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

Erica Palma
Wendy L. Hobbie
Sue K. Ogle
Kyoko Kobayashi
Linda Maldonado
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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