Maternal Caregiving Demands for Adolescent and Young Adult Survivors of Pediatric Brain Tumors

Erica Palma

Wendy Hobbie

Sue K. Ogle

Kyoko Kobayashi

Linda Maldonado

caregiver tasks, pediatric brain tumors, caregiving demands, caregiving burden, parents, qualitative research
ONF 2015, 42(3), 222-229. DOI: 10.1188/15.ONF.222-229

Purpose/Objectives: To examine the daily maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors who live with their families.

Design: A secondary analysis was conducted on interview data gathered during a large mixed-methods study that focused on perceived maternal caregiver competency and survivor health-related quality of life.

Setting: Home interviews.

Sample: A purposive sample of 46 maternal caregivers was selected from participants in the larger study.

Methods: Semistructured interviews were conducted with mothers. A directed content analysis was informed by Sullivan-Bolyai’s framework describing the components of primary caregiving.

Main Research Variables: Caregiving demands.

Findings: Data regarding four main categories of maternal daily caregiving demands were identified from 25 of the 46 interviews: managing the illness; identifying, accessing, and coordinating resources; assisting with everyday responsibilities; and fostering psychosocial health.

Conclusions: Potential day-to-day management tasks or demands of mothers of adolescent and young adult survivors of pediatric brain tumors were identified.

Implications for Nursing: The major demands of caregiving are similar to those for children with other chronic conditions, with the addition of assisting with everyday responsibilities and fostering psychosocial health.

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