Maternal Caregivers

NOTE: This study has ended.

What is it like to be a maternal caregiver of an HIV+ child?What is it like to be a maternal caregiver of a child with a chronic illness?

How are these experiences different from each other, and how are they different from the experiences of a maternal caregiver of a healthy child?

The Maternal Caregivers Study is a four-year tri-site study designed to answer these questions in great detail. We want to explain the relationship between mental health and the stress of caregiving in mothers of children with HIV/AIDS. We also want to estimate the economic costs of home care for children with HIV/AIDS provided by maternal caregivers. HIV/AIDS is shifting from a terminal illness to an illness more chronic in nature, due largely to the advent and subsequent improvements of antiretroviral therapy. In step with this shift, AIDS care has transitioned from hospital-based to in-home and community-based, a transition that reflects both the changing nature of the disease, and a general trend in how, where and by whom care for chronic illness is provided. We are interested in what this means for the caregiver. The informal (unpaid) caregiver is responsible not only for practical assistance and emotional support, but also much of the skilled care that was previously performed by nurses or trained staff. The Maternal Caregivers Study, like its predecessor, the UCSF Coping Project, will identify what is involved in caregiving, what is stressful, and how caregivers cope. In addition, the study aims to attach an economic value to the in-home care that is provided.

Who are maternal caregivers?

The maternal caregiver is the woman who has the primary responsibility for looking after a child in the home. She could be the biological mother, other female kin, such as an aunt or grandmother, a foster mother or an adoptive mother. We will interview maternal caregivers of three groups of children:

  • children with HIV/AIDS (infected via perinatal transmission)
  • children with chronic illnesses (such as Crohn’s disease, hemophilia, IBD) and
  • healthy children

The women will be matched across the three groups on ethnicity, age of child and relationship to child (biological or non-biological mother). In addition, the women in the HIV and Chronic Illness Groups will be matched on severity of the child’s illness.

Project Goals

Our specific aims are:

  1. Document the types and amount of home care provided by maternal caregivers of HIV+ children and compare it with the home care provided by maternal caregivers of healthy children.
  2. Identify the unique contribution of the child’s HIV serostatus and maternal caregiver’s serostatus to caregiving burden and mental health by comparing biological and non-biological mothers of children with HIV/AIDS and biological and non-biological mothers of children with other chronic illnesses.
  3. Test the utility of coping theory for explaining the relationship between the stress of caregiving and maternal caregiver’s mental health in three caregiving contexts: pediatric HIV/AIDS, other pediatric chronic illnesses, no pediatric chronic illnesses.
  4. Estimate the economic costs of the home care for children with HIV/AIDS compared to the home care for chronically ill children and healthy children.

Study Description

We will interview maternal caregivers 3 times over a 6 month period. The interviews have qualitative and quantitative components and last about 3 hours. In San Francisco, the interviews will take place at the UCSF Pediatric Clinical Research Center, and in Oakland they will take place at the Children’s Hospital Oakland Pediatric Clinical Research Center. In New York, the interviews will take place at the New York Presbyterian Hospital. At all sites interviews will be conducted in Spanish with caregivers for whom Spanish is the primary language. We provide child care and refreshments and will reimburse participants for parking and transportation costs. Participants are compensated $50 for each interview.

Recruitment

Recruitment started 7 June, 1999 and ended 28 September, 2001. All active interviews should be completed by June 2002.

Findings

The Maternal Caregiver Study has published four articles on the economic burden of caring for children with HIV, pediatric adherence, economic and psychologic costs of caring for gastrostomy-dependent children, and caregiving time in sickle cell disease. Please see the abstracts.

Staff

There were 21 researchers, analysts, recruiters, interviewers and project assistants in San Francisco, Oakland and New York. Meet the staff.

Last modified: October 22, 2012