Experience of loneliness associated with being an informal caregiver: A qualitative investigation.
Frontiers in Psychology
Copyright: © 2017 Vasileiou, Barnett, Barreto, Vines, Atkinson, Lawson and Wilson. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Although providing care to a family member or friend may provide psychological benefits, informal (i.e. unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. A cross-sectional, qualitative study was designed. Sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children) and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g. dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.
This study is part of a larger research project, titled Loneliness in the Digital Age (LiDA): Developing Strategies for Empathy and Trust. LiDA is financially supported from the Economic and Social Research Council (ESRC) ‘Empathy and Trust in Communicating Online’ (EMoTICON) program, with funding from the Arts and Humanities Research Council (AHRC), the Engineering and Physical Sciences Research Council (EPSRC), the Defence Science and Technology Laboratory (Dstl) and the Centre for the Protection of National Infrastructure (CPNI).
This is the author accepted manuscript. The final version is available from Frontiers Media via the DOI in this record.
Online: 29 Mar 2017.