Petty, Stephanie
(2020)
Emotion-focused care for patients with dementia: defining distress and responsive care from hospital staff.
PhD thesis, University of Nottingham.
Abstract
Hospital care for patients with dementia needs to improve because of concern for patient wellbeing and hospital resources. When patients are distressed, care is particularly challenging. This thesis sets out definitions of emotional distress and emotion-focused care for hospital patients with dementia. Drawing directly upon the contributions of patients and ward staff, the thesis proposes solutions for improving care for patients in real-life hospital settings.
This thesis presents four studies.
Study 1 aimed to find out how emotional distress experienced by people with dementia has been described. The study is a mixed-method systematic literature review. Personal accounts of what emotional distress is and what causes it were sought and analysed using corpus-based and ethnographic methods. This provided a comprehensive and original description of emotional distress for people with dementia from the largest number of viewpoints to date. The findings established that complex and varied emotions are well described for people with dementia, which gives an alternative viewpoint to the care of people with dementia to the use of diagnostic labels to understand and respond to mood. Recommendations were made for this understanding to inform the design of holistic healthcare.
Study 2 is presented in two parts. The aims were to describe how the emotional distress of hospital patients with dementia is noticed, understood and responded to by hospital staff, in order to develop an understanding of emotion-focused care that could be achieved within routine hospital practice. Interviews were conducted with a full UK hospital ward team providing dementia care (n=47), using freelisting methodology, which gives quantitative and qualitative findings. The study produced a description of distress as it existed within hospital practice and produced a menu of ways that staff across the hospital could act to deliver emotion-focused care. The results showed that hospital staff had a shared understanding and shared approach to emotional distress that had not been described in literature before. Hospital staff emphasised existing resources, including existing personal and professional caregiving experiences of staff members; this is important because the findings could have immediate impact on current practice.
Study 3 aimed to explore the specific barriers and facilitators to hospital staff caring for the emotional wellbeing of patients with dementia, in order to make recommendations for practice that were sensitive to hospital priorities and existing resources. Semi-structured interviews were conducted with hospital nursing staff (n=12) from a hospital site different from that in Study 2, which provided long-term care placements for patients with complex care needs. Thematic analysis was used to describe the conditions under which delivering emotion-focused care was more or less possible. Findings recommended gathering concise, personal patient information, sharing multidisciplinary and personal skills and investing in an ethos of being with the patient in their experience; changes that could be effectively implemented without incurring additional costs. Studies 2 and 3 suggested that under-recognised resources already exist within routine hospital care to improve the emotional wellbeing of patients with dementia.
Study 4 aimed to present the requests for care made personally by hospital patients with dementia when they are emotionally distressed, to give the perspective of patients with dementia that is mostly missing from care planning in hospitals. The study is an analysis of written advance care planning documents that were retrieved from real world hospital practice. Descriptive phenomenology was used to describe the essential components of the care requests. The results showed that requests were personalised and varied with the type and extent of distress felt, and could not be easily simplified into a description of care that would meet the needs of all patients; however, personalised care was requested succinctly by patients with dementia using advance care planning documents, suggesting their value in making this knowledge available within routine hospital practice.
The thesis contributes to practice by recommending solutions for improving the care of patients with dementia that suit real world hospital practice, as described by the key stakeholders of frontline hospital staff and patients with dementia personally. Collectively, the findings of this thesis showed that the emotions of people with dementia were individually variable, extreme and understandable, changing in meaningful ways as a reaction to circumstances. Knowing the patient, being with the patient and sharing existing expertise amongst peers were priorities for hospital staff; use of under-recognised resources within routine hospital care were described as achievable mechanisms for promoting emotion-focused care.
This thesis contributes to the research literature by presenting original, empirically supported perspectives that promote the emotional wellbeing of people with dementia.
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