Unmet supportive care needs of family caregivers of children with cancer in India

J Pediatr Nurs. 2025 Nov 7;86:44-50. doi: 10.1016/j.pedn.2025.10.029. Online ahead of print.

ABSTRACT

BACKGROUND: Caring for a child with cancer is a profoundly challenging experience and caregivers often face unmet support needs, which may vary based on demographic factors. This study assessed: 1) the unmet needs of caregivers of children with cancer in India, and 2) how caregivers’ unmet needs were related to demographic factors.

METHODS: Using a cross-sectional design and purposive sampling (for the patient’s condition and duration of care), family caregivers of paediatric cancer patients (n = 135) in Hyderabad, India were surveyed using the Cancer Needs Questionnaire-Parents and Carers (CNQ-PC) to assess unmet needs. We examined the data using descriptive statistics (frequency reporting ‘high’ or ‘very high’ needs), t-tests and Chi-squares.

RESULTS: Six of the top ten unmet needs related to caregivers’ ‘feelings’: including coping with seeing the young person in pain (89 %), and feeling guilty for neglecting others (73 %), sad/depressed (56 %), anxious/nervous (55 %), scared (53 %), and confused (44 %). Families who lived further away from (versus closer to) the treating hospital were more likely to report unmet needs, including managing to pay for the young person’s nonmedical items (t(133) = -2.77, p = .006) and knowing how to support the young person (t(133) = -2.96, p = .004). Parent income and parent education were also related to unmet needs.

DISCUSSION: Caregivers of children with cancer in India face significant unmet psychosocial needs, especially those from lower socioeconomic backgrounds and those travelling long distances for treatment. Enhancing supportive care services, particularly for emotionally distressed caregivers and families facing geographic and financial barriers, is crucial.

PMID:41205248 | DOI:10.1016/j.pedn.2025.10.029