Being a relative of a person with cancer can be an emotional burden, but caregiving is often done with love: a survey study amongst relatives

PURPOSE: Understanding how relatives experience the cancer journey and supporting their quality of life is essential to sustain informal care. This study aimed to explore how many relatives experienced a high emotional burden and experienced caregiving as burdensome. Furthermore, we studied the factors associated with their experiences. METHODS: A cross-sectional national exploratory online survey using convenience sampling was conducted among relatives of patients with cancer in the Netherlands. Questions focused on their experiences as a relative, the support they provided and impact on daily life. Univariate logistic regression analyses were performed to identify associated factors. RESULTS: In total, 3171 relatives completed the survey. The majority (93%) indicated that it feels good to be there for their relative, but most respondents are also afraid of losing their relative to cancer (83%). One in five relatives reported experiencing a significant burden because of being a relative and because of caregiving. Experiencing a high burden was associated with whether a relative fully adjusted their life to that of the patient and whether the relative pretended to be stronger than they felt. CONCLUSION: While being a relative of someone with cancer is tough, there are also positive experiences. Caregiving is often done with love, and it can at the same time be an emotional burden. Relatives often pretend to be stronger than they feel. This might aggravate the burden of caregiving. Besides, relatives may benefit from not fully adjusting their lives and taking time for themselves. This may reduce the emotional burden and support their long-term caregiving ability.