Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review

Abstract

ObjectivesThere is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The scoping review aimed at examining the international literature on the experiences and needs of informal long-distance (LD) caregivers at the end of life, to address gaps in the evidence base, and to make recommendations for further research.DesignThe scoping review was conducted according to the methodological framework of Arksey and O’Malley. Studies of various designs involving kin caregivers were analysed narratively.Data sourcesA highly sensitive strategy was used to search CINAHL, Google Scholar, PsycInfo, PubMed and Web of Science Core Collection, from inception to 8 November 2021, with searches rerun in CINAHL, PsycInfo and PubMed on 31 January 2023. An additional hand search of the reference lists of the identified articles was performed.ResultsTwo authors independently assessed the titles and abstracts of 3827 scientific papers. As a result, 89 full texts were reviewed and 20 articles plus one review were included in the review. Five major themes were identified: (1) LD as a barrier to caregiving, (2) communication difficulties and the role of video and telephone calls, (3) the burdens and benefits of LD caregiving, (4) interaction and conflict with local caregivers and (5) LD caregivers’ wishes and needs for support.ConclusionsFurther quantitative and mixed-methods studies should be undertaken to improve our understanding of LD caregiving for relatives at the end of life. Studies to explore the feasibility and implementation of communication technologies in end-of-life LD caregiving are also needed.