The Impact of HIV on Caregivers PHASE, Canadian Psychological Association and Health Canada Module developed by Jennifer Hendrick, Ph.D. Queen Elizabeth II Health Sciences Centre Halifax, Nova Scotia

1 Informal Caregivers

2 Informal caregivers are... Providers of physical, emotional, and spiritual care Lovers, parents, siblings, children, friends of PWAs Not paid or professionally trained for the role.

3 AIDS caregivers are different from “traditional” caregivers. PWHAs are younger Stigma of HIV/AIDS Fear of contagion Caregivers are often younger, male, unprepared Fewer community resources

4 Informal AIDS caregivers are unsung heroes. They: Help PWA stay at home longer Reduce or avoid hospital admissions Reduce reliance on professional caregivers Help maintain quality of life.

5 Caregiving is not for wimps! Multiple tasks/roles Unpredictability 24-hour shifts Fear of contagion Role blurring Lack of recognition Feeling of helplessness Lack of training Family conflicts Going public Financial strain Red tape

6 According to the experts … The top five issues of AIDS caregiving are: 1. Living with loss and dying 2. Managing and being managed by HIV 3. Renegotiating relationship between caregiver and PWHA 4. Going public 5. Containing spread of HIV. Brown & Powell-Cope (1992)

7 HIV+ caregivers carry a heavier burden. Folkman et al. (1994) longitudinal study with gay male caregivers of gay PWAs “burden”: HIV+ cgivers > HIV- cgivers

8 HIV+ caregivers carry a heavier burden because of : Physical limitations Emotional distress Projection Financial hardship Survivor guilt.

9 HIV+ parents are HIV+ caregivers In 1997, a Hospital for Sick Children study listed the following stresses for HIV+ parents: -living with uncertainty, coping with stress -arranging for guardianship of children -complex family and health relationship issues -disclosure, discrimination -social and community stressors (poverty).

10 Caregiving can hurt... Physical illness (e.g., Alzheimer’s disease caregivers have a lower immune function and take more illness days) Depression, anger, anxiety, anticipatory grief Financial hardship Social isolation Poor work performance.

11 … but it can also be rewarding! Caregivers can find: >A sense of meaning >A sense of identity >An opportunity to show competence >Moments of true intimacy >A greater appreciation for life.

12 We can help with the caregiver’s burden. Link them to community support groups and to other professional caregivers. Provide support groups. Provide therapy for individuals, couples, and families: stress management, coping skills, exploring expectations, managing distressing emotions, helping to anticipate what lies ahead.

13 Professional Caregivers

14 Professionals caregivers are … Financially compensated Professional trained Medical and mental health professionals.

15 “HIV is a whole different ballgame.” Stigma Young age of clients/patients Fear of contagion Unpredictable course illness Lack of resources, support Multiple losses, deaths Ethical and legal dilemmas.

16 What We Bring to the Dance Our attitudes, beliefs and experiences about: -Sexuality, sexual orientation -Drug use -Sex work -Illness -Death -Professional omnipotence.

17 “I know exactly what you’re talking about.” Shared characteristics can be a double- edged sword for professional caregivers: e.g., gay male caregivers HIV+ caregivers

18 Helping others can hurt. Increased irritability AIDS-related nightmares Physical exhaustion, illness Reduced interest in work, personal life Devaluation of, or distancing from, clients Intrusive thoughts.

19 When Hurt Becomes Burnout Depression Anxiety disorders Substance abuse Impaired work performance Impaired personal relationships Physical illnesses.

20 Burnout doesn’t just happen! It can be caused by: Role ambiguity Isolation on the job Lack of recognition Lack of support network No breaks in the action Unrealistic expectations for self and/or others Work overload.

21 Rx for the caregiver: “Practice What You Preach.” Be reflective – seek out supervision or therapy Do grief work for self Limit caseload; use case mix Set clear boundaries Use stress management skills Cultivate a healthy personal lifestyle.

22 Let’s not forget the good stuff! Privilege of bearing witness to a journey Appreciation for all life Opportunities for learning Intellectual stimulation Participating in a cutting-edge field.

23 Case Study: Jim 35-year-old HIV+ gay man, asymptomatic, works full-time, cut off from family. 16-year relationship with Bob, HIV+, who is quite ill: he has left his job, has chronic diarrhea, little energy, severe wasting. Jim has taken over finances, housework; has stopped working overtime, travelling. Jim reports anxiety symptoms that adversely affect his work.

24 Questions for Discussion Re Case Study 1. What issues or difficulties could be contributing to the client’s symptoms ? 2. How would you and your client determine therapeutic goals ? 3. How would you intervene or work with the client ? 4. What referrals would you suggest or offer?

25 Case Study: Wanda 23-year-old HIV+ mother of 5-month-old son hospitalized and diagnosed with AIDS. Baby’s father, Wanda’s ex, is also HIV+. Wanda’s symptoms include poor sleep and appetite, impaired concentration and memory, guilt feelings. Wanda is unemployed; plans to live with her parents, who insist she keep quiet about HIV.

26 Questions for discussion Re: case study 1. What issues or difficulties could be contributing to the client’s symptoms ? 2. How would you and your client determine therapeutic goals ? 3. How would you intervene or work with the client ? 4. What referrals would you suggest or offer?

27 Case Study: Steven Steven, age 35, is a mental health professional working full-time at an HIV clinic, and is also involved in HIV-related community activities. He recently ended a relationship with George. Also, his brother died last year. He’s been dreading work, devaluing patients, and drinking more than usual.

28 Questions for Discussion Re Case Study 1. What issues or difficulties could be contributing to the client’s symptoms ? 2. How would you and your client determine therapeutic goals ? 3. How would you intervene or work with the client ? 4. What referrals would you suggest or offer?