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. 2024 May 22;14(5):e083088.
doi: 10.1136/bmjopen-2023-083088.

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  1 , Marib Ghulam Rasool Malik  2 , Maryam Hameed Khan  3 , Shahzil Abdur Rehman Malik  4 , Bisma Aziz  5
Affiliations

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 et al. BMJ Open. .

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.

Keywords: adolescent; chronic disease; fatigue; paediatric palliative care; quality of life; stress, psychological.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
Themes and subthemes emerging from the IDIs. IDIs, in-depth interviews.
See this image and copyright information in PMC

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References

    1. Loo YX, Yan S, Low LL. Caregiver burden and its prevalence, measurement scales, predictive factors and impact: a review with an Asian perspective. Singapore Med J 2022;63:593–603. 10.11622/smedj.2021033 - DOI - PMC - PubMed
    1. George LK, Gwyther LP. Caregiver well-being: a multidimensional examination of family Caregivers of demented adults. Gerontologist 1986;26:253–9. 10.1093/geront/26.3.253 - DOI - PubMed
    1. Lin RJ, Adelman RD, Diamond RR, et al. . The sentinel hospitalization and the role of palliative care. J Hosp Med 2014;9:320–3. 10.1002/jhm.2160 - DOI - PMC - PubMed
    1. Donelan K, Hill CA, Hoffman C, et al. . Challenged to care: informal Caregivers in A changing health system. Health Affairs 2002;21:222–31. 10.1377/hlthaff.21.4.222 - DOI - PubMed
    1. World Health Organization . n.d. Noncommunicable diseases. Available: https://www.who.int/westernpacific/health-topics/noncommunicable-disease...

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