‘I am closer to this place’—Space, place and notions of home in lived experiences of hospice day care
Highlights
► Using concepts from existential geography we consider hospice as a homelike place. ► Through qualitative methods we explore patients’ lived experiences of hospice day care. ► Hospice can be a therapeutic landscape which includes non-therapeutic places. ► As a place hospice helps to mediate transitions between the unhomelike and homelike. ► We propose three existential modes that illustrate becoming ‘at-home’ in hospice.
Introduction
In the UK, the 282 palliative day care facilities are diverse, broad and complex in scope and philosophy (Stevens et al., 2011). Typically, hospice day care provides a facilitative environment for people with terminal or life limiting illnesses and their families. Whilst most patients have cancer, patients with other conditions including Motor Neurone Disease, Parkinson’s disease and AIDS are increasingly seen as eligible. The hospice day centre commonly provides a combination of medical, social and respite care alongside arts and crafts, baths, cooked meals, massage and relaxation therapies during weekdays (Goodwin et al., 2002, Myers and Hearn, 2001). The centres stand alone, or are attached to the inpatient unit of a palliative hospital ward or a residential care hospice in the community. Although day care services are the fastest growing of a wide range of palliative care services, they are also the least researched (Myers and Hearn, 2001, Spencer and Daniels, 1998) and still remain somewhat confusing entities to many patients and health professionals (Myers and Hearn, 2001, Littlewood and Johnson, 2006). A more complete understanding of what they provide and how they contribute to the holistic care of patients is needed (Stevens et al., 2011).
Section snippets
Hospice, home and place
The principles of the modern hospice movement now inform services which have developed in different settings including hospitals, hospices, day care units and individuals’ homes. The terms ‘hospice’ and ‘hospice care’ are frequently taken as a philosophy of care, omitting the importance of the physical place (Howarth, 2007, Salisbury, 1999, Spencer and Daniels, 1998). Raudonis and Acton suggest that:
“Hospice is a concept of care, not a place. Hospice is based on a holistic philosophy of living
Therapeutic landscapes and re-engaging with existential geographies
The concept of therapeutic landscapes (Gesler, 1992) usefully provides a metaphor to explore the relationship between health and place (Gesler, 2005). According to Williams, “therapeutic landscapes are those changing places, settings, situation, locales, and milieus that encompass the physical, psychological and social environments associated with treatment or healing” (Williams, 1999, p, 2). The therapeutic landscape concept has so far been used to explore a variety of healthcare settings
Methodology/methods
This phenomenological study focused on an exploration of the geography of care within a hospice day care environment. The study used semi-structured interviews and photo-elicitation interviews with patients, staff and therapists; however, in this paper we report findings which arise from the analysis of the patients’ data.
Setting (context)
Situated in northern England, the hospice provides specialist palliative care for terminally ill people and people with life-limiting conditions who require management of complex symptoms. The hospice comprises a 19 bedded in-patient unit on the ground floor, and the day care unit on the first floor. The unit provides for up to 20 day care patients per day, each attending one session per week. The hospice is well known in the community with more than 65 percent of financial support coming from
Sampling
Purposive sampling was used to target recently admitted day care patients (aged over 18 years) at the hospice. The sample consisted of 11 day care patients. There were no restrictions on race or gender.
Recruitment
Patients who met the inclusion criteria were informed about the study and given an information pack by a senior day care nurse (SDCN). The following week the SDCN would ask the patient if they agreed to meeting with the researcher [AJM] so that he could introduce himself and talk about the research. If the person agreed to take part, written consent was requested. The interview was undertaken at the hospice by AJM at a time convenient to the informant. As a means of reducing any pressure on
Access and ethical considerations
Before applying to the Local Research Ethics Committee (LREC), AJM approached the hospice’s Head of Care and spoke to a number of therapists and staff to seek their opinions on the proposed research. The proposal was approved by the hospice board of governors and official agreement to start the research was received December 2006. Ethical approval by an NHS ethics review committee was granted in July 2007.
Data collection
To explore the lived experiences of patients, we used both face-to-face semi-structured interviews and photo-elicitation methods (Radley and Taylor, 2003a). In the past, the use of photo-elicitation in social and health care research has been rare (Harper, 2002), however, it has an increasing evidence base in health-care research with the development of a coherent evidence base studying space and place (Oneha, 2001, Radley and Taylor, 2003aRadley and Taylor, 2003b, Epstein et al., 2006, Rapport
Data-analysis
Initial coding of the transcripts helped to signpost themes which were then reflected upon in a hermeneutic phenomenological manner. Initial codes included, for example, “feeling safe to talk”, “closer relationships”, “intimate spaces”, “trusting in staff”, “going out of the way”. These led to the formation of the sub-theme “patient–staff relationships”, which eventually became a part of the overarching theme “Sheltering”. Four fundamental ‘existentials’ guided phenomenological reflection;
Findings
In reflecting on the themes it became apparent that three overarching existential themes resounded across the narratives of the informants. These became the three existential modes of being of ‘drifting’, ‘sheltering’ and ‘venturing’ that characterise the patients’ lived experiences of the hospice.
Each theme conveys a mode of being which reflects the way patients related to their particular lifeworld at particular times, from their reflections on how they felt before initially entering into
Drifting
Essentially, drifting is characterised by feelings of uncertainty and lack of control. As Frank (1995, p, 1) suggests, “serious illness ‘is a loss of the destination and map’ that had previously guided the ill person’s life”. Patients’ narratives often illustrated how they had effectively lost the bearings with which they had previously navigated their life and faced the chaos of uncertainty, experiencing fear when initially entering the hospice.
Sheltering
The informants’ initial drifting experiences gave way to a sense of sheltering as they became comfortable and at home within the hospice.
Hospice day care offered a place in which they could re-orient themselves towards a sense of homelikeness, through experiences of sheltering. Patients sheltered within a sense of certainty in the care which was provided, in supportive relationships with staff and other patients, and in a sense of community, while the notion of home was never far from the
Venturing
Homelike places provide a “point of departure” from which we move out and venture into “and take possession of the world” (Relph, 1976, p, 40). The hospice offered opportunities for the patients to orient themselves, to find their bearings and to move forward with their life. For some, that involved making new friends, learning new arts and crafts, learning about their own disease, and experiencing new ways of being cared for.
Drifting, sheltering, venturing: Finding a sense of home
The findings illustrate how drifting, sheltering and venturing provide a way to access the deeper meanings of home and place in terms of how the patients experienced these at the hospice.
We have shown that in drifting patients’ experience a loss of a sense of being at home in the world evident in feelings of existential outsideness (Relph, 1976), alienation, and uncertainty about their disease, their future and day care, which for many represented a psychological landscape of fear (Tuan, 1979).
Conclusion
Our phenomenological approach and use of theoretical concepts from existential geography has allowed us to theoretically contribute to the area, by bringing attention to the meaning-structure of the lives of people receiving care within the particular locality of a hospice day care setting.
Ultimately, the modes of drifting, sheltering and venturing reveal how patients perceived the spaces and places of the hospice in the context of health and illness, and how the various physical, social and
Role of the funding source
Funding was provided by the School of Nursing and Caring Sciences (now School of Health), University of Central Lancashire in the form of a Ph.D. Studentship to the first author (AJM).
Acknowledgements
The authors would like to thank all of the participants in the study; the staff, therapists and in particular the patients, who gave very generously their time, efforts and insights.
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