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Adults’ recollections of their experiences as young caregivers of family members with chronic physical illnesses

Authors


Nancy Lackey, Professor, School of Nursing, University of Missouri-Kansas City, 2220 Holmes Street, Kansas City, MO 64108-2676, USA. E-mail: lackeyn@umkc.edu

Abstract

Adults’ recollections of their experiences as young caregivers of family members with chronic physical illnesses

Aims of the study.  The aims of this study were to describe the number, kind, and intensity of caregiving activities performed by individuals who assumed caregiving responsibilities, as youngsters, for adults with chronic physical illnesses; to explore the meaning and effects of the caregiving experience on those individuals; and to examine positive and negative effects of caregiving then and now.

Background/Rationale.  Family mobility, demographic changes, and health care system changes in the United States of America (USA) have contributed to an increasing number of youngsters under the age of 18 caring for adults with chronic physical illnesses in the home. The effects of such caregiving on youngsters and the long-term effects on them as adults require study.

Design/Methods.  This descriptive, retrospective study had a convenience sample of 51 adults (age range 19–68 years now, 3–19 years then) who cared for their family members diagnosed with cancer, stroke, cardiovascular disease, multiple sclerosis or amyotrophic lateral sclerosis, respiratory disease, diabetes, or arthritis. Demographic data and caregiving data were analysed using descriptive statistics. The semistructured interview data were analysed using content analysis.

Results/Findings.  Of the caregiving care tasks most frequently performed, personal care was most difficult and household tasks were most time consuming. Family life, school, and time with friends were areas most likely to be affected by caregiving. Most subjects indicated they would permit their own children to assist with care as long as the youngster was not the sole caregiver. Youngsters need to be informed about the illness and caregiving tasks, have adequate support systems, and have some time to ‘still be a child’.

Conclusions.  Professional caregivers should raise questions in their practice regarding involvement in caregiving by both adults and youngsters. If youngsters participate in caregiving in the home, they need to receive adequate information regarding care and the illness trajectory. Family-related research including the long-term effects of such experiences on the youngsters and their families is recommended.

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