The goal of rehabilitation for people with HIV is to improve quality of life and enable full participation in activities of choice by: *
- improving health
- improving quality of life
- improving or maintaining physical, social, functional, psychological and vocational potential
- enhancing independence
- preventing health problems from recurring or worsening
- restoring self-esteem, and
- improving self-sufficiency.
But for many people, rehabilitation in the context of HIV is still a relatively new field. In a 2004 survey of Canadian rehabilitation professionals – Fact Sheet: Canadian Providers Survey – Rehabilitation Professional’s Perspective – 66 per cent felt they did not have sufficient knowledge in this area. In a parallel survey – Fact Sheet: Canadian Providers Survey – HIV Specialist’s Perspective – 83 per cent of HIV specialists said rehabilitation for people living with HIV should be a larger priority.
Health and social care providers need to be aware of the range and types of rehabilitation services available and appropriate for people with HIV. Collaboration between disciplines is key to ensuring optimum care. The following examples describe some of the ways rehabilitation can address the needs of people with HIV.
Ellen suffers from bilateral peripheral sensory neuropathy in her feet resulting in occasional pain, numbness and parasthesia (tingling or “pins and needles”) making it difficult for her to walk long distances. The numbness sometimes makes it difficult to tell the temperature of the water in the shower or bathtub. She experiences fluctuating “good days” and “bad days” living with HIV – when she wakes up feeling extremely fatigued, unable to get around her house or walk up a flight of stairs, feeling weak and exhausted, unable to make it to the store to shop for groceries or make a meal for herself.
Ellen also has experienced some changes in her body composition, termed lipodystrophy, due to the antiretroviral medications. She has gained weight in her trunk area, and developed a buffalo hump at the back of her neck. She tells you that she is embarrassed by her appearance and is fearful that others will know that she is HIV positive. She has become more and more reluctant to get out and interact with others fearing stigma and discrimination she may experience from others due to her HIV status.
Physical rehabilitation can help individuals cope with physical impairments caused by HIV and the side effects of HIV medications. Physiatrists, physical therapists, occupational therapists, speech-language pathologists, audiologists and recreation therapists may all play a role.
Complementary therapies such as acupuncture, massage therapy, homeopathy and naturopathy are also commonly used by people living with HIV and can complement Western medical approaches.
Psychological rehabilitation and social supports
Jane has been living with HIV for several years. Recently she has been feeling quite alone and isolated. She has been getting sick more frequently and is now quite anxious as she worries about if, and when, she will get sick again. Sometimes she also feels overwhelmed with her various responsibilities. She finds it more difficult than usual to concentrate or focus, especially when several things are happening at the same time. She doesn’t know if it’s HIV, her medications or what else may be causing these problems.
Mental health is often affected when someone is living with HIV. Depression is common and psychological support may be critical to rehabilitation efforts.
Mental health professionals, counsellors and peer groups can play an important role. Social supports such as friends, family, cultural and community organizations can also provide emotional and practical support.
Lou has been HIV positive for 20 years, receiving CPP-D and LTD. He feels that he could have worked much of that time, but he was afraid of losing his CPP-D and private LTD benefits if he returned to work and then got sick again. He depended on both.
Staying in the workforce, or returning to the workforce after a period of illness, is often complicated for someone with HIV:
- There may be concern about stigma or discrimination if someone’s HIV status becomes public.
- Work environments are often not flexible enough to accommodate recurring periods of ill-health.
- If someone is receiving long-term disability and extended health benefits and returns to work, they may not be able to access benefits if they become ill again.
Vocational rehabilitation programs and some HIV organizations provide employment counselling, training and advocacy on these issues.
Finding services for people living with HIV
It can be challenging to determine what rehabilitation services would help because needs may vary. Cost is another factor. Some services may be covered or partially covered by public, employer or private insurance plans while others may not and may be too expensive without insurance coverage. Some rehabilitation providers may provide a sliding fee scale based on ability to pay.
HIV organizations or community organizations working with people with disabilities often provide a range of free services. They also are a good starting point for finding rehabilitation professionals and services that have experience working with people living with HIV.
- E-Module for Evidence-Informed HIV Rehabilitation
E-Module of this resource developed by the former Wellesley Central Hospital and Health Canada provides an excellent overview of rehabilitation services in the context of HIV.
- Introduction to Rehabilitation in the Context of HIV for Family Physicians
CWGHR developed this module on rehabilitation to complement the College of Family Physicians of Canada publication, HIV CARE: A Primer & Resource Guide for Family Physicians (no longer available online).