Transition from pediatric to adult aftercare for survivors of pediatric cancer in Newfoundland and Labrador: a qualitative study.
Adolescent
Aftercare
/ methods
Cancer Survivors
/ psychology
Child
Child Health Services
/ standards
Female
Health Services Accessibility
/ standards
Health Services Needs and Demand
Humans
Male
Neoplasms
/ epidemiology
Newfoundland and Labrador
/ epidemiology
Psychosocial Support Systems
Qualitative Research
Quality Improvement
Reference Standards
Rural Health
/ standards
Transition to Adult Care
/ organization & administration
Transitional Care
/ standards
Journal
CMAJ open
ISSN: 2291-0026
Titre abrégé: CMAJ Open
Pays: Canada
ID NLM: 101620603
Informations de publication
Date de publication:
Historique:
entrez:
2
4
2021
pubmed:
3
4
2021
medline:
6
8
2021
Statut:
epublish
Résumé
Childhood cancer survivors (CCSs) face increased risks during the period when they leave pediatric care and transition into adult-focused aftercare. We examined the experiences of CCSs entering adult-focused aftercare to gain a better understanding of current transition practices and barriers to transition, and to identify opportunities for improving care. We conducted a qualitative study using in-person and telephone semi-structured interviews. Childhood cancer survivors who recently transitioned out of pediatric care and health care providers (HCPs) who provide care for CCSs in Newfoundland and Labrador were identified using purposive sampling. Participants were interviewed between July 2017 and March 2019. Data were analyzed using both qualitative descriptive and thematic analysis. We conducted interviews with 5 CCSs and 9 HCPs. All CCSs interviewed reported receiving aftercare through their pediatric oncology program; only 2 reported receiving any form of aftercare in the adult setting. The lack of a structured transition process for CCSs in the province emerged as a theme in this study. Interview participants identified several barriers to transition: the added challenges for survivors in rural areas, changes in the availability of services after the transition to adult-focused aftercare, challenges associated with navigating the adult system, and a lack of education on transitioning into adult aftercare. We found that there was little preparation for the transition of CCSs into adult care, and their aftercare was disrupted. Programs serving CCSs have opportunities to improve care by standardizing and better supporting these transitions, for example through the development of context-appropriate educational resources.
Sections du résumé
BACKGROUND
Childhood cancer survivors (CCSs) face increased risks during the period when they leave pediatric care and transition into adult-focused aftercare. We examined the experiences of CCSs entering adult-focused aftercare to gain a better understanding of current transition practices and barriers to transition, and to identify opportunities for improving care.
METHODS
We conducted a qualitative study using in-person and telephone semi-structured interviews. Childhood cancer survivors who recently transitioned out of pediatric care and health care providers (HCPs) who provide care for CCSs in Newfoundland and Labrador were identified using purposive sampling. Participants were interviewed between July 2017 and March 2019. Data were analyzed using both qualitative descriptive and thematic analysis.
RESULTS
We conducted interviews with 5 CCSs and 9 HCPs. All CCSs interviewed reported receiving aftercare through their pediatric oncology program; only 2 reported receiving any form of aftercare in the adult setting. The lack of a structured transition process for CCSs in the province emerged as a theme in this study. Interview participants identified several barriers to transition: the added challenges for survivors in rural areas, changes in the availability of services after the transition to adult-focused aftercare, challenges associated with navigating the adult system, and a lack of education on transitioning into adult aftercare.
INTERPRETATION
We found that there was little preparation for the transition of CCSs into adult care, and their aftercare was disrupted. Programs serving CCSs have opportunities to improve care by standardizing and better supporting these transitions, for example through the development of context-appropriate educational resources.
Identifiants
pubmed: 33795220
pii: 9/2/E309
doi: 10.9778/cmajo.20200134
pmc: PMC8034256
doi:
Types de publication
Journal Article
Research Support, U.S. Gov't, Non-P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Pagination
E309-E316Informations de copyright
© 2021 Joule Inc. or its licensors.
Déclaration de conflit d'intérêts
Competing interests: None declared.
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