There's So Much More Support We Could Have Provided
Child Life Specialists' Stories of the Challenges Working in Adult Oncology
Bibliographic Data
| ID | 4634339 |
|---|---|
| Authors | Shipra Taneja (0000-0002-2623-8952, McMaster University), Meredith Vanstone (0000-0002-7347-6259, McMaster University), David L Lysecki (0000-0002-6059-0052, McMaster University), Heather Mckean (Hamilton Health Sciences, McMaster Children’s Hospital, Hamilton, ON, Canada), Daryl Bainbridge (0000-0002-0603-5728, McMaster University), Jonathan Sussman (0000-0002-7702-8816, McMaster University), Monica L Molinaro (0000-0002-5629-5974, McGill University Health Centre, corresponding author), Monica Molinaro (McMaster University) |
| Year | 2024 |
| Volume | 34 |
| Issue | 11 |
| Pages | 1084-1095 |
| Publication date | 2024-09-01 |
| 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 | 10.1177/10497323231215950 |
| PMID | 38035631 |
| OpenAlex | W4389209471 |
| Language | EN |
| References cited | 41 |
A cancer diagnosis in patients who are parents of minor children is uniquely stressful for both parents and children. Children need developmentally appropriate information and support to help reduce their fears and worries. Child life specialists (CLSs) are health professionals who work in pediatric environments to support children and families with the stress and uncertainty of illnesses. Increasingly, CLSs have been called upon to support children of patients in adult clinical environments. Our objective was to elucidate CLS caregiving narratives related to working with children of adult cancer patients. We used narrative inquiry to interview four CLSs working in adult oncology. Canadian CLSs who have experience providing care for children and families affected by parental cancer were recruited via convenience sampling. We used narrative analysis methods that included multiple close reads of the data, generating narrative themes, and noting conflicts or tensions in the data. CLSs' caregiving stories often highlighted the complexities of working in an adult oncology environment. Their narratives included challenges in providing optimal care to the children, including family-level barriers (such as parental wishes to withhold information from their children) and systemic barriers (such as late referrals and limited options for bereavement support). CLS participants identified several challenges of working with families in adult oncology. The CLSs highlighted a desire for additional institutional support for children of adult oncology patients and for themselves working in these environments in order to achieve what they believed to be optimal care
Cancer · Narrative · Narrative inquiry · Pediatric oncology · Childhood Cancer Survivors' Quality of Life · Family and Disability Support Research · Family Support in Illness · Medicine · Psychology · Internal Medicine
In the name of the family? Against parents’ refusal to disclose prognostic information to children
Prenatal Care Use Among Women of Low Income
The Life Story Approach
Narrative Research
Managing Strong Emotions
Adolescent bereavement following the death of a parent
Narrative and its potential contribution to disability studies
Stories of Experience and Narrative Inquiry
African American Parents' Experiences Navigating Breast Cancer While Caring for Their Children
Parental Cancer
Qualitative Quality
| Citation velocity | historical |
|---|---|
| Highly cited | No |