Exploring challenges and opportunities in paediatric bereavement care: a qualitative study from a tertiary care hospital in Pakistan

探索儿童丧亲关怀中的挑战与机遇:一项来自巴基斯坦三级医院的定性研究

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Abstract

BACKGROUND: In Pakistan, most children with life-threatening illnesses present at advanced stages and succumb to death, leaving families emotionally traumatised. Parental bereavement leads to long-term psychosocial and financial hardships for families, thus highlighting the need for bereavement care as a crucial part of paediatric palliative care. This study explores key challenges around lack of bereavement care in the healthcare infrastructure in Pakistan and identifies opportunities to establish this programme for grieving families. METHODOLOGY: This study presents a secondary qualitative analysis derived from a larger parent study exploring parental experiences following the death of a child. Participants included bereaved parents 2–5 years after their child’s death from oncologic or non-oncologic illnesses at Aga Khan University Hospital, Karachi. A qualitative, phenomenological design was implemented, with semi-structured interviews. Data collection continued until thematic saturation was achieved. Thematic analysis was conducted using DeDoose software. RESULTS: Nineteen bereaved parents were interviewed, including parents of children with oncological (n = 10) and non-oncological (n = 9) diseases. No clear thematic differences were observed between parents of children with oncologic and non-oncologic conditions. Parents described gaps in communication with healthcare teams, particularly in receiving emotional support, which led to feelings of isolation. Many faced barriers to accessing psychological care, including limited awareness, cultural stigma, and financial constraints. Parents expressed concerns about siblings struggling silently with grief, highlighting the need for bereavement resources and professional psychological support for them as well. Cultural norms around grief expression were also seen as a challenge, hindering emotional processing, and delaying healing within families. Parents also identified a lack of institutional bereavement care practices, such as a condolence message or note and any educational materials. CONCLUSION: Bereavement care in Pakistan remains underexplored in the literature. This highlights critical gaps and provides context-specific recommendations for establishing bereavement services based on parental recommendations. Key opportunities for improvement include institutional initiatives for structured bereavement care and addressing societal taboos around grief expression. These changes can foster an environment where bereaved families receive the support they need. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-026-02054-8.

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