FOSTER MOTHERS OF HIV-INFECTED CHILDREN

Karen F. Wyche, Ph.D.Department of PsychiatryUniversity of OklahomaHealth 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

FosterCHILD

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

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

Race/Ethnicity

Partner Status

Education

Income by Self Report

Background CharacteristicsFPT FP

ReligionProtestant 77 14Catholic 41 5Jewish 1 0

Health StatusHIV+ 1 0Good 93 16Fair 2 0 3

Background CharacteristicsFTP FP

Biological ChildrenFemale 112 21Male 126 3Deceased 9 5

Relatives in Home1-4 68 115 + 45 7none 7 2

Foster Child’s Health Status

FPT FPPrior FC Experience 28 4HIV FC Program

> 5 years 39 65 + years 42 7Kinship 15 2

HIV + FCFemale 211 32Male 257 46Sibling group 22 4

Characteristics Related to Foster Care

Characteristics Related to Foster Care FPT FP

Adoption of FCFemale 37 4Male 43 7

Lifetime Total FC 468 78Female 211 32Male 257 46Mean 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 behaviorsSpiritualFamilyEntertainment

Coping: Active (70%)

Domains Related to Foster Parenting

Job Definition

Child’s Health

Child’s Leaving Care

Agency IssuesTrainingCaseworkers

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. Theylook and treat you different. The agency recommendsdon’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 ascratch 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.”

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