An exploration into the lived experiences of informal caregivers of people with prolonged disorders of consciousness - Occuptional engagement patterns, role change and perceptions of the care needs ot their loved one

Abstract

Purpose of the study: The numbers of people surviving with prolonged disorders of consciousness (PDOC) following severe acquired brain injury are growing. There are no studies from Ireland which explore the role that family members play in providing long-term care for people with PDOC. The purpose of this study was to investigate the lived experiences of the caregiving role and its impact on the daily occupations, routines, roles and quality of life of family (informal) caregivers. The study included an exploration of the preparation received to adopt the caregiving role and the support available to assist with managing the role. Methodology: A non-experimental, descriptive mixed methods research design was chosen to meet the broad aims and objectives of the study, with data gathered sequentially over two phases. Purposive, convenience sampling of the next of kin of patients admitted to a tertiary rehabilitation hospital between years 2000-2013 was employed. A survey design using a postal questionnaire was adopted to gather predominantly quantitative data including demographic information in phase one. In phase two, mixed methods including quantitative self-rating questionnaires of caregiver strain and quality of life, and a time-use log were used followed by qualitative description design utilising semi-structured interviews to explore the lived experiences of a smaller sample. Results: Completed questionnaires were returned by 20 respondents of a sample of 37 next of kin, representing a 54% return rate. The majority were female (60%), and providing care for relatives residing in residential care facilities. With the exception of one (a sibling), all were either parents or spouses. Forty percent were in paid employment and fitted caregiving around their work roles. The majority of participants reported receiving training to prepare for caregiving, mainly practical skills based training. Ongoing long-term review by rehabilitation specialists was rare among the sample and a yearly review was highlighted as the initiative that might support the respondents most in managing caregiver roles in to the longer-term. Qualitative findings from 10 participants who volunteered to progress to phase two highlighted that caregiving was a time consuming, multi-faceted and skilled role, and was adopted by numerous family members. Caregiving was enduring, life changing and central in the lives of the participants; involving personal sacrifices including abandoning leisure and social activity, juggling caregiving with work and having little time for rest. Dealing with a bureaucratic system was a source of strain and participants described feeling duty-bound to fill gaps in services for their relatives. Caregiving impacted upon quality of life with the future becoming unthinkable and planning time use was challenging. Conclusions: Caregiving for a person with PDOC has an enduring and profound impact upon the lives of family caregivers, significantly impacting upon occupational engagement, time use and life roles. The findings highlight a need for a broad approach to caregiver training; ongoing intervention to support informal caregivers and a need for education for formal healthcare providers in to the management of people with PDOC, which may reduce family caregiver strain and support family caregivers to achieve greater occupational balance.