“Well, how many times can I ask for it?” Parent perspectives of social needs support during childhood cancer care

Key Message : Parents of children with advanced cancer report insufficient support for unmet social needs with barriers to resource support including a "hidden curriculum", burdensome application processes, and long processing periods. They desire proactive, systematic, and flexible support accessing resources that reduces parental burden and eliminates the "hidden curriculum".

Abstract:

Background: Nearly half of children with advanced cancer experience unmet social needs – including food, housing, transportation, or utility insecurity – which are associated with worse child quality-of-life and greater parental distress. No systematically evaluated social needs interventions exist in pediatric advanced cancer even as families face heightened financial toxicity. We sought to generate foundational knowledge of parental perspectives and priorities for social needs interventions.

Methods: An exploratory qualitative study focused on parents of children < 18 years with advanced cancer (relapse, progression, early phase trial enrollment, poor prognosis cancer, or new palliative care consult) at two pediatric cancer centers in Boston, MA and Dallas, TX, purposively sampled based on unmet social needs and language preference. Semi-structured interviews were conducted in English or Spanish. Interviews were audio-recorded, translated (where applicable), and transcribed. Comprehensive qualitative thematic analysis included a multistage iterative approach with both prefigured and emergent dimensions focused on social needs interventions.

Results: Of 17 participants, 14 completed interviews in English and 3 in Spanish; 15 were mothers and 16 were positive for unmet social needs. Despite social work involvement, parents report insufficient support for unmet social needs. Barriers to accessing resources included (i) a “hidden curriculum” (lack of clarity of resource availability, timing, and eligibility), (ii) burdensome application processes, and (iii) long processing periods. Parent intervention priorities included proactive assistance initiated early, transparency regarding available support, and flexibility in eligibility, needs addressed, and delivery. Parents expressed high enthusiasm for existing intervention models with a preference for hands-on support accessing and applying for resources; there were minimal concerns regarding sharing financial information.

Conclusion: Future social needs interventions for pediatric advanced cancer should prioritize proactive, systematic, and flexible support accessing resources that reduces parental burden and eliminates the “hidden curriculum”. Next steps include development of an intervention prototype incorporating parent-derived priorities.

References: Umaretiya PJ, Koch VB, Flamand Y, et al. Disparities in parental distress in a multicenter clinical trial for pediatric acute lymphoblastic leukemia. J Natl Cancer Inst. 2023;115(10):1179-1187. doi:10.1093/jnci/djad099

Eche-Ugwu IJ, Orellana L, Becker D, et al. Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial. Cancer. 2024;130(20):3540-3548. doi:10.1002/cncr.35432

Bona K, Dussel V, Orellana L, et al. Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage. 2014;47(3):594-603. doi:10.1016/j.jpainsymman.2013.04.003