Contents lists available at ScienceDirect Health & Place journal homepage: www.elsevier.com/locate/healthplace Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of- life care Debbie Horsfall a, ⁎ , Rosemary Leonard b , John P. Rosenberg c , Kerrie Noonan b a School of Social Sciences and Psychology, Western Sydney University, Locked Bag 1797, Penrith, NSW 2751, Australia b School of Social Sciences and Psychology, Western Sydney University, Penrith, Australia c Institute of Health and Biomedical Innovation, Queensland University of Technology, Kelvin Grove, Australia ARTICLE INFO Keywords: Caring Home death Wellbeing Informal networks ABSTRACT Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non- human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home. 1. Introduction The importance of being at home for a person dying of a terminal illness is receiving increasing attention in the literature. Understandably, the needs and experiences of the dying person are usually the focus (Milligan et al., 2016; Rosenberg, 2011; Williams, 2002) with some attention being given to family caregivers (Turner et al., 2016; Milligan et al., 2016). There is, however, an increasing focus on home as a preferred place to die (Gomes et al., 2013; Palliative Care Australia, 2011) and growing policy imperatives towards dying in place (Swerissen and Duckett, 2015; Gott et al., 2014). In Australia, most of end-of-life (EOL) care takes place at home and certainly hospices and hospitals could not cope if it did not. People's stated preference for home as place of death and dying can be understood as an attachment to place; an emotional response to the social, physical, emotional and spiritual dimensions of the environment which can engender a sense of identity, security and belonging. Place- attachment is understood as the result of the person/process/place relationship (Scannell and Gifford, 2010), although more attention is given to the social dimensions of place-attachment than the physicality of the place or what actually happens there (Lewicka, 2011). There are many reported benefits of place-attachment, including better health outcomes, increased and improved social relationships, and apprecia- tion of, and satisfaction with, one's environment (Tartaglia, 2012). Related concepts of place-identity (Proshansky et al., 1983) and place-dependence (Shumaker and Taylor, 1983; Moore and Graefe, 1994; Vaske and Kobrin, 2001) are useful for understanding caring at home; when a place meets a person's needs they become increasingly dependent on that place and choose to stay there. The longer a person stays in a place the more likely that home will become central to their identity, especially if that place also provides feelings of distinctiveness, continuity, self-esteem and self-efficacy (Anton and Lawrence, 2014). This research explored if and how home-place, which we propose encompasses the social and physical dimensions of place, supports carers’ and caring networks’ wellbeing, and thus their ability to continue to care. We use the lens of home as a potential therapeutic landscape (Williams, 2002) and ask if home may indeed have health promoting aspects. 2. Home, caring and wellbeing Home as a preferred place to die is contested in the literature with arguments coalescing around a pragmatist view that hospital will remain the actual place of death for most people (Pollock, 2015) and a view that home is a simplistic notion which is romanticised, idealised and poorly understood (Gott et al., 2014; Randall et al., 2017). Current policy developments toward the deinstitutionalisation of death may result in moving the burden of care to the community with caring and http://dx.doi.org/10.1016/j.healthplace.2017.04.003 Received 2 December 2016; Received in revised form 10 April 2017; Accepted 13 April 2017 ⁎ Corresponding author. E-mail address: d.horsfall@westernsydney.edu.au (D. Horsfall). Health & Place 46 (2017) 58–64 1353-8292/ Crown Copyright © 2017 Published by Elsevier Ltd. All rights reserved. MARK