2017_Caregivers loneliness.pdf (236.36 kB)
Experiences of loneliness associated with being an informal caregiver: A qualitative investigation
journal contribution
posted on 2017-06-28, 10:49 authored by Konstantina Vasileiou, Julie Barnett, Manuela Barreto, John Vines, Mark Atkinson, Shaun Lawson, Michael WilsonMichael WilsonAlthough 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. As part of a cross-sectional, qualitative study, 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.
Funding
This study is part of a larger research project, titled Loneliness in the Digital Age (LiDA): Developing Strategies for Empathy and Trust (grant number: ES/M003558/1). 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).
History
School
- The Arts, English and Drama
Department
- English and Drama
Published in
Frontiers in PsychologyVolume
8Issue
APRCitation
VASILEIOU, K. ... et al, 2017. Experiences of loneliness associated with being an informal caregiver: A qualitative investigation. Frontiers in Psychology, 8, Article 585.Publisher
Frontiers Media © The AuthorsVersion
- VoR (Version of Record)
Publisher statement
This work is made available according to the conditions of the Creative Commons Attribution 4.0 International (CC BY 4.0) licence. Full details of this licence are available at: http://creativecommons.org/licenses/ by/4.0/Acceptance date
2017-03-29Publication date
2017Notes
This is an Open Access Article. It is published by Frontiers Media under the Creative Commons Attribution 4.0 International Licence (CC BY). Full details of this licence are available at: http://creativecommons.org/licenses/by/4.0/ISSN
1664-1078eISSN
1664-1078Publisher version
Language
- en