Erica Palma1, Janet A Deatrick2, Wendy L Hobbie3, Sue K Ogle4, Kyoko Kobayashi5, Linda Maldonado6. 1. Memorial Sloan-Kettering Cancer Center in New York, NY. 2. School of Nursing at the University of Pennsylvania. 3. The Children's Hospital, Philadelphia, PA. 4. Children's Hospital of Philadelphia in Pennsylvania. 5. Department of Child and Family Nursing at St. Luke's International University School of Nursing in Tokyo, Japan. 6. School of Nursing and the Centers for Global Women's Health and Health Equity Research, both at the University of Pennsylvania.
Abstract
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. 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.
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. 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.
Authors: Nicole SanGiacomo; Jennifer Toth; Wendy Hobbie; Elizabeth Broden; Elizabeth Ver Hoeve; Kathleen A Knafl; Lamia Barakat; Sue Ogle; Janet A Deatrick Journal: J Pediatr Oncol Nurs Date: 2019-05-03 Impact factor: 1.636
Authors: Janet A Deatrick; Lamia P Barakat; George J Knafl; Wendy Hobbie; Sue Ogle; Jill P Ginsberg; Michael J Fisher; Thomas Hardie; Maureen Reilly; Elizabeth Broden; Jennifer Toth; Nicole SanGiacomo; Kathleen A Knafl Journal: J Fam Psychol Date: 2018-04