4 Wellbeing of informal caregivers

Background Informal (unpaid) caregivers provide care that goes beyond customary and normative support, and endure ‘silent suffering’ often unrecognised by healthcare providers. Understanding factors that contribute to the wellbeing of informal caregivers can further the capacity of healthcare workers to promote caregivers’ wellbeing. Methods We performed a qualitative study of semi-structured face-to-face interviews in Malaysia. Transcripts were read repeatedly for familiarisation, followed by coding and thematic analysis. NVivo11 software was used to analyse data. Results The five main themes shown to promote the wellbeing of informal caregivers are: acceptance, appreciation, hope, happiness and support. Finding acceptance mirrors the seven stages of grief – shock, denial, anger, bargaining, depression, testing and acceptance – and seems to be born out of having no other choice. This lack of choice is rationalised in three non–mutually exclusive ways: understanding that death is an inevitability of life, trust in the sovereignty of a higher power or god, and seeing death as the ultimate freedom from suffering. Caregivers were appreciative of healthcare providers, the time they had with their loved ones, the opportunity to give back to their loved ones, and were also grateful to god. Of note, skills traditionally seen as ‘soft’ by medical practitioners, were most appreciated – professionalism, providing education, responsiveness to requests and humanity. The hope seen in preserving wellbeing is built on having accepted their situation and shapes hope for realistic goals. Without acceptance, unrealistic hope would only frustrate and be detrimental to their wellbeing. Happiness is protective against negative rumination and is derived from the patients themselves, relationships and moments of respite. Support systems comprised spiritual or religious groups, family and friends, each catering to slightly different needs. Conclusion Awareness of these five factors that promote caregiver wellbeing should inform clinical practice and holistic care.