This thesis aimed to critique the research on person centred care (PCC) in neurorehabilitation, and consider how PCC in this setting can be further developed. Paper One reviews the extant literature on PCC in neurorehabilitation. The literature search returned 27 papers, which were critiqued for quality, how they conceptualised PCC, how they practiced PCC and the feasibility of PCC. Conceptualisations of PCC used varied from narrow conceptualisations of PCC as participation in goal setting, to broader ones which also incorporated issues such as shared decision making, outcomes, respect and emotional support. Similarly, methods of practicing PCC primarily used goal setting, with a minority of papers addressing outcomes and communication aspects of PCC. The review found that PCC is feasible for neurorehabilitation, with important benefits for clients and professionals. Providing PCC in neurological rehabilitation can be challenging and the literature review discusses ways to overcome barriers to PCC. The literature review highlights the need for methods to assess and develop PCC which are suitable for people with and without cognitive impairments. Paper Two addresses this need, by presenting research investigating the feasibility of using Dementia Care Mapping (DCM) on a neurorehabilitation ward. DCM is an observational method aims to document the quality of care from the perspective of the patient. DCM was found to be feasible for use on a neurorehabilitation ward, as shown by the suitability of the coding system. Q-methodology was used to assess staff perceptions of DCM. This further supported DCM feasibility, with staff reporting that DCM provided useful information for staff that they could use to improve the care they provided. DCM required some minor amendments in order to be used in a hospital rehabilitation environment and further amendments could improve its suitability for use in neurorehabilitation settings. Paper Three is a critical appraisal of both the literature review and research paper. The strengths and weaknesses of the use of both DCM and Q-methodology are critiqued, and consideration given to the limitations of the research.

No

Research Doctorate - Doctor of Philosophy (PhD) / There is little evidence to show the critical factors that impact on managing aggression in people with dementia and what model of care ensures integrity for both the resident and the personnel responsible for their care. Aggression in this study is defined as an overt act, involving the delivery of noxious stimuli to (but not necessarily aimed at) another organism, object or self which is clearly not accidental. (Patel and hope 1002. p 212). This study used ethnographic techniques, incorporating the use of critical incidents, to explore and explain the culture and context of care situations where nursing personnel experience aggression and violence when dealing with residents with dementia. A Critical Incident Technique was used to identify behaviours of both staff and residents that contributed to and or reduced the amount of aggression that occurred. In particular, this study explored the nature of aggression and the responses of staff and the tensions that exist in the maintenance of rights of both personnel involved in care and the residents for whom they care. Findings revealed the extent to which responses to violence and aggression are related to staff education and understanding of dementia, as well as the illness the resident is suffering at the time. Staff had employed some creative ways to manage aggression in residents. This idicated that a model of care based on person centred care (Kitwood, 1997) would be appropriate for the management of these residents. A framework for an alternate model for the care of people with dementia who are violent and aggressive based on the person centred care approach is proposed and suggestions made for future research.

No

Bakgrund: Hjärtsvikt är ett vanligt förekommande sjukdomstillstånd och diagnosen återfinns hos en kvarts miljon människor i Sverige. Behandlingen främjas av en personcentrerad omvårdnad med delaktighet och följsamhet hos den drabbade personen. Detta bygger på att sjuksköterskan ökar sin förståelse för personens unika situation. Syfte: Att beskriva personers upplevelser av att leva med hjärtsvikt Metod: En litteraturöversikt där 13 kvalitativa artiklar inkluderades. Resultat: Personer med hjärtsvikt upplever sig fysiskt begränsade av sin sjukdom. En försämring i både fysisk och psykisk hälsa visade sig. Resultatet redovisas i katergorierna; begränsningar i vardagen, förändringar i sinnesstämningen och förändringar i det sociala nätverket. Slutsats: Resultatet visar på en stor variation i upplevelserna hos personer drabbade av hjärtsvikt. Det är därför viktigt att sjuksköterskan har en bred kunskap och en omfattande förståelse för sjukdomen, då det främjar en individanpassad vård baserad på rådande förhållanden. Nyckelord: hjärtsvikt, personcentrerad omvårdad, upplevelser / Background: Heart failure is a common disease and the diagnosis is found in a quarter of a million people in Sweden. The treatment promoted by person-centered care with the participation and adherence of the affected person. This is based on that the nurse increase the understanding of the person's unique situation. Aim: To describe people's experiences of living with heart failure Methods: A literature review where thirteen qualitative articles were included. Results: People with heart failure feel physically limited by their disease. A deterioration in both the physical and mental health appeared. The results were divided into following main categories; limitations in everyday life, changes in mood and changes in the social network. Conclusion: It is important that the nurse has a broad knowledge and a comprehensive understanding of heart failure, when it showed a great variation in how people perceive their situation. This promotes an individualized care based on current conditions. Keywords: experiences, heart failure, person-centred care

Person-centred care is a holistic care approach that aims to build up and support the personhood of residents with dementia, and thereby enhance quality of life. Through a review of the literature on mealtimes in long term care homes, four main aspects of person-centred mealtime care were identified: providing food choices and preferences, supporting residents’ independence, promoting the social side of eating, and showing respect. Using a critical realist lens, this descriptive qualitative study examined current implementation of person-centred mealtime care, the influences on its implementation, and steps to more fully adopt a person-centred approach. Semi-structured interviews were conducted with 52 staff from four diverse long term care homes in southern Ontario. Participants included frontline workers, registered health care professionals, and managers. Interviews were transcribed and analysed for themes. A conceptual framework was developed through analysis of the interview data, identifying five key ways to support staff to provide person-centred care: forming a strong team, working together to provide care, enabling staff to know the residents better, equipping staff with a toolbox of strategies, and creating flexibility to optimize care. Specific strengths and areas for improvement in implementation of person-centred mealtime care were identified and explained using this conceptual framework. Elements of the framework were also applied to explain important considerations for hiring staff, educating and training staff, developing a culture of good teamwork, and involving family members and volunteers in mealtime care. / Canadian Foundation for Dietetic Research; Alzheimer Society of Canada

