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"It's My Job to Love Him": Parenting Adolescents and Young Adults With Advanced Cancer.
Bogetz, Jori F; Trowbridge, Amy; Kingsley, Jenny; Taylor, Mallory; Rosenberg, Abby R; Barton, Krysta S.
Afiliação
  • Bogetz JF; Seattle Children's Hospital, Seattle, Washington; jori.bogetz@seattlechildrens.org.
  • Trowbridge A; School of Medicine, University of Washington, Seattle, Washington.
  • Kingsley J; Palliative Care and Resilience Laboratory, Seattle Children's Research Institute, Seattle, Washington; and.
  • Taylor M; Seattle Children's Hospital, Seattle, Washington.
  • Rosenberg AR; School of Medicine, University of Washington, Seattle, Washington.
  • Barton KS; Palliative Care and Resilience Laboratory, Seattle Children's Research Institute, Seattle, Washington; and.
Pediatrics ; 146(6)2020 12.
Article em En | MEDLINE | ID: mdl-33234665
ABSTRACT

BACKGROUND:

Parents of adolescents and young adults (AYAs) with serious illness experience enormous stress as they navigate their child's illness. In this study, we aimed to elucidate AYA parental perspectives on the advanced cancer experience, including what parents find challenging and their sources of strength.

METHODS:

Parents of AYAs aged 14 to 24 years old being treated for recurrent or refractory advanced cancer at a large academic center completed demographic surveys and 11 semi-structured interviews between December 2017 and July 2018. Conventional content analysis was used by 2 coders to analyze transcriptions, with a third reviewer adjudicating. Thematic networks analysis was then used to extrapolate basic and organizing themes.

RESULTS:

A total of 22 parents participated. The majority were female, non-Hispanic, and married; 23% (n = 5) were from racial minority groups. We identified 3 organizing themes related to navigating parents' experiences (1) what we do to love our child, (2) what challenges us, and (3) how we keep our heart focused on what matters most. Despite substantial uncertainty about their child's future, parents endorsed growth and gratitude as they focused on the ways they showed love for their child during this difficult time.

CONCLUSIONS:

Parents of AYAs with advanced cancer experience many parenting challenges, elucidating some of the vulnerabilities and magnifying the sources of strength among parents of children transitioning to adulthood during serious illness. This research has important implications for how we build programs that support and sustain parents' well-being during their child's serious illness.
Assuntos

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Relações Pais-Filho / Pais / Poder Familiar / Neoplasias Idioma: En Ano de publicação: 2020 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Relações Pais-Filho / Pais / Poder Familiar / Neoplasias Idioma: En Ano de publicação: 2020 Tipo de documento: Article