African-American, Hispanic, and Caucasian parents' perception and management of chronically ill children in the home

Abstract

<p>Advances in technology and knowledge have contributed to a growing population of children with chronic illness. Nurses caring for chronically ill children and their families in the home environment have witnessed a rapid increase in the occurrence and complexity of care that children receive at home. A challenge for pediatric nurses is to develop, teach, and deliver health care that is sensitive to a multicultural population. There is a lack of research regarding the experience of caring for a chronically ill child from a cultural perspective. The purpose of this study was to examine how African-American, Hispanic, and Caucasian families dealt with chronic illness of a child in the home. The study explains how family caregivers perceived the stresses of caregiving and how they managed the delivery of care for a child with bronchopulmonary dysplasia. The sample included families from 3 cultural groups: 5 African-Americans, 5 Hispanics, and 4 Caucasians. The 14 caregivers were interviewed in their homes using a semi-structured interview guide. Of these caregivers, 11 were the natural mothers, 1 was a foster mother, and 2 were custodial grandmothers. Grounded theory was used to develop a theory from systematically generated descriptive data. A major finding in this investigation was the universality of stressors and needs. The theory generated proposed that parental caregiving for a chronically ill child with bronchopulmonary dysplasia is learned throughout phases over time as caregivers respond to the adaptive tasks, stresses, and needs inherent in the different phases. Important cultural themes emerged from data collected from each cultural group that have implications to assist nurses to help culturally diverse families to become competent caregivers. The study provides relevant data regarding implications for caregiving and policy development. Implications from this study may be categorized into 3 areas: (a) implications for nurses and other health care professionals, (b) implications for caregiver education and support, and (c) policy implications for more effective support and management of chronic illness in the home. The results are among the first to provide information related to cultural care of chronically ill children.</p>