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Rehabilitation program for persons living with HIV/AIDS
Rory Devine, 2nd Year Occupational Therapy
INTRODUCTION
Occupational therapy enables individuals to engage in the occupations that are
meaningful to them in order to achieve the optimum quality of life for that
individual. The profession has classified the term ’occupation’ into three categories of
activity: self-care, leisure/play and productivity/work. Each of these areas may be
addressed in the process of therapy. It is the core tenet of the profession that
engagement in occupations can influence an individual's health and well-being, and as
a result, quality of life. The very name of occupational therapy, although now having a
far wider scope, links the profession with the rehabilitation of the worker.1 Historically,
occupational therapy assisted persons with disabilities to return to both work and the
community.2 Indeed, the profession was founded to address a perceived gap in the
medical service that allowed patients to be released from hospitals unfit for community
re-integration. 2
Vocational rehabilitation was defined by the Canadian Labour Office in 1973 as "the
continuous and coordinated process of rehabilitation, which involves the provision of
those vocational services designed to enable a disabled person to secure and retain
suitable employment".1 Joss (2002) notes that occupational therapy is one of the few
disciplines to "understand the relationships between the employee’s medical condition,
functional abilities, psychosocial status and work demands".3
HIV/AIDS IN THE 21st CENTURY
A number of studies conducted by the Centres for Disease Control and Prevention
(CDC) have indicated that deaths related to AIDS (Acquired Immune Deficiency
Syndrome) and HIV (human immunodeficiency virus) have decreased significantly in
the USA and the number of persons living with HIV/AIDS has increased.4,5,6,7 Early in
the AIDS epidemic, life expectancy was short and prognosis was poor.8,9,10 However,
today HIV/AIDS is increasingly being viewed as a chronic illness where individuals can
expect to live longer lives.5,7 These changes in life expectancy have been largely
attributed to new drug treatment combinations - such as nucleosides and protease
inhibitors - which, while reducing mortality, also help improve physical and mental
functioning.6,7,10 This dramatic change of events has led persons living with HIV/AIDS
to re-examine their outlook on life. As Braveman (2001) notes, clients who previously
sought counselling for the process of preparing for death, now seek counselling for the
process of living.6Bedell (2000) also highlights the impact of the realisation of a
lengthened life expectancy and the somewhat confusing and difficult issues it can raise
in individuals who had begun to prepare for death.5 Pequegnat and Stover (1999) call
for research and action to help individuals re-engage with life and cope with AIDS as a
chronic illness.7
OCCUPATIONAL THERAPY & VOCATIONAL REHABILITATION FOR
INDIVIDUALS LIVING WITH HIV/AIDS
Occupational therapy can have a crucial role in assisting persons living with HIV/AIDS
to re-engage with life, particularly through vocational rehabilitation programmes. The
American Occupational Therapy Association states that occupational therapists have
both a professional and ethical responsibility to provide services to persons living with
HIV/AIDS.4 Braveman (2001) mentions that, according to the CDC estimate for 1999,
96% of persons living with HIV/AIDS were between the ages of nineteen and sixty-four
i.e. prime working age.6 In a survey conducted at the Howard Brown Health Centre in
Chicago, of the 55 patients with HIV/AIDS questioned, 82% had discussed returning to
work and 66% felt optimistic about returning to work. 6 In his qualitative study of urban
gay males living with HIV/AIDS, Bedell (2000) found that all participants outlined the
importance of work in their lives.5 Bedell (2000) called for professionals to become
more involved with helping persons living with HIV/AIDS return to the
workplace.5According to Jacobs (1985), occupational therapy can provide the client
with a series of learning experiences that will enable the individual to make appropriate
vocational choices and develop the necessary work habits for eventual employment. 11
Using a process for guiding occupational therapists with the development of clinical
programmes, developed by Grossman and Bortone in 1986, Braveman and his
colleagues collaborated with the Howard Brown Health Centre to develop a communitybased work rehabilitation programme for persons living with HIV/AIDS, based on the
Model of Human Occupation, as outlined by Kielhofner.6 A four-phase programme was
designed which included both individual therapy and group education and support
sessions. Phase one of the programme allowed clients to explore and foster the
necessary daily habits and work skills to support a vocational role. The second phase
allowed further development of skills and habits through various voluntary work
placements. These experiences helped the client to determine his or her tolerance for
work and how fatigue and the side effects of various medications affected work
performance. During the third phase, clients were placed in paid employment or
returned to or entered formal education or job-training programmes. The final phase
concerned long-term support, follow-up and the availability of the programme’s staff to
intervene and provide support as necessary. Braveman (2001) reports that initial
outcomes were promising.6 Of those who participated in the trial, 37% returned to paid
employment/formal education and 33% were still in the programme developing skills
and taking part in internships. Braveman (2001) concludes by mentioning that providing
such services to the community can bring great reward for both the profession and the
