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 HIVInfected People been Studied? Partner,

FOSTER MOTHERS OF
HIV-INFECTED CHILDREN
Karen F. Wyche, Ph.D.
Department of Psychiatry
University of Oklahoma
Health Sciences Center
How has Caregiving for HIVInfected 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
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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 Mother
Foster
CHILD
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
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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
Gender
Female
Male
Age
29-49
50-79
FP
64
22
19
0
49
65
10
9
Race/Ethnicity
Partner Status
Education
Income by Self Report
Background Characteristics
FPT
Religion
Protestant
Catholic
Jewish
Health Status
HIV+
Good
Fair
FP
77
41
1
14
5
0
1
93
20
0
16
3
Background Characteristics
Biological Children
Female
Male
Deceased
Relatives in Home
1-4
5+
none
FTP
FP
112
126
9
21
3
5
68
45
7
11
7
2
Foster Child’s Health Status
Improved
Worse
Deceased
FPT
69
13
30
FP
18
4
10
Current # FC in home: Mean = 3 (range 1-7)
Characteristics Related to Foster Care
Prior FC Experience
HIV FC Program
> 5 years
5 + years
Kinship
HIV + FC
Female
Male
Sibling group
FPT
28
FP
4
39
42
15
6
7
2
211
257
22
32
46
4
Characteristics Related to Foster Care
Adoption of FC
Female
Male
Lifetime Total FC
Female
Male
Mean
FPT
FP
37
43
468
211
257
4
4
7
78
32
46
4
Foster Parent Interviews (N=19)
Semi-Structured Interview
•Stress and Coping in Life
•Foster Parent Experience
The qualitative data: Grounded Theory Approach
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%)
Coping: Active (70%)
Engage in healthy behaviors
Spiritual
Family
Entertainment
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.
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.”
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.”
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.”
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.”
Trainings
“ 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.”
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
Issues of Concern for FP of HIVInfected Children
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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?
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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