Adults’ recollections and perceptions of childhood caregiving to a parent with significant physical disability

Lisa I. Iezzoni, M.D., M.Sc., Amy J. Wint, M.Sc., Karen A. Kuhlthau, Ph.D., Alexy Arauz Boudreau, M.D., M.P.H.

Disability and Health Journal, Volume 9, Issue 2
Published online: November 19, 2015

To examine children’s caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.

We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ≥21 years who as children (age < 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes.

Interviewees’ mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children’s care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions.

Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent.