Care for the caregiver: An exploration of caregiver burden of children with chronic medical conditions at a tertiary care hospital in Karachi, Pakistan - A mixed-methods study

Sana Saeed, Marib Ghulam Rasool Malik, Maryam Hameed Khan, Shahzil Abdur Rehman Malik, Bisma Aziz

Research output: Contribution to journalArticlepeer-review

Abstract

Objectives Caregiver burden often goes unrecognised and can substantially affect caregivers' physical, psychological and financial well-being, thereby impacting quality of care. This study investigates burden among caregivers of children with chronic medical conditions in a tertiary care hospital in Pakistan. The study aims to assess the extent of burden, explore influencing factors and recommendations for interventions. Design Mixed-methods study, comprising of an in-person paper-based survey, employing the Zarit Burden Interview scale to assess burden scores. Qualitative component included thematic analysis of semi-structured in-depth interviews with caregivers. Participants 383 caregivers of children admitted to the inpatient paediatric services at our tertiary care centre were surveyed. In-depth interviews were conducted with 19 caregivers. Results The survey revealed a mean burden score of 35.35±15.14, with nearly half of the participants (46%, n=177) experiencing mild burden, while 37% (n=140) reporting moderate-to-severe burden. The most common diagnosis was cancer (24%, n=92), while the highest burden (42.97±15.47) was noted for congenital cardiac disease. Greater burden was significantly associated with lower caregiver education, young age of the child at diagnosis and increased number of hospital visits (p<0.05). Caregivers highlighted financial strain, psychosocial effects and impact on lifestyle and relationships as key challenges. They emphasised the need for improved medical coordination, financial support and enhanced hospital services. Conclusions The study elucidates the multifaceted nature of caregiver burden in the context of paediatric chronic illnesses in Pakistan. Interventions should emphasise financial aid, educational support and development of system-level changes to improve access to resources and medical care coordination. These insights call for policy and practice integration to support caregivers effectively.

Original languageEnglish
Article numbere083088
JournalBMJ Open
Volume14
Issue number5
DOIs
Publication statusPublished - 22 May 2024

Keywords

  • adolescent
  • chronic disease
  • fatigue
  • paediatric palliative care
  • quality of life
  • stress, psychological

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