Background: Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution of support groups.Aims: To ascertain the need for a pediatric caregiver support group based on a survey that explored the unmet needs of caregivers of children with cancer.Methods: Caregivers of pediatric patients (n = 17) undergoing treatment at the hospital were requested to complete our Pediatric Caregiver Psycho-social Needs Survey. The survey encompassed questions on different aspects of caregiving and the caveats felt by the caregivers. The needs were categorized into seven main domains (physical, emotional, family-related issues, spiritual, social, logistics, and information) that focused on understanding the importance and the perceived level of professional support that was expected. The data was analyzed using SPSS.Results: The most often reported needs were (i) emotional concerns with the majority reporting fear (58.8%), (ii) logistics-related needs for play/art-based activities (58.8%), (iii) informational needs focusing on understanding diagnosis/ prognosis (47.1%), side-effects of treatment and physical changes (41.2%).Family-related needs escalated when caregivers (23.5%) looked after other ill family members at home. Caregivers (23.5%) also reported Spiritual concerns suggesting the need for religious/spiritual support in the hospital. Majority of caregivers (82.4%) expressed interest to be part of a pediatric caregiver support group. However, professional support sought for was much lesser compared to the percentage of needs/concerns expressed.
Conclusion:Our study highlighted the unmet needs of caregivers which included emotional, logistics-related needs, and concerns about information. Hence, the goal is to provide a unified platform through a support group that holistically can address needs and empower caregivers.