:
When I feel tired or I’ve got fatigue I just feel like I am
not well and then I just take a rest. I don’t go out. I just
stay at home and then sometimes I have no appetite…
(b) Psychological challenges
Living with HIV/AIDS had also affected the women’s lives
psychologically as they have learned to cope with their diag-
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nosis, possible complications of medications and uncertainty
regarding the future. When initially told of their diagnoses,
the women worried about not knowing how long they would
live or what the disease process would be. They said:
So at first, I was ‘Okay, I can’t do anything, I can’t get
involved in anything, because I am going to get sick and
all of that stuff.
You’d be amazed at what goes through your head. I mean
I’ve never thought of suicide, but when you are told that
you have six months to live, believe me, the thought did
cross my mind.
Two women discussed the psychological impact of being
HIV positive from other people’s perspectives:
You are always thinking that ‘oh somebody is looking at
me, they know’. Ah! They must know… you tend to
think, ‘oh this person knows or suspects’. We’ve got very
suspicious minds and I guess when you are holding a
secret, when you are holding something that will have
such an impact, you tend to be very suspicious.
I was feeling all of these things… feeling guilty, feeling
ostracized, feeling like… that I am a different kind of
person.
Some of the women felt that they were "guinea pigs"
because the long term consequences of the specific medica-
tions had not yet been determined and they felt uncomfort-
able with knowing that side-effects of the medications could
be more difficult than the virus. Most of the participants
expressed uncertainty with respect to preparing the future in
terms of their children, retirement, being able to die at home
and to find work:
… you put mental pictures in your mind, you start
thinking, ‘Well am I going to be here to see my children
go to college, get married, see my grandchildren? Am I
going to, you know, be able to do the things that I
thought I would be able to do?’ And you sort of feel like
everything that you wanted in life is now changed…
… we don’t want a drug to keep us alive… if we’re going
to die, let us. Just give us something to ease the pain and
we want to be at home… we want to die in an atmos-
phere that we know and we’re happy… And if I am going
to die, I want to have the comforts and the realization
that I know I am at home… I don’t want to die in a hos-
pital and I don’t want to die as a number.
3. Having supportive networks
A common theme among the five women was the value they
placed on being surrounded by supportive networks, includ-
ing partners and community resources. In three of the
women’s personal relationships, their partners or spouses
were very supportive. In two of these relationships, the part-
ners were also living with HIV/AIDS. The women found that
having someone who is sensitive and supportive was impor-
tant in helping them deal with daily health situations arising
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from the HIV/AIDS. As one woman said: "… My partner is
important in my life because she is, um, a very strong person,
and she makes me feel safe. And ah, there isn’t anything that
I can’t come to her to get help with."
The women have felt supported by resources in the
community, in particular the community HIV/AIDS support
networks. Working with other women with HIV/AIDS has
been a positive experience for some of the participants, serv-
ing as inspiration and encouragement to themselves.
Women’s support groups, run through this organization,
have allowed the participants to feel that they are not alone
and not the only women with HIV/AIDS.
… for the longest time, believe me, I felt like the only
one… I would go to the doctor, go to the SIS [Special
Immunization Services], and I seemed to be the only
woman going into the SIS. Well I was starting to won-
der… but then I found out that yes, there are other
women going into the SIS… and its actually nice to
know because then I know that there is somebody out
there going through what I am going through so I can
talk to them and see how they handled it or how they are
handling it…
4. Coping positively with being HIV positive
Although each of the women had experienced several chal-
lenges due to being HIV positive, they also noted positive
influences on their lives that helped them to cope with their
HIV status.
(a) Spirituality
Spirituality and a belief in a higher power provided a sense of
encouragement and support. This higher power combated
the feelings of isolation and gave them strength to cope with
the everyday challenges. As one participant stated,
[God] gives me joy each day to be able to say that today
is a new day and that I will make the best of it, and to be
happy in it, and if I don’t get another today… I’ll be sat-
isfied because I have done what I can.
