Assessing the caregiving burden of the family members of patients receiving palliative care in a tertiary care setting in Karachi, Pakistan: A mixed method approach

Parveen Chagani, Salma Rattani, Khairunnisa Mansoor, Salima Shams, Atif Waqar

Abstract


Background: A family caregiver is a person from a patient’s family who is looking after the sick individual and helps to fulfill the needs related to activities of daily living and overall well-being of the patient. This may impact the life of the family caregiver. This study aimed to assess the caregiving burden of the family members of patients receiving palliative care.

Methods: A convergent parallel mixed methodology design was employed to achieve the study objectives. Quantitative data were collected from 323 family caregivers using the Zarit Burden Interview (ZBI) tool. Participants from the quantitative phase were also invited to participate in individual qualitative interviews, which continued until data saturation was achieved. A semi-structured interview guide, including probing questions, was used to explore the burden experienced by family caregivers (n = 15).

Results: The overall mean burden score of 29.22 depicted a high burden in the study cohort. The domains of burden in relationship and emotional well-being were mainly affected by the caregiving task. Three themes were extracted from the interview transcript analysis: care providers’ burden, factors that add to their burden, and factors that relieve the burden.

Conclusion: Family caregivers of terminally ill patients receiving palliative care are highly burdened and stressed, impacting their own physical and emotional wellbeing. The impact ultimately affects the sick individual who needs care. Interventions, focusing on the caregiver’s physical and psychological concerns, that offer support in lessening the caregivers’ burden and improving patient care-related outcomes are of utmost importance.

Keywords: care providers burden, oncology nursing, palliative care, low- and middle-income countries (LMICs)

DOI:10.5737/23688076355657


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References


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