Navigating the landscape of paediatric haematological malignancies: a qualitative exploration of caregivers' experiences and palliative care integration in Pakistan.

BACKGROUND

In Pakistan, over 10,000 children are diagnosed with cancer annually, with leukemia being the most common. These cases present challenges in symptom management, prognosis, and caregiver burden. Despite evidence supporting early integration, the use of palliative care (PC) in paediatric haematology-oncology remains inconsistent. There is a need for more evidence from underrepresented contexts where sociocultural factors strongly shape parental attitudes and needs. This study aims to explore the experiences of caregivers of children with haematological malignancies living in Pakistan. The study also seeks to identify the unmet needs of affected families, as perceived by caregivers, to inform strategies for improving palliative care delivery and support.

METHODS

This study employed a descriptive phenomenological design underpinned by an interpretivist paradigm. In-person, and telephone, semi-structured interviews were conducted at a private tertiary care hospital in Karachi, Pakistan. Purposive sampling was used to recruit 13 caregivers of 9 children (aged 0–18) with haematological malignancies. Families receiving treatment involving palliative care integration were included. Thematic analysis was performed via Dedoose software.

RESULTS

Nine interviews were conducted. Caregivers faced emotional distress, social isolation, and financial burden. These challenges reduce their ability to care for their child, their child’s siblings, and maintain personal wellbeing. While caregivers draw strength from their faith, there remains a need for structured psycho-socio-spiritual support. Specialised palliative care was perceived favourably for its holistic approach, enhanced communication between healthcare providers and caregivers, and ability to reframe hope.

CONCLUSION

This study highlights the need for early integration of comprehensive palliative care services to address caregivers' emotional, practical, and spiritual needs; improve communication; and enhance outcomes for both children and families.