(b) Opportunity for learning and living
Each of the women expressed that through their experience
with HIV/AIDS, they have realized how precious every day is,
and thus developed an appreciation for life and "enjoying the
moment." Through learning how to appreciate life and their
role in it, participants felt that they began to learn more
about themselves and the disease, allowing them to begin to
take more control over their lives.
I’ve come to the belief in life that you are where you are
supposed to be and the things that happen to you are
things that are supposed to happen to you so that you
learn.
You always carry things, you can’t leave anything from
behind and who you are today is because of what was
there yesterday… I’ve grown a lot… I’ve learned a lot…
I think that that positive attitude has been the one that
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got me through and given me the courage to do the
things that I needed to do and wanted to do…
And its so important to maintain, for people with HIV, to
be able to maintain as much control in their lives as pos-
sible, because we lose control in many, many, many ways.
… to be able to overcome [facing death] and realize that
I can make the quality of my life better… that’s what has
encouraged me is that I can make a difference. I can
improve my quality of life through my attitude, through
my behaviour.
Discussion
This qualitative study focused on understanding the lived
experience of five women with HIV/AIDS in Ontario. Similar
to the findings by Bisset and Gray (1992), these women had
difficulty in disclosing their HIV positive status to close
friends and family for fear of isolation and not being under-
stood by others. The need to disclose their status and share
their concerns with others was reinforced by their need for
personal support and understanding. The solace women
found in talking to other women living with HIV was similar
to that described by Coward (1994).
This study builds on the work of others by illustrating
the impact of the illness on the women’s ability to complete
their daily activities and by highlighting the influence of their
HIV status on their quality of life. Disclosure of their status
caused a heightened level of anxiety, which in some of the
cases, led to increased stress and fatigue, and uncertainty in
seeking medical support. This stress and fatigue prevented
them from carrying out daily activities, such as caring for
children or preparing meals. The refusal to disclose may
cause difficulty for the client physically, cognitively and affec-
tively. Occupational therapists working closely with these
women must respect their desire for confidentiality and their
inability to deal with disclosing to others. The findings of this
study identify an important role that occupational therapists
have in helping women to find support channels to learn how
to disclose when the client is ready to do so. It is essential to
reiterate that disclosure is a sensitive issue for some women,
in which case it may not be an area the client wants to
address. In this situation, the occupational therapist must
remain client-centred and respect the client’s decision.
The women in this study expressed an appreciation for
life after coming to terms with their HIV positive status.
These women interpreted their experience in living with
HIV/AIDS as something that they were meant to endure in
order to learn from it and to make positive changes in their
lives. For one woman it was returning to school, and for
another it was becoming free of substance abuse. With the
exception of one woman, these participants had been living
with HIV for an extended length of time and most had sup-
portive personal networks, which could account for the pos-
itive acceptance.
© CAOT PUBLICATIONS ACE

Although previous literature has focused on the physical
component of HIV/AIDS, very few studies have examined
the implications of living with the physical and psychological
aspects of the disease from a woman’s perspective. Through
the voices of these women, it is evident that the physical
changes to their bodies influences their occupational perfor-
mance and ability to complete activities of daily living, such
as being socially active or sitting through a day of work.
Occupational therapists can work with women to develop
strategies to adapt or modify their homes, workplaces or life
styles to help reduce fatigue, weakness or pain. Insight into
physical or psychological factors affecting a client’s ability to
perform activities of daily living can be useful when com-
pleting assessments or developing treatment plans with
women who are HIV positive. Fulfilling certain roles, such as
being a mother or co-worker, may become difficult for some
women. A holistic and client-centred perspective can help to
enable the occupational therapist to gain a comprehensive
understanding of how the disease is impacting the life of the
woman and therefore implement specific interventions that
will be effective for her.
This study also revealed the psychological challenges of
coping with the uncertainty of the long-term effects of the
medications. It is essential for occupational therapists to
understand how different women cope with their diagnosis
and disease process so that they can be a part of the support-
ive network that is instrumental in providing compassionate
and encouraging care. It is important to be aware of what
hinders and helps the coping process for women.
The results of this study reinforce the need for support
groups for women with HIV/AIDS. Assisting in the develop-
ment of supportive networks for women with HIV/AIDS can
be an essential role for occupational therapy, as this support
can impact on the client’s overall occupational performance.
