Background The important contribution made by caregivers has been recognised in the international literature. However, caregiving for someone with a life-limiting illness often involves physical, emotional and other practical challenges. In order to support caregivers in their dual roles as care provider and care recipient, it is essential to understand the extent of their burden and the circumstances contributing to this.
Aim To assess caregiving burden among caregivers known to specialist palliative care teams, and identify whether clinical or demographic factors are associated with reported burden.
Methods Validated measures were administered during face-to-face interviews with caregivers in three regions of Ireland. The Zarit Burden Interview (ZBI) was used to assess caregiver burden, and financial impact associated with caregiving was measured using the Cost of Care Index. Participants were divided into low- and high-burden groups, using a previously established threshold of 24 for the ZBI score. Differences between regions were tested for statistical significance. Multiple linear regression investigated predictors of caregiver burden.
Results 69 caregivers were interviewed. The mean ZBI score was 26.8, and did not vary significantly between study sites (p=0.215). Overall, 51% of participants were considered heavily burdened. A significant proportion (40.6%) agreed that caring for their loved one was causing them to dip into savings, while almost one-quarter (24.6%) reported giving up necessities because of the costs associated with caregiving. Caregiver age (p=0.01), patients’ psychosocial burden (p=0.045) and financial hardship (p<0.001) were significant predictors of caregiver burden.
Conclusion Understanding the difficulties experienced when caring for someone with a life-limiting illness allows for better supporting the caregiver. The findings of this study suggest that younger caregivers are particularly susceptible to feeling heavily burdened. Additionally, comprehensive support of caregivers in all circumstances might require adequate attention to financial protection and additional supports to address psychosocial burden.
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