1. Caring from home to hospice
Dunsmore-Dawson, A. King, N. and Rodriguez, A.
The Centre for Applied Psychological Research
On becoming a carer
Background
In  2002, the World Health Organisation (WHO) drew attention to the physical, spiritual and psychological impact of chronic illness on family members and carers of patients receiving palliative care (Sepulveda et al, 2002).
Historically carers’ experiences have been assumed to unfold along a predictable pathway  in line the with the illness trajectory of the patient. Caring in the home for a spouse is a significant life event. The transference then to hospice care has been identified as a further significant life event which impacts on each carer in idiosyncratic ways (Duggleby et al, 2010)
Aim
The aim of the current study was to illuminate the salient features of the move into hospice care from home care, from the carer’s perspective.
Method
We explored the experience of seven different spousal carers of patients who received end of life care in two hospices.   Influenced by the work of van Manen, this research utilised interpretive phenomenology, with data analysed using the Template Analysis approach. Individual recollections were thematically explored.
Theme 1. An emerging role
The self-concepts of the carers in this study were changed in both sudden and gradual ways. Of particular interest was the imperceptible boundary line where the role of spouse or family member changed or merged with the role of carer.
It emerged that, carer’s began caring by being protective of their role as spouse or family member and were reluctant to identify with a term that inferred that they were caring out of a sense of responsibility or duty.
Theme3: Slipperiness of time
Time provided a fragile and unstable framework as experiences were recalled as slippery segments of precious time. Some instances/phases felt endless while others passed too quickly. Participants inadvertently emphasized the precious nature of the present and how illness stole away precious time. Some carers became guardians of time, a precious finite resource which was ‘gifted’ in measurable units to selected visitors
Theme 2: A Filtering process
There were many transitions inherent within the carers experience and I envisioned a process of filtering as the carers focussed and reallocated their physical and emotional reserves. The differing contrasts in perception and emphasis upon what appeared to have been of significance to them, gave the impression of differing accounts of caring. I put forward that this was the result of the filtering of priorities and perceptions.
Robert: “She was at the stage where she needed not exactly looking after but I needed to be at home and erm just sort of care for her a bit and things like that ”   
Pamela: “I’m his wife and if I hadn't had been there the (hospice) staff would have done it but with me being there erm I did it just automatically as though he would have been at home”
Alice: “They couldn't be attentive to him all the time like I could because there were so many people… the staff kept saying “how are you doing it …day after day?” “… when you love somebody you do it don't you?”
Robert: “So my involvement with caring obviously stopped when she left the house” 
Phillip: “We actually had an appointment book because when she was in for a few days at one point there were 14 people there which upset some of the people who’d gone to see her as well . It was kind overwhelming so I bought it as a joke but people soon realised they can’t come unless they were in the book”