Research Findings

Wilson LS, Moskowitz JT, Acree M, Heyman MB, Harmatz P, Ferrado SJ, Folkman S. The economic burden of home care for children with HIV and other chronic illnesses. Am J Public Health. 2005 Aug;95(8):1445-52.

University of California, San Francisco, 3333 California, Box 0613, Suite 420M, San Francisco, CA 94143, USA. lwilson@itsa.ucsf.edu

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill children. METHODS: Caregivers of 97 HIV-positive children, 101 children with a chronic illness, and 102 healthy children were surveyed regarding amounts of paid and unpaid care provided. Caregiving value was determined according to national hourly earnings and a market replacement method. RESULTS: Chronically ill children required significantly more care time than HIV-positive children (7.8 vs 3.9 hours per day). Paid care accounted for 8% to 16% of care time. Annual costs were $9300 per HIV-positive child and $25,900 per chronically ill child. Estimated national annual costs are $86.5 million for HIV-positive children and $155 to $279 billion for chronically ill children. CONCLUSIONS: Informal caregiving represents a substantial economic value to society. The total care burden among chronically ill children is higher than that among children with HIV.


Wrubel J, Moskowitz JT, Richards TA, Prakke H, Acree M, Folkman S. Pediatric adherence: perspectives of mothers of children with HIV. Soc Sci Med. 2005 Dec;61(11):2423-33.

Osher Center for Integrative Medicine, University of California, Box 1726, San Francisco, CA 94143-1726, USA. wrubelj@ocim.ucsf.edu

This study approached pediatric adherence practices from the perspective of mothers of children with HIV in the USA. The study aimed to articulate what is involved in the daily life experience of giving or supervising a child’s HIV medication (i.e., adherence practices) in order to clarify, in more dynamic terms than is often found in adherence research, what promotes or impedes adherence. A team-based qualitative analytic approach was used to analyze the narrative responses of 71 maternal caregivers of children with HIV to interview questions regarding the activities and stresses of caring for a child with HIV. Four themes of dealing with medication on a daily basis that impacted mothers’ adherence practices emerged from the analysis: (1) Mothers’ attitudes and feelings related to adherence practices. (2) The impact of the medications on adherence practices. (3) Interactions of mothers and children related to adherence practices. (4) Developmental issues and responsibility for medication adherence. These themes, taken together, demonstrate the contextual and longitudinal factors that impact adherence and illustrate the complexity of influences on adherence practices. We found that adherence practices were impacted in a positive way by mothers’ commitment to adherence, and in a negative way by feelings of stigma and guilt, by the effects of bereavement on children and by children adopting their mothers’ attitudes about medications. The interactive process of giving medication was shaped by children’s behavior, mothers’ developmental expectations for children, and, for mothers with HIV, their adherence for themselves. We found that pediatric adherence often came at a cost to the caregiving mother’s well-being.


Heyman MB, Harmatz P, Acree M, Wilson L, Moskowitz JT, Ferrando S, Folkman S. Economic and psychologic costs for maternal caregivers of gastrostomy-dependent children. J Pediatr. 2004 Oct;145(4):511-6.

Department of Pediatrics, University of California San Francisco, 94143-0136, USA. mheyman@peds.ucsf.edu

OBJECTIVE: To examine the economic and psychologic costs of care provided by maternal caregivers to children with gastrostomy tube (GT) feedings. STUDY DESIGN: We conducted a 3-site study of primary maternal caregivers of 101 chronically ill children, with (n = 50) and without (n = 51) enteral nutrition support by GT to determine the time spent providing technical care, nontechnical care, and health care management and to assess depressive mood and quality of life. Associated costs were determined. RESULTS: Caregivers spent 339.7 +/- 34.1 (SEM) min/d to provide all care. Children with a GT required more than twice as much care time as children without a GT: 484.5 +/- 54.6 versus 197.8 +/- 30.6 min/d ( P < .0001). The mean annual total value of home care by the primary caregiver for a child with a GT was 37,232 dollars, compared with 15,004 dollars for the child without a GT. Caregivers of children with GT were no more depressed or less satisfied with their lives than caregivers of children without GT. CONCLUSIONS: Use of a GT for enteral nutrition support is associated with significant increased care time by the primary caregiver but not at additional psychologic cost compared with caring for chronically ill children.


Moskowitz JT, Butensky E, Harmatz P, Vichinsky E, Heyman MB, Acree M, Wrubel J, Wilson L, Folkman S. Caregiving time in sickle cell disease: Psychological effects in maternal caregivers. Pediatr Blood Cancer. 2006 Apr 18; [Epub ahead of print]

Department of Medicine, University of California San Francisco, Osher Center for Integrative Medicine, San Francisco, California.

BACKGROUND: Providing home care for a child with a chronic illness can be stressful for the family. The purpose of this paper is to examine patterns of caregiving and the associated psychological impact on maternal caregivers of children with sickle cell disease (SCD). PROCEDURE: Fourteen maternal caregivers of children with SCD were interviewed as part of a larger study of maternal caregivers of children with chronic illness. Forty-four caregivers of children with HIV and 36 caregivers of healthy children were included as comparison groups. Interviews included questions regarding amount of time spent providing care for the child (technical care, non-technical care, health care management), hospitalization, emergency room visits, illness stigma, and mental health of the caregiver. RESULTS: Children with SCD had significantly lower functional status and significantly more hospitalizations in the previous 3 months than children with HIV. Caregivers of children with SCD were more likely to work full-time and had higher incomes than caregivers of children with HIV. The three caregiving groups did not differ significantly on amount of total care, although caregivers of children with SCD and caregivers of children with HIV both reported significantly more time spent in technical care than caregivers of healthy children. Despite lower functional status of the children in the SCD group, when group comparisons on caregiving time variables were adjusted for child’s functional status, the differences between groups increased. This appeared to be due to the fact that caregivers in the HIV group spent more time in all caregiving categories except skin, crisis, and other care. In terms of caregiver mental health, caregivers of children with HIV and SCD had significantly higher depressive mood scores than caregivers of healthy children but the groups did not differ on caregiving burden. CONCLUSIONS: The perceived care burden of caregivers of children with SCD may be related to the unpredictable nature of the crisis care they provide. Additional attention is warranted to developing adequate resources for caregivers of children with SCD to mitigate the stress of unexpected crises. Pediatr Blood Cancer (c) 2006 Wiley-Liss, Inc.

Last modified: January 20, 2011