individual occupational therapy practitioner.6
SOME OF THE BENEFITS OF WORK
A number of authors have outlined the importance of work, indicating the necessity of
vocational rehabilitation. Miller (1987) notes that work provides a routine and a
distraction away from the traumas of diagnosis or infection.12 Furthermore, he believes
that work is a vital part of learning to live with HIV/AIDS.12 Creek (2002) identified a
number of benefits of work to the individual e.g. giving people a role in society, a
means of earning, giving structure and purpose, providing a source of self-esteem,
social interaction, interest and satisfaction.13 Similarly, Bedell (2000) discovered that
participants in his study identified work with giving them a structure, social interaction
and stimulation.5 Other research has found that among individuals with HIV/AIDS,
usefulness to others was critical to psychological well-being, while not being a financial
burden was important to social well-being.7 Engagement in work could address both of
these issues. Pequegnat and Stover (1999) found that, in relation to research into other
chronic illnesses, strong positive correlation exists between returning to work and selfreported quality of life.7
BARRIERS THAT MAY EXIST
However, a number of barriers for persons living with HIV/AIDS returning to work exist
and must be at the forefront of the therapist’s mind when collaborating with the client in
a vocational rehabilitation programme. One major disincentive identified in research is
the possibility of losing disability benefits/payments.5,6 Yet, as Jacobs (1985) notes,
work includes all forms of productive activity, both paid and unpaid. 11 Bedell (2000)
suggests participation in volunteer work, community activities or creative projects, all of
which have the potential to be meaningful work activities.5 Perhaps a more disturbing
concern for individuals with HIV/AIDS returning to work is discrimination. Allen and
Giles (1987) note that persons living with HIV/AIDS may face a triple stigma - being
members of a stigmatised group (e.g. homosexual), having a disease that was possibly
sexually transmitted and having a terminal wasting illness.9 Aggleton et al. (1989) also
mention that persons living with HIV/AIDS face "widespread ignorance, fear and
prejudice".8 Miller (1987) also highlights the discrimination facing persons with
HIV/AIDS proclaiming that unlike other serious illnesses, HIV/AIDS does not generate
the same social sympathies, and that the stress created at the workplace may be
counterproductive.12 Regardless of whether or not such attitudes are as prevalent
today, Braveman (2001) discovered that among the individuals participating in his
study, disclosing HIV status to potential employers was one of the chief concerns
expressed.6Perhaps further research is required to determine the current attitudes of
employers toward employees with HIV/AIDS in the workplace. Indeed, better quality of
life is not guaranteed by returning to work, as discrimination may present a serious
source of distress.7 The occupational therapist, however, can provide psychological
support and counselling for the patient with regard to managing and coping at home
and in work.9
CONCLUSION
It is evident that occupational therapy has a strong and historical link to vocational
rehabilitation. Given the increasing numbers of individuals living with HIV/AIDS,
occupational therapy should expand the services that it can offer this growing clientgroup, services such as vocational rehabilitation. However, in order to do this
successfully, further research into the need for and efficacy of such programmes is
necessary. It is important to emphasise that research should address the client's self-
reported quality of life and satisfaction. Follow-up and support from programme staff is
vital as there may be periods of illness and limited function associated with HIV/AIDS
for which intervention is necessary.6 Finally, in practice, it should be remembered that
the client's needs and wishes should always take centre-stage if therapy is to be
meaningful. No therapist should ever assume that everyone has a desire to enter into a
programme of vocational rehabilitation and return to work.
REFERENCES
1. Canadian Association of Occupational Therapists (CAOT). Position paper on
Occupational Therapist's role in work related therapy. Canadian Journal of
Occupational Therapy 1988; 55:2-4.
2. Gutman SA. Occupational Therapy's link to vocational re-education, 1910 – 1925.
Am J Occup Ther 1997; 51:907-915.
3. Joss M. Occupational Therapy and Rehabilitation for work. British Journal of
Occupational Therapy 2002; 65:141-147.
4. American Occupational Therapy Association (AOTA). Position paper: providing
services for persons with HIV/AIDS and their caregivers. Am J Occup Ther 1996;
50:835-854.
5. Bedell G. Daily life for eight urban gay men with HIV/AIDS. Am J Occup Ther 2000;
54:197-206.
6. Braveman BH. Development of a community-based return to work programme for
people with AIDS. Occupational Therapy in Health Care 2001; 13:113-131.
7. Pequegnat W, Stover E. Behavioural research needs and challenges of new
treatments: AIDS as a chronic illness. New York: Plenum Publishers; 1999.
8. Aggleton P, Homans H, Mojsa J, Watson S, Watney S. AIDS: Scientific Research
and Social Issues - a resource for health educators. New York: Churchill Livingstone;
1989.
9. Allen ME, Giles GM. AIDS, ARC and the Occupational Therapist. British Journal of
Occupational Therapy 1987; 50:120-123.
10. Berkow R, Beirs MH. The Merck Manual of Medical Information - Home Edition.
New York: Pocket Books; 1997.
11. Jacobs K. Occupational Therapy: work related programmes and assessments. 2nd
ed. London: Little, Brown And Co.; 1985.
12. Miller D. Living with AIDS and HIV. London: Macmillan Press; 1987.
13. Creek J. Occupational Therapy and mental health. 3rd ed. London: Churchill
Livingstone; 2002.