Evidence Based Practice Symposium - McMaster University

Living with mental health issues
Having mental health challenges seemed to add another
dimension of stigma and further contributed to participants
feeling marginalized by society.
Experiencing barriers to employment
Receiving disability supports instead of working or enjoying
retirement seemed to be a frustrating issue for many women.
Some of the participants described that these supports create a
disincentive to obtain employment.
Contrasting perceptions
Looking ahead to the future
Feeling hopeful: Some women spoke of the positive aspects of
aging, such as growing old with their families, retirement, and
travel. Being HIV-positive seemed to inspire a fighting spirit in
some women: “I want to be the oldest bitch before I die” (130).
Feeling stuck and living day by day: Women spoke negatively
of the future with regards to their deteriorating health and being
a burden on others. They expressed a general uncertainty for the
future and had few concrete plans, but instead lived “one day at
a time” (147). In this sense, some women appeared to be ‘stuck’.
Disclosing HIV status
Some women were considerate and deliberate about when, how,
and to whom they disclosed their HIV status, which helped to
form supportive and trusting relationships. Others expressed
being fearful of disclosing and subsequently being judged.
Being mobile physically and in the community
The extent to which women were mobile was a contributing
factor to their overall social and community participation.
Coping with and managing HIV
Feeling well and in control: Some women indicated that they
were feeling well, in spite of their health challenges, and had
learned to accept their limits and be “kinder” to themselves.
Making adjustments to their day-to-day living allowed them to
ascertain a sense of personal control over their lives: “I try to
live my life to make it as good as it can be… so I have to
balance” (136).
Feeling overwhelmed and underserved: Some women expressed
frustrations regarding the many health management
responsibilities they had, such as managing their many
medications and attending medical appointments. They also felt
that the current services available to them did not adequately
address their psychosocial needs: “unfortunately with this
disease is it can cause some pain and there’s not a drug or
anything that you can do to help it” (130).
Caring for others
Some women spoke of caring for others as being a complicating
factor as they aged with HIV, while others spoke of it positively,
saying that their children gave hope and meaning to their lives.
Contextual factors
Experiencing stigma
The women described perceiving stigma related to:
Gender and sexual orientation: The women felt that prevailing
societal beliefs that HIV affects primarily gay men meant that
they were not “in with the in crowd” (128). Gender-based
assumptions limited their ability to obtain support and access
services.
Aging: Participants also conceptualized stigma as it pertains to
older adults with HIV, and indicated how, as older women, their
appearance did not fit with societal expectations regarding how
people with HIV look: “I don’t look like an HIV-positive
person, you know, I’m too old, too grey, whatever. I don’t fit
into anybody’s idea of what it is” (136).
HIV: Many women described being the target of stigmatizing,
discriminatory actions that they attributed to their HIV-positive
status. The source of this discrimination was sometimes
healthcare providers.
Culture: Some of the women described being the target of
stigma or discrimination based on their cultural background, or a
location in which they had previously lived.
Viewing instrumental supports as inadequate
Participants indicated that their social participation was limited
by instrumental supports, such as government-run housing
subsidies and income support programs, which were inadequate.
DISCUSSION AND FUTURE DIRECTIONS
The results of this study elucidate a variety of factors associated
with social engagement and social isolation in women aging
with HIV, as well as several contextual factors that relate to
women’s overall social participation. Given that rehabilitation
focuses on enabling participation, these findings may assist
therapists in identifying challenges to participation with clients
and facilitating the collaborative development of client-centred
goals.
These findings add to the current body of knowledge
regarding social participation in clients with HIV by
illuminating in more detail the particular experiences of aging
women. This is the first study, to the authors’ knowledge,
examining social participation in aging women with HIV
through a rehabilitation lens.
However, questions still remain that could be addressed
by future research. The women in this study frequently had
difficulty pinpointing whether their challenges they experienced
were due to age-related processes, HIV infection, or side effects
of the medications they took. The women also reported sensing
layers of stigma, but were generally unable to articulate whether
the stigma they felt was attributable to sexism, ageism, or
negative sentiments toward people with HIV. Future research
might clarify the relationships between these intertwined levels
of complexity.
CONCLUSION
Women who are aging with HIV experience barriers and
facilitators to their social participation, which is also impacted
by elements of their environment. Rehabilitation professionals,
with a focus on enabling participation and facilitating clientcentred
change, are well-equipped to support this client
population in optimizing their social participation.
ACKNOWLEDGEMENTS
We would like to thank the women for their participation in this
study, as well as Nicole Gervais for her assistance with data
collection and her administrative support.
KEY REFERENCES
1. Public Health Agency of Canada. (2010). HIV/AIDS among older
Canadians. In HIV/AIDS epi updates (chap. 6). Retrieved from
http://www.phac-aspc.gc.ca/aids-sida/publication/epi/2010/pdf/
EN_Chapter6_Web.pdf
2. Shippy, R.A., & Karpiak, S.E. (2005). Perceptions of support among older
adults with HIV. Research on Aging, 27, 290-306.
3. Emlet, C.A. (2006). “You're awfully old to have this disease”: Experiences
of stigma and ageism in adults 50 years and older living with HIV/AIDS.
The Gerontologist, 46, 781-790. doi: 10.1093/geront/46.6.781
4. Solomon, P., & Wilkins, S. (2008). Participation among women living with
HIV: A rehabilitation perspective. AIDS Care, 20, 292-296.
5. Charmaz, K.C. (2006). Constructing grounded theory: A practical guide
through qualitative analysis. Thousand Oaks, CA: SAGE.