Occupational therapists can also play a vital role in advocat-
ing for their clients, particularly when community support
networks may be limited. Referring clients to appropriate
community resources can assist clients in finding support
they may not know is available.
Although it is difficult to generalize findings of a phe-
nomenological study, this particular study provides insight
and understanding into the experience of women and impli-
cations for the profession of occupational therapy. Although
this study looked at five women with similar experiences, all
of the participants had unique life experiences that impacted
on how they were living with HIV/AIDS. The women came
from different life situations, socioeconomic backgrounds,
sexual orientations and had varying insight into their illness.
These differences affected their experience of living with
HIV/AIDS. Although women are linked together through
their gender, it does not mean that their individual experi-
ences will necessarily be the same. Occupational therapists
must respect the individuality of a person’s experience and
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BEAUREGARD & SOLOMON
treat each client with dignity and respect within a client-cen-
tred manner.
One limitation of this study relates to the relatively small
sample size and the fact that interviews with the women were
only able to occur on one occasion. Difficulties with accessi-
bility due to uncertainty of the illness influenced the time
available for interviews. As this is a new area of practice for
occupational therapy, and one with great potential for
growth, it was felt that the findings of this study can con-
tribute to this new area of research. Future areas of research
should focus on interviewing a wider spectrum of women of
different socio-economic and cultural backgrounds. In
Canada, aboriginal women represent a disproportionate
number of HIV positive women, and further inquiry is
required to better understand their perspective. In addition,
as the focus of the study was global in nature, the researchers
did not specifically examine how the disease affects occupa-
tional behaviour. A more specific focus on occupational
behaviour in future research will be useful in further inform-
ing potential roles for occupational therapists.
It is through the stories and words of women living with
HIV/AIDS that occupational therapists may maintain a
client-centred focus within our practice and help women to
maintain their quality of life. More research needs to be done
to understand the experience of women living with
HIV/AIDS in order to gain a comprehensive view of the
implications for occupational therapy and other health care
professionals. Understanding the client’s perspective is a fun-
damental component of occupational therapy practice.
Acknowledgements
The authors would like to express their appreciation to these
five women for volunteering to participate in this study and
for sharing stories that were personal and courageous. They
would also like to thank Dr. Seanne Wilkins for helpful com-
ments and review of an earlier version of this manuscript.
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Authors
Christine Beauregard, MSc(OT) at the time of writing was a grad-
uate student at McMaster University and is an occupational
therapist, Capital Health, NE Office, #500, 10611 Kingsway
Ave., Edmonton, AB T5G 3C8.
E-mail: chrissybeau@hotmail.com
Patty Solomon, PhD, PT is Professor, School of Rehabilitation
Science, Institute of Applied Health Sciences (IAHS), McMaster
University, Hamilton, ON.
APPENDIX A
Interview questions1.
1. Please describe some of the things you do during a typical
day. Please describe changes you have found related to living
with HIV/AIDS.
2. What activities are most important to you and why?
Have you noticed any changes?
3. Please describe to me some of the people in your life who are
important to you and why?
Have some of these people changed?
Have new people entered? Some not as involved?
How does that feel? What does it mean to you?
4. Please describe yourself to me. (if someone knew you well,
how would they describe you)
What are your goals?
How have things changed since being diagnosed with
HIV/AIDS?
5. What are the most significant events that have happened in
your life?
6. What do you think influences the decisions that you make
and what you do on a daily basis?
What helps this process? What makes decisions difficult?
What do you do when you run into difficulties?
Are there certain people that you can talk to?
7. What kind of health professionals have you worked with?
Who have been the most helpful and why?
Who have more difficult to work with and why?
8. What advice can you give other people living with HIV/AIDS?
Family, friends, health care providers
9. What do you think health care professionals should know
about HIV/AIDS in order to be most helpful?
10. Is there anything else that you would like to discuss?
1
Please note that some of the questions used during the interview were adapted
from the following study: Bedell, G. (2000). Daily life for eight urban gay men with
HIV/AIDS. American Journal of Occupational Therapy, 54, 197-206.
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