Patient participation in everyday life in special care units for persons with dementia. “A MATTER OF PRESENCE” (original) (raw)
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International Journal of Older People Nursing, 2010
The aim of this study was to explore 'patient participation' in everyday activities for persons with dementia living in special care units in nursing homes. Studies about how 'patient participation' appears in the context of special care units for persons with dementia are lacking. The study has an explorative design. Grounded theory was chosen. Data collection was carried out by means of open observations and additional conversations with residents and personnel. Simultaneously, data analysis was performed with open, axial and selective coding. The findings showed that 'patient participation' concerned 'A matter of presence' as the core category. The other categories described as 'presence of personnel' and 'presence of residents', were strongly connected to the core category as well as to each other. Presence of personnel comprised three levels; being there in body, which required physical presence; being there in mind, which required presence with all senses based on knowledge and competence; and being there in morality which was understood as being fully present, as it was based on humanistic values and included the two other levels. Presence of residents comprised 'ability and wish' and 'adaptation'. The presence of the personnel had a huge impact on the ability and will to participate of the residents. Organizational conditions concerning leadership, amount of personnel and routines as well as housing conditions concerning architecture and shared accommodation, could stimulate or hinder 'patient participation'. The study highlighted the great impact of the personnel's presence in body, mind and morality on the participation capacity of the residents. The great importance of the nurse leaders was stressed, as they were responsible for organizational issues and served as role models. Group supervision of the personnel and their leaders would be an implication to propose, as these kinds of reflection groups offer opportunities to reflect on values, actions and routines.
Relatives' participation in everyday care in special care units for persons with dementia
Nursing Ethics, 2014
Background: Research concerning relatives' participation in the everyday care related to persons living in special care units for persons with dementia is limited. Research questions: To examine relatives' participation in their near one's everyday care, the level of burden experienced and important factors for participation, in this special context. Design: The study had a cross-sectional design, and data collection was carried out by means of a studyspecific questionnaire. Participants and context: A total of 233 relatives from 23 different special care units participated. Ethical consideration: The study was approved by the Norwegian Social Science Data Services. Results: A great majority of relatives reported that they visited weekly and were the resident's spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden. Discussion: This study indicated that relatives were able to make a difference to their near one's everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident's preferences, information concerning these issues is of utmost importance. Conclusion: This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident's well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents' life history and preferences is available and used should be implemented in practice.
International Journal of Older People Nursing, 2017
Background: Recognising demographic changes and importance of the environment in influencing the care experience of patients with dementia, there is a need for developing the knowledge base to improve hospital environments. Involving patients in the development of the hospital environment can be a way to create more responsive services. To date, few studies have involved the direct voice of patients with dementia about their experiences of the hospital environment. Design and method: Using an action research approach, we worked with patients with dementia and a team of interdisciplinary staff on a medical unit to improve dementia care. The insights provided by patients with dementia in the early phase shaped actions undertaken at the later stage to develop person-centred care within a medical ward. We used methods including go-along interviews, video recording and participant observation to enable rich data generation. Aim: This study explores the perspectives of patients with dementia about the hospital environment. Results: The participants indicated that a supportive hospital environment would need to be a place of enabling independence, a place of safety, a place of supporting social interactions and a place of respect. Conclusions: Patient participants persuasively articulated the supportive and unsupportive elements in the environment that affected their well-being and care experiences. They provided useful insights and pointed out practical solutions for improvement. Action research offers patients not only opportunities to voice their opinion, but also possibilities to contribute to hospital service development. Implications for practice: This is the first study that demonstrates the possibility of using go-along interviews and videoing with patients with dementia staying in a hospital for environmental redesign.Researchers, hospital leaders and designers should further explore strategies to best support the involvement of patients with dementia in design and redesign of hospital environments.
Health Services and Delivery Research, 2018
Background Improving the care of people with dementia on acute hospital wards is a policy priority. Person-centred care is a marker of care quality; delivering such care is a goal of service improvement. Objectives The Person, Interactions and Environment (PIE) Programme comprises an observation tool and a systematic approach to implement and embed a person-centred approach in routine care for hospitalised patients with dementia. The study aims were to evaluate PIE as a method to improve the care of older people with dementia on acute hospital wards, and develop insight into what person-centred care might look like in practice in this setting. Methods We performed a longitudinal comparative case study design in 10 purposively selected wards in five trusts in three English regions, alongside an embedded process evaluation. Data were collected from multiple sources: staff, patients, relatives, organisational aggregate information and documents. Mixed methods were employed: ethnographi...
