FOSTER MOTHERS OF HIV-INFECTED CHILDREN

1. FOSTER MOTHERS OF HIV-INFECTED CHILDREN Karen F. Wyche, Ph.D. Department of Psychiatry University of Oklahoma Health Sciences Center

2. How has Caregiving for HIV-Infected People been Studied? Partner, family, friend caregivers of adults (e.g., Cadell, 2007; Moody, et al., 2009) Foster Parents and kinship care few studies (e.g., Mason& Linsk, 2002)

3. Foster Parent Literature Focus • Abuse and Neglect • Kinship Care • Mental Health Issues of Foster Children • Developmental Disabilities of Foster Children • Permanency Placement and Adoption

4. Parental Factors Related to Child Placement • Abuse and neglect • Substance Abuse • HIV/AIDS • Poverty • Incarceration • War • Multiple Risk Factors

13. Agency Question • How to recruit and retain foster parents for HIV –infected children? • Asked for training for potential and current foster parents. • Agreed to chart review of active certified foster parents (not identified) 1988-2003 to identify issues for training (N=119).

14. Foster Mother Narratives: Caring for HIV Infected Children in Foster Care Foster Mother Foster CHILD Biological Parent Foster Care Social Worker

15. Method • Chart Review of Foster Parents in program form 1988-2003 (N=119) • Interview of volunteer foster parents (N=19) • Semi –structured on a)stress and coping in their lives b) experience of being foster parent of HIV-infected child • Measures

16. Measures • Ways of Coping (Folkman & Lazarus, 1988) • Social Support (adapted)(Sarason, et al., 1983) • Religion Beliefs (Kenney, Cromwell, & Vaughan, 1977) • FP Sense of Competence (Johnson & Marsh, 1989) • FP Perception of Own vs. Foster Children (Molgard, l993) • Demographics

17. Background Characteristics FPT FP Gender Female 64 19 Male 22 0 Age 29-49 49 10 50-79 65 9

18. Race/Ethnicity

19. Partner Status

20. Education

21. Income by Self Report

22. Background CharacteristicsFPT FP Religion Protestant 77 14 Catholic 41 5 Jewish 1 0 Health Status HIV+ 1 0 Good 93 16 Fair 2 0 3

23. Background CharacteristicsFTP FP Biological Children Female 112 21 Male 126 3 Deceased 9 5 Relatives in Home 1-4 68 11 5 + 45 7 none 7 2

24. Foster Child’s Health Status FPT FP Improved 69 18 Worse 13 4 Deceased 30 10 Current # FC in home: Mean = 3 (range 1-7)

25. Characteristics Related to Foster Care FPT FP Prior FC Experience 28 4 HIV FC Program > 5 years 39 6 5 + years 42 7 Kinship 15 2 HIV + FC Female 211 32 Male 257 46 Sibling group 22 4

26. Characteristics Related to Foster CareFPT FP Adoption of FC Female 37 4 Male 43 7 Lifetime Total FC 468 78 Female 211 32 Male 257 46 Mean 44

27. Foster Parent Interviews (N=19) • Semi-Structured Interview • Stress and Coping in Life • Foster Parent Experience • The qualitative data: Grounded Theory Approach

28. Stress and Coping Interview Overall foster parent role was not as stressful as family Who Causes Stress? Own Family (54%) Foster care children/birth family (27%) Who do you go to for Problems? Family/Friends (57%) Type of Problems? Quality of life: money, domestic, health (60%)

29. Coping: Active (70%) • Engage in healthy behaviors • Spiritual • Family • Entertainment

30. Domains Related to Foster Parenting Job Definition Child’s Health Child’s Leaving Care Agency Issues Training Caseworkers

31. Professional “I am a child care person.” Professional and stigma “I say I am a foster parent and I take care of fragile children. I’ve actually lost a lot of friends, but I don’t care. I’m a foster parent to special needs children.”

32. Public Perception of Foster Parents “Most of them think foster parents do it for the money…70% do. When I first started I did it because I needed extra income. My girlfriend (15 years a foster parent) said take special needs, it’s not difficult. Boy was she wrong, because I took complicated cases. And then you fall in love with the kids and it is different. It’s not all about the money anymore.”

33. Mother Love One foster mother about a child she had from 2-7 yrs. “He was real sick, had a real big belly, no walk, no talk, they told me he may die within two to three weeks. But that was Ok. I gave love all the time. But he lived and now is 13. He is still positive.”

34. Mother Love “I love taking care of babies. The little baby’s parents died of AIDS. She is fine now. I wanted to keep her in the family. My daughter adopted her. You see, I am 64 years old and tired.

35. Who Knows about the Child’s Health? Family (100%) “My family, only my family. At first they didn’t understand, Now they see I did something nice.” “ We have kept it in the family. No one else needs to know.” “ My daughter. My son knows but doesn’t talk about it.”

36. Who Knows about the Child’s Health? Friends (46%) “Only one person other than my family. You know people treat you different. ..they are still scared and don’t know if it is safe to have a child with HIV. They look and treat you different. The agency recommends don’t tell anyone for fear of discrimination.”

37. Child’s Knowledge of HIV Status Should the child know? Yes (80% based on developmental issues) “Yes, if the right age, if old enough to handle it, but every child is different.” “No, the only thing he knows is that he has an illness that requires him to take a lot of medicine. I told him to be sure he comes to me if he has a scratch or cut.”

38. Child’s Health • “The drugs help and my child’s health has been really • good. But he is really overprotected.” • “My children’s health is good. I am lucky, you don’t do this • work if you get overwhelmed because it can take a lot of • work.”

39. My first child lived from 8 mo to 41/2. It has been 2 years now. He was the joy of our lives…he was miserable in the hospital, so we took him home. They gave us all the stuff we needed. To us it was a labor of love, not just the dying part, but the life he had before he passed.” Death “My first child lived from 8 mo to 4 1/2. It has been 2 years now. He was the joy of our lives…he was miserable in the hospital, so we took him home. They gave us all the stuff we needed. To us it was a labor of love, not just the dying part, but the life he had before he passed.”

40. Placement End “ Oh, my God! I cry and cry. I feel I lose something. “He was with me 4 years and it was more heartbreaking to see the pain in his face. I wanted to see him afterwards but they wouldn’t let me.”

41. Trainings “ We learned how to care for the children and what to do if theygot ill and emotional caring.” “ I would like more information on how to interact with the biological parents and what to share with the children.” “When she gets older, I will need more training on what to do When she starts dating. She will also need counseling.”

42. Caseworkers Don’t focus on their needs only child Caseworker should bridge the gap between foster parent, child, and birthparents. Don’t talk negative about birth parents. Most neutral about caseworker

43. Issues of Concern for FP of HIV-Infected Children • Adolescent development and high risk behaviors • Health • Sexuality • Mental health • Substance abuse • Run away • Stigma • Disclosure • Age of Foster Parent

44. Age Example • I: “ Are you taking any more children?” • FP:” I don’t know, sometimes you run into age. I started out in (year). • I: “ I don’t know your age. Remember you wouldn’t tell me. You strike me as someone who is full of energy.” • FP:”Yes, I don’t think of my age as it is (laughter). When you turn off the recorder maybe I’ll tell you.” • I: “ I going to turn it off right now.”