“It was time I could have spent better”—the barriers, enablers, and recommendations for improving access to financial aid when a child has cancer

Abstract

Purpose

A child’s cancer diagnosis imposes both short-term and long-term stress on families. This study aimed to explore (1) the barriers and enablers in alleviating the financial impacts of a child’s cancer diagnosis and treatment, and (2) areas for improvement in financial aid as suggested by stakeholders.

Method

This qualitative study utilised semi-structured interviews with five hospital social work team members, three charity representatives and eight parents of children treated for cancer. The interviews, which were conducted between April 2023 and January 2024, were analysed using content analysis with a deductive-inductive approach supported by Nvivo Software.

Results

Barriers to mitigating financial impacts included administrative difficulties (e.g. paperwork complexities, strict eligibility criteria and limited support), psychosocial factors (e.g. cognitive burden, social and societal factors), and navigational issues (e.g. poor communication, fragmented support systems). Enablers included streamlined administrative processes, assistance with navigating and applying for financial aid and community support for emotional refuge and respite. Suggested improvements included simplified application forms, offering automatic provision for certain financial aids upon diagnosis, providing infrastructure to support application processes, reallocating funds to increase navigator roles, providing tailored information through a centralised platform, and facilitating connections to parent support groups.

Implications for cancer survivors

The financial stress stemming from the uncertainty of a child’s cancer diagnosis can be overwhelming. Current support systems fall short in effectively mitigating this stress. This research provides empirical evidence for policy changes to enhance support for families, which is crucial to alleviate the multifaceted challenges they face.

Supplementary Information

The online version contains supplementary material available at 10.1007/s00520-025-09347-3.