Unmet Needs of Palliative Care Among Iranian Children with Cancer and Their Families: A Qualitative Study

Abstract

Background: Palliative care is one of the primary rights of children with cancer and their families. Identifying the unmet needs of palliative care for these children is important in providing high-quality care. Objectives: The present study aimed at explaining the perception of formal and informal caregivers about the unmet palliative care needs of children with cancer and their families. Methods: This qualitative study was conducted from October 1, 2020, to May 15, 2021, in one of the children’s hospitals in Rasht (Northern Iran). This study enrolled 25 caregivers (nurses, doctors, grandmothers, sisters, aunts, neighbors, and parents of children with cancer) and 5 children with cancer, who met the inclusion criteria by purposeful sampling to participate in in-depth and semi-structured interviews. The interviews continued until data saturation. A directed content analysis was performed according to the Elo and Kyngas proposed approach and based on the National Consensus Project (NCP) framework. The findings were managed by MAXQDA2020 software. Guba and Lincoln criteria were used to ensure the trustworthiness of the data. Results: The average age of the participants was 32.40 ± 1.4 years, and 1,450 codes were extracted. The extracted theme was “the need for holistic care”, which included 7 main categories such as “the structure and process of care”, “physical aspects of care”, “psychological aspects of care”, “social aspects of care”, “cultural aspects of care”, “care of the patient nearing the end of life”, and “spiritual, religious, and existential aspects of care”, and 23 subcategories. Conclusions: Children with cancer and their families have many physical, psychological, spiritual, and social needs. To meet these needs, it is suggested to provide the necessary infrastructure for palliative care, strive for justice in access to palliative care services for children with cancer and their families, empower caregivers, form an interdisciplinary team, and promote cultural awareness regarding cancer and end-of-life care.