“A Really Really Almost Impossible Journey” Perceived Needs and Challenges of Families Impacted by Pediatric Cancer: A Qualitative Analysis

Abstract

ABSTRACT Caring for a child with cancer can place a number of burdens on families, however it is unclear the extent to which health-care professionals (HCPs) and other personnel supporting families are aware of these burdens. This study sought to explore the needs and challenges encountered by families impacted by pediatric cancer in Ireland from the perspectives of both parents and the personnel who support them. Twenty-one participants, comprising seven parents (one male, six females), and 14 supportive personnel (nine hospital-based volunteers and five HCPs) took part in in-depth semi-structured interviews via Microsoft Teams (December 2020 to April 2021) to obtain a perspective of the needs, challenges, and currently available support for families. A reflexive thematic approach to analysis was employed. The need to navigate a new normal, a sense of riding the wave and reliance on others were perceived to be the primary challenges encountered by families. Participants reported a need for community service provision, connectivity across the health-care system and more accessible psychological support. High levels of overlap across themes were found for parents and supportive personnel, particularly HCPs. Results highlight the significant challenges encountered by families impacted by pediatric cancer. Themes voiced by parents were frequently echoed by HCPs, suggesting this group is attuned to broader family needs. As such, they may be capable of providing insight where parent perspectives are unavailable. While further analysis including children’s voices is needed, findings highlight key areas toward which support for families should be directed.