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

Authors

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

Document Type

Article

Department

Paediatrics and Child Health

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 (pConclusions: 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.

Comments

Pagination are not provided by the author/publisher.

Publication (Name of Journal)

BMJ Open

DOI

10.1136/bmjopen-2023-083088

Recommended Citation

Saeed, S., Rasool Malik, M. G., Khan, M. H., Malik, S. R., Aziz, B. (2024). 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. BMJ Open, 14(5), e083088.
Available at: https://ecommons.aku.edu/pakistan_fhs_mc_women_childhealth_paediatr/1513