Jori Bogetz1, Amy Trowbridge2, Jenny Kingsley3, Mallory Taylor4, Lori Wiener5, Abby R Rosenberg6, Krysta S Barton7. 1. Division of Bioethics and Palliative Care, Department of Pediatrics (J.B.), University of Washington School of Medicine; Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington. Electronic address: jori.bogetz@seattlechildrens.org. 2. Divisions of Bioethics and Palliative Care/Hospital Medicine, Department of Pediatrics (A.T.), University of Washington School of Medicine; Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington. 3. Division of Critical Care Medicine, Department of Anesthesiology and Critical Care Medicine (J.K.), Keck School of Medicine at the University of Southern California; Los Angeles, California. 4. Division of Hematology/Oncology, Department of Pediatrics (M.T.), University of Washington School of Medicine; Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington. 5. Behavioral Health Core and Director (L.W.), Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland. 6. Division of Hematology/Oncology, Department of Pediatrics (A.R.R.), University of Washington School of Medicine; Director, Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington. 7. Palliative Care and Resilience Lab (K.S.B.), Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington.
Abstract
CONTEXT: With advances in treatments that have resulted in children living longer with serious illness, it is essential to understand how parents adapt to changes during the final stages of their child's life or after their child's death. OBJECTIVE: To examine the process by which parents adapt to their child's serious illness and death among a group of non-bereaved and bereaved parents of adolescents and young adults (AYAs) with advanced cancer. METHODS: Qualitative study exploring the experiences of parents of AYAs who were being treated for recurrent or refractory advanced cancer (nonbereaved parents) or had died from their disease (bereaved parents) at one large academic center. Participants completed demographic surveys and semi-structured interviews to better understand parent adaptation. Data were analyzed using content and thematic approaches. RESULTS: Of the 37 participating parents; 22 (59%) were non-bereaved and 15 (41%) were bereaved. The AYAs predominantly had hematologic malignancies (n = 18/34, 53%). Across both cohorts, parents described the process of adapting to their child's worsening health or death as moments of feeling stuck and moments of gratitude and meaning. CONCLUSION: Adaptation to a child's serious illness and death likely occurs on a dynamic spectrum and parents may oscillate both cognitively and emotionally. This has important implications for how clinicians and communities support parents. Greater comfort with and normalization of the adaptation process may enable parents to more openly share both the unimaginable hardships and unexpected silver-linings that are part of their parenting experiences during their child's illness and death. Published by Elsevier Inc.
CONTEXT: With advances in treatments that have resulted in children living longer with serious illness, it is essential to understand how parents adapt to changes during the final stages of their child's life or after their child's death. OBJECTIVE: To examine the process by which parents adapt to their child's serious illness and death among a group of non-bereaved and bereaved parents of adolescents and young adults (AYAs) with advanced cancer. METHODS: Qualitative study exploring the experiences of parents of AYAs who were being treated for recurrent or refractory advanced cancer (nonbereaved parents) or had died from their disease (bereaved parents) at one large academic center. Participants completed demographic surveys and semi-structured interviews to better understand parent adaptation. Data were analyzed using content and thematic approaches. RESULTS: Of the 37 participating parents; 22 (59%) were non-bereaved and 15 (41%) were bereaved. The AYAs predominantly had hematologic malignancies (n = 18/34, 53%). Across both cohorts, parents described the process of adapting to their child's worsening health or death as moments of feeling stuck and moments of gratitude and meaning. CONCLUSION: Adaptation to a child's serious illness and death likely occurs on a dynamic spectrum and parents may oscillate both cognitively and emotionally. This has important implications for how clinicians and communities support parents. Greater comfort with and normalization of the adaptation process may enable parents to more openly share both the unimaginable hardships and unexpected silver-linings that are part of their parenting experiences during their child's illness and death. Published by Elsevier Inc.
Entities:
Keywords:
Parents; adolescents and young adults; cancer; grief and bereavement; pediatric
Authors: Wendy G Lichtenthal; Kailey E Roberts; Corinne Catarozoli; Elizabeth Schofield; Jason M Holland; Justin J Fogarty; Taylor C Coats; Lamia P Barakat; Justin N Baker; Tara M Brinkman; Robert A Neimeyer; Holly G Prigerson; Talia Zaider; William Breitbart; Lori Wiener Journal: Palliat Med Date: 2020-02-05 Impact factor: 4.762
Authors: Barbara Jones; Jennifer Currin-Mcculloch; Wendy Pelletier; Vicki Sardi-Brown; Peter Brown; Lori Wiener Journal: Soc Work Health Care Date: 2018-04
Authors: Angela Steineck; Lori Wiener; Jennifer W Mack; Nirali N Shah; Corinne Summers; Abby R Rosenberg Journal: Pediatr Blood Cancer Date: 2020-03-11 Impact factor: 3.167
Authors: Shannon L Maude; Theodore W Laetsch; Jochen Buechner; Susana Rives; Michael Boyer; Henrique Bittencourt; Peter Bader; Michael R Verneris; Heather E Stefanski; Gary D Myers; Muna Qayed; Barbara De Moerloose; Hidefumi Hiramatsu; Krysta Schlis; Kara L Davis; Paul L Martin; Eneida R Nemecek; Gregory A Yanik; Christina Peters; Andre Baruchel; Nicolas Boissel; Francoise Mechinaud; Adriana Balduzzi; Joerg Krueger; Carl H June; Bruce L Levine; Patricia Wood; Tetiana Taran; Mimi Leung; Karen T Mueller; Yiyun Zhang; Kapildeb Sen; David Lebwohl; Michael A Pulsipher; Stephan A Grupp Journal: N Engl J Med Date: 2018-02-01 Impact factor: 91.245