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March 21, 2026BMC Palliative Care0 citationsOpen Access

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

SSSameed ShariqASAreeba SultanSBSyed Ibrahim Bukhari

Key Points

  • This study aims to understand caregivers' experiences and identify their unmet needs related to palliative care for children with haematological malignancies in Pakistan.
  • Descriptive phenomenological design
  • In-person and telephone semi-structured interviews
  • Purposive sampling of 13 caregivers of 9 children
  • Thematic analysis using Dedoose software
  • Caregivers reported emotional distress, social isolation, and financial burden.
  • Palliative care was seen positively for enhancing communication and support.
  • A structured approach to psycho-socio-spiritual support is needed.

Abstract

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. 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. 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. 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.

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Cite This Study

Shariq et al. (2026) studied this question.

synapsesocial.com/papers/69be35386e48c4981c673557https://doi.org/10.1186/s12904-026-02060-w
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