What are the typical practical support programmes of a childhood cancer foundation?

How do you decide what programmes to offer?

Start with direct parent engagement (not assumptions)

Have structured but compassionate conversations with parents currently going through treatment and those who have completed it. Schedule short 20–30-minute interviews. Have small focus group discussions at the hospital, clinic or where families reside. Anonymous surveys for more sensitive topics could guide you to understand the parents’ needs - especially if you hear recurring themes like transport, food, accommodation, emotional support, sibling care, income loss, etc

Ask questions like:

- “What has been the hardest part of your journey outside of medical care?” 

- “What support did you wish you had in the first month?” 

- “What costs or daily challenges surprised you?” 

- “What helped you most—and what didn’t?” 

Map the patient journey

Break the experience into phases from diagnosis, active treatment phase (inpatient and outpatient), discharge or transition to home and survivorship or palliative care. 

At each stage, identify the practical needs (transport, housing, food), the emotional 

and existential needs (anxiety, isolation, grief)  and the informational or practical needs (understanding treatment, side effects).

The needs of the patients and families change dramatically between these phases—do not treat them as one group.

Speak to healthcare professionals

You will gain a wealth of knowledge when you engage with the paediatric oncologists, nurses, social workers, psychologists, or volunteers. They see patterns across many families and can help you identify gaps in current support systems, high-risk families (rural, low-income, single caregivers) and where parents typically “fall through the cracks.”

Review existing evidence (do not reinvent everything)

There’s strong global research in paediatric oncology and psychosocial support showing that families commonly struggle with financial toxicity (loss of income and  increased costs), travel burden (especially in low- and middle-income settings and where interhospital transport support is declining or does not exist), emotional distress, caregiver burnout and treatment adherence challenges linked to logistics. You can use this information to guide your questions keeping in mind your country’s challenges.

Do a simple needs assessment survey

Keep it short and accessible (many parents are overwhelmed). Include demographics (distance from hospital, employment status), top five challenges and allow families to rank the type of support needed. Use tick-box and open-ended questions. Determine what would be the preferred and practical support format, for example cash versus vouchers, counselling, accommodation, the use of apps or a blended version and ensure that the survey is available in local languages.

Observe real-life environments

To fully understand the needs of the patient and family, you need to spend time in the hospital waiting areas, the wards and if available, the accommodation facilities. You will notice things parents may not articulate such as long waiting times with no food access, lack of safe sleeping spaces, children refusing food due to treatment side effects or parents managing complex medication schedules alone. 

Segment your parents (not all needs are equal)

Avoid a “one-size-fits-all” programme. Take into consideration distances families need to travel, for example urban versus rural areas, the socio-economic status of the different families, the type of cancer and where the child is in the treatment phase, for example: active treatment, relapse, maintenance, or survivorship. This information will help you to design targeted interventions instead of generic ones.

Validate before you build programmes

Before launching services, you need to test your ideas with parents. Your dream might not be their need. You need to determine whether your programme will help them. Pilot small interventions and adjust your programme based on their feedback. Many organisations skip this and end up wasting resources.

Prioritise needs 

Once you gather data, rank needs by urgency (what affects treatment adherence or survival?), frequency (how many families experience it?) and impact (does solving it meaningfully reduce stress or cost?). In many settings, the first priorities are transport support, accommodation near treatment centres, nutrition (food security), and psychosocial and emotional support. 

Build feedback into your foundation from day one

Create simple ways for parents to keep telling you as needs evolve through WhatsApp check-ins, feedback forms, and parent advisory groups.

References

- L.B . Kleinlugtenbelt, et.al. Dec. 2025. Continuity and quality of community care for children with cancer: A qualitative study on the experiences and needs of parents and adolescents. Eksevier. https://www.sciencedirect.com/science/article/pii/S2772610X25002107

- Liesa J. Weiler-Wichtl, et.al. March 2024. Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research. A workshop report. ResearchGate. https://www.researchgate.net/publication/380724843_Asking_those_who_know_their_needs_best_A_framework_for_active_engagement_and_involvement_of_childhood_cancer_survivors_and_parents_in_the_process_of_psychosocial_research-A_workshop_report/link/664b6116bc86444c72ef1f60/download?_tp=eyJjb250ZXh0Ijp7ImZpcnN0UGFnZSI6InB1YmxpY2F0aW9uIiwicGFnZSI6InB1YmxpY2F0aW9uIn19

- Elham Koohkan, et.al. 2019. Health information needs of families at childhood cancer: A qualitative study. Journal of Education and Health Promotion. https://pmc.ncbi.nlm.nih.gov/articles/PMC6967112/

- Lynn B. Edwards, et.al. 2017. A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions. SA Journal of Oncology. file:///C:/Users/Admin/Downloads/14-206-1-PB.pdf

- Blanca Bretones Nieto, et.al. 2022. Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective. https://www.researchgate.net/publication/366259414_Needs_Assessment_in_Parents_of_Children_Affected_by_Cancer_A_Qualitative_Perspective

- Lori Wiener, et.al. 2019. Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue. Pub Med. https://pmc.ncbi.nlm.nih.gov/articles/PMC6397048/