Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors
A Meta-Ethnographic Exploration
Bibliographic Data
| ID | 4688781 |
|---|---|
| Authors | Emma Beecham (0000-0002-1832-0286, Louis Dundas Centre for Children’s Palliative Care, UCL-Institute of Child Health, London, UK), Richard Langner (0000-0002-3237-001X, Louis Dundas Centre for Children’s Palliative Care, UCL-Institute of Child Health, London, UK), Darren Hargrave (0000-0001-8219-9807, Paediatric Oncology Unit, Great Ormond Street Hospital, London, UK), Myra Bluebond‐langner (0000-0001-9281-5431, Rutgers, the State University of New Jersey, corresponding author), Myra Bluebond-Langner (Louis Dundas Centre for Children’s Palliative Care, UCL-Institute of Child Health, London, UK) |
| Year | 2019 |
| Volume | 29 |
| Issue | 1 |
| Pages | 55-68 |
| Publication date | 2019-01-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/1049732318786484 |
| PMID | 30043679 |
| OpenAlex | W2884168430 |
| Language | EN |
| References cited | 32 |
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
Conceptualization · Developmental psychology · Ethnography · Linguistics · Meta-analysis · Pathology · Psychotherapist · Sociology · Anthropology · Childhood Cancer Survivors' Quality of Life · Family and Disability Support Research · Family Support in Illness · Medicine · Philosophy · Psychology
Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups
Prenatal Care Use Among Women of Low Income
Meta-Ethnography
Normalization in Families Raising a Child Who Is Medically Fragile/Technology Dependent and Developmentally Delayed
Developing a descriptive system for a new preference-based measure of health-related quality of life for children
Quality of life as conveyed by pediatric patients with cancer
Using thematic analysis in psychology
Getting Used to It
Parents' Perspectives of Changes Within the Family Functioning After a Pediatric Cancer Diagnosis
Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial
| Citation velocity | historical |
|---|---|
| Highly cited | No |