Roberta L Woodgate1, Ketan Tailor2, Rochelle Yanofsky3, Magimairajan Issai Vanan4. 1. Faculty of Health Sciences, College of Nursing, University of Manitoba, R3T 2N2, Winnipeg, Canada. Electronic address: Roberta.Woodgate@umanitoba.ca. 2. Department of Counselor Education and Counseling Psychology, Marquette University, Schroeder Health & Education Complex, 561 N 15th Street, Milwaukee, WI, USA. 3. Department of Pediatric Hematology/Oncology, CancerCare Manitoba, R3E 0V9, Winnipeg, Canada. 4. Department of Pediatric Neuro-Oncology, CancerCare Manitoba, R3E 0V9, Winnipeg, Canada.
Abstract
PURPOSE: The multiple late-effects experienced by survivors of childhood brain tumors, are not only a source of great distress for survivors, but also for their parents and siblings. The aim of this review is to systematically identify and synthesize qualitative evidence on how survivors of childhood brain tumors and their parents experience life after surviving childhood brain tumors. METHODS: Based on literature search in seven databases, 10 qualitative studies, published between 2004 and 2014 were included. RESULTS: Surviving a childhood brain tumor was experienced as paradox for survivors and their parents. While parents and survivors celebrated making it through the cancer experience, they nonetheless encountered a world with loss and new challenges. In short, the experience of survival was a bittersweet experience for survivors and their parents. Survivors and their parents experienced change that included living with uncertainty, intensification of the parenting role, a changing social world, a different way of being, and the need for additional help. CONCLUSION: Results from this synthesis reinforce that surviving a childhood brain tumor should be viewed as a point on a continuum of living with a brain tumor. Psychosocial effects of surviving brain cancer affect the entire family unit. A need for psychosocial support is evident, although development of such supports necessitates a more full understanding of challenges face by the child affected, their parents, and siblings. The limitations noted in this synthesis reinforce that more qualitative research is needed in this subject area.
PURPOSE: The multiple late-effects experienced by survivors of childhood brain tumors, are not only a source of great distress for survivors, but also for their parents and siblings. The aim of this review is to systematically identify and synthesize qualitative evidence on how survivors of childhood brain tumors and their parents experience life after surviving childhood brain tumors. METHODS: Based on literature search in seven databases, 10 qualitative studies, published between 2004 and 2014 were included. RESULTS: Surviving a childhood brain tumor was experienced as paradox for survivors and their parents. While parents and survivors celebrated making it through the cancer experience, they nonetheless encountered a world with loss and new challenges. In short, the experience of survival was a bittersweet experience for survivors and their parents. Survivors and their parents experienced change that included living with uncertainty, intensification of the parenting role, a changing social world, a different way of being, and the need for additional help. CONCLUSION: Results from this synthesis reinforce that surviving a childhood brain tumor should be viewed as a point on a continuum of living with a brain tumor. Psychosocial effects of surviving brain cancer affect the entire family unit. A need for psychosocial support is evident, although development of such supports necessitates a more full understanding of challenges face by the child affected, their parents, and siblings. The limitations noted in this synthesis reinforce that more qualitative research is needed in this subject area.
Authors: Katja Weiss; Arne Simon; Norbert Graf; Jakob Schöpe; Joachim Oertel; Stefan Linsler Journal: Childs Nerv Syst Date: 2016-11-07 Impact factor: 1.475
Authors: David K Buchbinder; Michelle A Fortier; Kathryn Osann; Justin Wilford; Violet Shen; Lilibeth Torno; Leonard S Sender; Susan K Parsons; Lari Wenzel Journal: J Pediatr Hematol Oncol Date: 2017-11 Impact factor: 1.289
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
Authors: Kim Mooney-Doyle; Janet A Deatrick; Connie M Ulrich; Salimah H Meghani; Chris Feudtner Journal: J Palliat Med Date: 2017-10-03 Impact factor: 2.947