Older adults living with dementia are marginalized in society through the socially constructed binaries of old/young, able/disabled and ultimately us/them. These are manifested in a culture dominated by approaches towards illnesses that favor clinically inclined models of care which entail the search for cures rather than attention to the care required by and for individuals. To heighten their vulnerability, from an individual perspective, the cognitive nature of dementia often prevents people living with it from having a voice in their representation. Person-centered care is a philosophy that recognizes the importance of who the individual is and where they are situated in an effort to create a more holistic care experience. The Lodge at Broadmead is a residential care facility that has operationalized an explicitly person-centered philosophy of care. The main objectives of this project were to gain an understanding of the lived experience and implementation of person-centered dementia care from the many different perspectives contained within this facility as well as the methodological barriers associated with including people living with dementia in this type of research. To this end, one-on-one interviews and focus groups were conducted with a total of 16 staff members and leadership at The Lodge at Broadmead as well as one resident. These were informed by a 4 month period of observation in the form of volunteer work. Three main themes emerged around the implementation of person-centred care at The Lodge at Broadmead: identity maintenance, facilitating relationships, and aligning values. These themes represent the most important theoretical links between the physical and social aspects of the environment, and person-centred care’s ultimate goal of maintenance and enhancement of personhood for the residents. Drawing from my own research experience, there were several methodological challenges in undertaking the research as well which were: the institutional necessity of consent by proxy, a rigid interview approach, and not enough time spent with the residents. / Graduate / 0336 / 0351 / kyle.plumb@gmail.com

Older adults living with dementia are marginalized in society through the socially constructed binaries of old/young, able/disabled and ultimately us/them. These are manifested in a culture dominated by approaches towards illnesses that favor clinically inclined models of care which entail the search for cures rather than attention to the care required by and for individuals. To heighten their vulnerability, from an individual perspective, the cognitive nature of dementia often prevents people living with it from having a voice in their representation. Person-centered care is a philosophy that recognizes the importance of who the individual is and where they are situated in an effort to create a more holistic care experience. The Lodge at Broadmead is a residential care facility that has operationalized an explicitly person-centered philosophy of care. The main objectives of this project were to gain an understanding of the lived experience and implementation of person-centered dementia care from the many different perspectives contained within this facility as well as the methodological barriers associated with including people living with dementia in this type of research. To this end, one-on-one interviews and focus groups were conducted with a total of 16 staff members and leadership at The Lodge at Broadmead as well as one resident. These were informed by a 4 month period of observation in the form of volunteer work. Three main themes emerged around the implementation of person-centred care at The Lodge at Broadmead: identity maintenance, facilitating relationships, and aligning values. These themes represent the most important theoretical links between the physical and social aspects of the environment, and person-centred care’s ultimate goal of maintenance and enhancement of personhood for the residents. Drawing from my own research experience, there were several methodological challenges in undertaking the research as well which were: the institutional necessity of consent by proxy, a rigid interview approach, and not enough time spent with the residents. / Graduate / 0336 / 0351 / kyle.plumb@gmail.com

Yes / Person-centered care (PCC) has been the subject of several intervention studies, reporting positive effects on people with dementia. However, its impact on staff’s outcomes remains unclear. The purpose of this systematic review was to assess the impact of PCC approaches on stress, burnout and job satisfaction of staff caring for people with dementia in care homes. The databases PubMed, Web of Knowledge, Scopus and EBSCO and reference lists from relevant publications, were searched between December 2012 and March 2013. The review was limited to experimental and quasi-experimental studies, published in English and involving direct care workers (DCWs). Seven studies were included, addressing different PCC approaches: dementia care mapping (n=1); stimulation-oriented approaches (n=2); emotion-oriented approaches (n=2) and behavioral-oriented approaches (n=2). Five studies reported benefits on DCWs, suggesting a tendency towards the effectiveness of PCC on staff. However, methodological weaknesses and heterogeneity among studies make it difficult to draw firm conclusions. / Portuguese Foundation for Science and Technology

Yes / An experimental study using a pre-posttest control group design was conducted to assess the effects of a person-centred care based psycho-educational intervention on direct care workers’ stress, burnout and job satisfaction. The intervention aimed to develop person-centred care competences and tools for stress management. Four aged care facilities were randomly assigned to a psycho-educational or an education-only intervention (control). Data were collected from fifty-six direct care workers (female, mean age 44.72±9.02) through measurements of burnout (Maslach Burnout Inventory), job satisfaction (Minnesota Satisfaction Questionnaire-short form) and stress (Perceived Stress Scale) and focus-group interviews. Results showed significant positive effects in emotional exhaustion (p=0.029) and positive but no significant effects in stress and job satisfaction. According to qualitative data, the experimental group perceived enhanced group cohesion, emotional management and self-care awareness. Psycho-educational interventions may contribute to reduce direct care workers’ burnout. Further work is needed to determine the extent of its benefits. / Portuguese Foundation for Science and Technology