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Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration.
Beecham, Emma; Langner, Richard; Hargrave, Darren; Bluebond-Langner, Myra.
Afiliação
  • Beecham E; 1 Louis Dundas Centre for Children's Palliative Care, UCL-Institute of Child Health, London, UK.
  • Langner R; 2 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
  • Hargrave D; 1 Louis Dundas Centre for Children's Palliative Care, UCL-Institute of Child Health, London, UK.
  • Bluebond-Langner M; 3 Paediatric Oncology Unit, Great Ormond Street Hospital, London, UK.
Qual Health Res ; 29(1): 55-68, 2019 01.
Article em En | MEDLINE | ID: mdl-30043679
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pais / Qualidade de Vida / Neoplasias Encefálicas / Pesquisa Qualitativa Tipo de estudo: Qualitative_research Aspecto: Patient_preference Limite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male Idioma: En Revista: Qual Health Res Ano de publicação: 2019 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pais / Qualidade de Vida / Neoplasias Encefálicas / Pesquisa Qualitativa Tipo de estudo: Qualitative_research Aspecto: Patient_preference Limite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male Idioma: En Revista: Qual Health Res Ano de publicação: 2019 Tipo de documento: Article