Presentation on theme: "FOSTER MOTHERS OF HIV-INFECTED CHILDREN Karen F. Wyche, Ph.D. Department of Psychiatry University of Oklahoma Health Sciences Center."— Presentation transcript:
FOSTER MOTHERS OF HIV-INFECTED CHILDREN Karen F. Wyche, Ph.D. Department of Psychiatry University of Oklahoma Health Sciences Center
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)
Foster Parent Literature Focus Abuse and Neglect Kinship Care Mental Health Issues of Foster Children Developmental Disabilities of Foster Children Permanency Placement and Adoption
Parental Factors Related to Child Placement Abuse and neglect Substance Abuse HIV/AIDS Poverty Incarceration War Multiple Risk Factors
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).
Foster Mother Narratives: Caring for HIV Infected Children in Foster Care Foster CHILD Foster Mother Biological Parent Foster Care Social Worker
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
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
Background Characteristics FPT FP Religion Protestant 77 14 Catholic 41 5 Jewish 1 0 Health Status HIV+ 1 0 Good 93 16 Fair 2 0 3
Background Characteristics FTP FP Biological Children Female 11221 Male 126 3 Deceased 9 5 Relatives in Home 1-4 6811 5 + 45 7 none 7 2
FPT FP Improved6918 Worse13 4 Deceased30 10 Current # FC in home: Mean = 3 (range 1-7) Foster Child’s Health Status
FPTFP Prior FC Experience 28 4 HIV FC Program > 5 years 39 6 5 + years 42 7 Kinship 15 2 HIV + FC Female 21132 Male25746 Sibling group 22 4 Characteristics Related to Foster Care
Characteristics Related to Foster Care FPT FP Adoption of FC Female 374 Male 43 7 Lifetime Total FC 468 78 Female 211 32 Male 257 46 Mean 4 4
Semi-Structured Interview Stress and Coping in Life Foster Parent Experience The qualitative data: Grounded Theory Approach Foster Parent Interviews (N=19)
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%) Stress and Coping Interview
Engage in healthy behaviors Spiritual Family Entertainment Coping: Active (70%)
Domains Related to Foster Parenting Job Definition Child’s Health Child’s Leaving Care Agency Issues Training Caseworkers
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.”
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.”
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.”
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.
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.” 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.” Who Knows about the Child’s Health?
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.” Child’s Knowledge of HIV Status
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.”
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.” 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.”
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.”
“ We learned how to care for the children and what to do if they got 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.” Trainings
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 Caseworkers
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
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.”
Training Mandatory number per year On line and in person Some at agencies, public health departments, other venues Basic information on care of HIV-infected child, psychological issues and more elaborate based on state and county resources
Training Wish List Developmentally and culturally appropriate Joint with caseworkers Specific issues of confidentiality, disclosure, sexuality, stigma Problem solving and coping strategies Multiple formats (in person, on-line, etc.) Use of experienced foster parents as trainers Current medical information (CDC, NYS Health Dept. HIV Training Institute, etc.)
Who Needs Training on How to Talk about Sexuality to Youth? Foster Parents /Parents Caseworkers Health Care trainees Health Care Professionals who are not in the HIV field Youth workers
Final Thoughts Need to consider system level interventions and multiple strategies to help child welfare agencies increase their capacity to provide appropriate and sensitive care to HIV-infected children System level partnerships can be developed with university centers and CBOs ( Bauermeister, Tross, & Ehrhardt, 2009) Development of sustainable products (curriculum, videos ( e.g., “Working it Out”), trainings, that are affordable and flexible for agency use Look beyond NY to other states with few resources
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