A Qualitative Exploration of the Needs of Community-Dwelling Patients Living with Moderate Dementia
International Journal of Environmental Research and Public Health, 2021
Few studies have focused on developing a better understanding of the needs of patients with moderate-stage dementia. This study aimed to explore the needs of people living with moderate dementia and receiving home-care services from a local mental hospital. The study adopted a descriptive qualitative approach with purposive sampling to recruit patients with moderate dementia and receiving home-care services. Data were collected by face-to-face interviews and content analysis was used to interpret the experiences in the dialogue data. The results showed that the needs of people living with moderate dementia receiving home-care services contained four themes: the demand for company and care, the wish to recall familiar images, the need of reaffirming life purpose and value through reflection and reminiscence, and the desire for making autonomous end-of-life decisions. In addition to daily care, people living with moderate dementia crave companionship, expect meaningful exchanges of ex...
People with dementia and the hospital environment: the view of patients and family carers
International journal of older people nursing, 2014
A metropolitan geriatric evaluation and management (GEM) facility in Australia was undergoing expansion, and consideration for the needs of individuals with dementia and their family carers was identified as important in planning the new facility. Existing literature revealed that people in hospital value privacy, minimal noise, family amenities and homeliness, but these findings did not consider the perspectives of the person with dementia specifically. The aim was to elicit the perspectives of current inpatients with dementia, and their family carers, about the environment/design features that they believe are necessary for people with dementia, and their family carers. This qualitative study utilised in-depth semi-structured interviews to obtain information from current inpatients with dementia and their family carers. Participants described how the care received was more important than the physical environment; however, participants also valued homeliness, privacy for the patien...
European Social Work Research, 2024
Dementia affects memory, language and motor functions, engenders behavioural and psychological disorders, and progressively weakens the ability of older people to communicate and interact. Simultaneously, maintaining residents in social exchanges and enabling them to behave as a ‘person’, a status to be understood in moral terms, is a main objective of care work in nursing homes. Based on an ethnographic study conducted in a long-term Swiss care facility and by focusing on professionals’ inquiries, this article uncovers two ‘arts of doing’ used by professionals to make contact with residents and maintain them in the fabric of relationships. First, ‘sensitive arts of doing’ are in play when professionals seek to interpret a situation from a resident’s gestures and emotions in order to (re)establish the fine-tuning necessary for continued interaction. Second, ‘hermeneutic arts of doing’ are employed when professionals try to determine how residents perceive their environment and elucidate how to make sense of what they are doing together. Highlighting these two ‘arts of doing’ gives depth and substance to the relational activities undertaken by professionals and proposes concrete methods that can support care, interaction and value-based practice with older people with dementia.
Dementia, 2009
In the past twenty years, the importance of the physical and social environments in supporting the person with dementia has gained a much higher profile in dementia care. Despite efforts to move aged care away from the medical model to a more balanced social model of care, we still struggle with the dominance of an institutional context which impedes individuality and choice. This article argues that the experience of the person with dementia should frame the perspective brought to built design and the philosophy of care -in essence, 'looking out from the inside'. Shifting the emphasis from condition to experience encourages the culture change needed to create environments that allow the person with dementia to be an active participant in everyday life rather than a passive recipient of care. Based on the development of a resource for residential and respite facilities in Australia, seven living experiences are identified: the presentation of self-experience, eating experience, personal enjoyment experience, bedroom experience, family and community connections experience, end-of-life experience and the staff experience. Each is discussed to show how consideration of the living experiences provides a way to focus thinking for design of the built environment to practically support the person with dementia, thereby addressing the wider spectrum of issues in creating a dementia friendly physical and social environment from the perspective of the person with dementia.
Journal of Central Nervous System Disease, 2019
Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals’ choices and human rights were upheld. Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff. Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff. Discussion: Participants were able to identify factors of residents’ well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than...
The senses in practice: enhancing the quality of care for residents with dementia in care homes
Journal of Advanced Nursing, 69(1), 77-90, 2013
Aim. The study aimed to develop, deliver, and evaluate a training programme in care homes to enhance the quality of care for people living with dementia based on the principles of relationship-centred care expressed through the Senses Framework. Background. There are increasing numbers of people living with dementia worldwide with a growing proportion requiring residential long-term care. This makes the quest for enhancing the quality of care and quality of life for people with dementia ever more pressing. Design. A mixed-methods design was used adopting a Practice Development approach. The findings from one care home in the North West of England are reported. Methods. Eight facilitated workshops based on the principles of relationship-centred care were completed and evaluated in 2010, using pre- and postintervention design. A focus group was undertaken with staff on completion of the study to gain a more comprehensive understanding of the practice/training context, augmented by case examples of changes in practice identified from the study workshops. Results. Structured questionnaires were used to profile the care home before and after the training. Following the workshops, staff felt more able to collect and use biographical information. In particular, staff reported how this information supported them to initiate meaningful conversations with the person with dementia as part of everyday care routines, thus improving overall feelings of well-being. Conclusion. Using a biographical approach to care planning structured through the Senses Framework helped staff to develop a greater understanding of the person with dementia.