Card image cap
Card image cap

Caring for a child with cancer: a multifaceted experience for families living far from specialized centres

Chantale Simard

Research framework: Cancer is the most common life-threatening disease in Canadian children. It is a traumatic family experience. Authors point out that affected families are more vulnerable if they do not have sufficient resources to support their resilience process. Families living in communities far from hospital centres specialized in pediatric oncology (HCSPO) face additional challenges because of limited access to resources and services that can meet their immediate needs. While the family experience of pediatric cancer is well documented in the scientific literature, the experience of being far from an HCSPO remains under explored. Gottlieb’s strengths-based approach to care and Walsh’s (2012 ; 2016b) family resilience building theory guided this study. This article presents findings from the first phase of a larger study, conducted between 2015 and 2021, those related to different contexts that may exacerbate family vulnerability.

Objective: Exploring factors related to the resilience process of families accompanying a child with cancer in a remote context (FACCRC).

Methodology: A descriptive qualitative approach was adopted by using 26 semi-structured individual and group interviews (n = 50 people: 39 members of 11 families, 11 nurses).

Results: Among the results obtained in the larger study, two main contexts of remoteness were identified and are presented here: (1) when the FACCRC are in their community, at the time of the child’s diagnosis, on their returns from the HCSPO and on a daily basis, and (2) when they are at the HCSPO, far from their loved ones and their usual landmarks. Contexts with specific risk factors that can compromise their resilience process.

Findings: Remoteness is a multi-contextual, persistent experience that affects all family members. It requires a specific family assessment, and is facilitated by better communication and collaboration between the specialized and regional hospital centres.

Contribution: The proposal of valuable leads for care more adapted to the reality of FACCRC.