288 research outputs found
Achieving the Gold Standard of end-of-life care for people with dementia living in care homes
No full textNoCare homes play a major role in supporting people with dementia at the end of their lives. Seeking to understand the views of staff on the care they provide, Nicola Wheeler and Jan R Oyebode held focus groups with a range of staff in nine care homes in the West Midlands. Here they discuss their findings and implications for practice
The personal experience of partners of individuals with motor neuron disease
No full textMost research on partners’ experiences of living with a person with MND is questionnaire-based with no qualitative study focusing on the period between diagnosis and end-of-life care. This study aimed to provide an in-depth qualitative exploration of the experience of living with, and caring for, a partner with MND.Semi-structured interviews were conducted with eight individuals, and transcripts analysed from an interpretative phenomenological perspective. Two main themes were derived. ‘Impact on life’ included having concern for partner's safety, having social restrictions, being continually tired, struggling with anger and frustration, loss of intimacy and uncertainty around the future; while ‘Adjusting to the situation’ included trying to be strong, retaining a sense of normality, appreciation of specialist services, adopting a problem-solving approach, living day to day and ability to remain positive. In conclusion, experiences of stress and loss are illustrated in this sample of partners of those with MND, and it is suggested both these aspects should be integrated into understanding of carers’ experiences. Carers appear to inhibit their grief in order to appear strong. Greater understanding of the consequences of this would help in providing appropriate emotional support
A qualitative study with perspectives from African-Caribbean, Irish and white- British families
No full textIn the UK, it is estimated, by the year 2025, 50,000 people from minority ethnic communities will be living with dementia. Focusing on people with dementia who have immigrated to the UK from Ireland and the Caribbean, the aim of this thesis was to explore how these families perceived and coped with dementia, to find out whether there were specific cultural influences that required distinctive support.
Two systematic literature reviews were conducted; one explored how people from Irish and African Caribbean backgrounds cope with chronic illnesses. The second, considered how interventions can be successfully adapted for different cultural groups. Twenty-four families (eight Irish, eight African Caribbean, and eight white British) were involved in this study. Families, including the person with dementia where possible, took part in interviews. Using an analytic template based on the self-regulatory model of illness, relevant interview material was collated under ten themes: dementia identity, cure, personal control, treatment control, timeline, emotions, causes, coherence, consequences, and coping.
Minority ethnic groups distrusted formal services, often due to past discrimination. They experienced care home environments as culturally alien and community stigma discouraged them from using mainstream services. There was a high level of familism and trust between family members, and families looked to their own communities for support. These communities were not always dementia aware and there were high levels of stigma. Based on these finding and preliminary co-design work, future work should consider developing interventions to address stigma in communities and raise awareness in health care professionals.Alzheimer’s societ
Here, there is nobody. An ethnography of older people's end-of-life care in hospital
No full textThe alleviation of suffering lies at the core of compassionate end-of-life care, yet
little is known about the lived experience of suffering. Motivated by a series of
reports on poor care of older people in hospital, this study addresses suffering
in older people at the end of life in an acute hospital ward in the United
Kingdom. Methods were developed from a synthesis of ethnographic fieldwork
and phenomenological interpretation.
Data were collected using participant observation on an acute care ward for
older people in a hospital in Northern England, over 186 hours between June
and August 2015. Data included field notes, documents, photographs and
informal interviewing. Staff and patient participants were identified using
theoretical sampling. Data were analysed using a hermeneutic approach
involving a continuous process of analysis, further data collection, posing of
problems and questions, and interpretation. This cyclical approach to the data
enabled the development of interpretive perspectives which could then be
further explored in the field.
Findings suggested that care for older people was shaped by competing
ideologies of care and organisational regulatory processes. Particularly when
there was ambiguity regarding prognosis, there was a tendency for care to
default to a ‘rescuing’ acute care model. Through exploring the experiences of
individual patients and placing these in the context of cultures of care, I suggest
that iatrogenic suffering was a significant concern that often went unrecognised.
Patient-centred goals must be more focused upon avoidance of iatrogenic
suffering. Recommendations include innovations in clinical education and multiprofessional working
Optimisation of care transitions: Understanding coping strategies of South Asian family carers of a relative with advanced dementia
No full textBackground
With an expected increase of seven to eight-fold in the UK in the number of people from a Black Asian Minority Ethnic (BAME) heritage living with dementia, there will be a similar increase in the number of family carers. Whilst policy and research have discussed issues pertaining to awareness and access issues for minoritised ethnic communities, there remains an under-representation of these communities in services. A lack of understanding on the part of service providers as to how services could meet the needs of these carers, together with a mistrust of services, leads to bias and misconceptions about dementia care amongst South Asian families. Added to this, migrant communities are now well established in the UK, yet little is understood about the factors impacting on care and coping in the face of discrimination and prejudice. This adds to the complexities of caring for older relatives living with dementia.
Aims
The aim of this doctorate was to develop an understanding of how South Asian families cope with caring transitions connected with the care needs of advancing dementia. Emotional and physical coping strategies require some elements of individual capability but also some external elements, such as information, support and access to services.
This research set out to identify what, and how, it influenced South Asian family carers’ ability to cope, especially in the light of a lack of culturally appropriate services. I set out to explore these influences, as they are especially salient in the cultural context. The research explored how South Asian carers coped with transitions in dementia care whilst taking into consideration factors such family dynamics, cultural perspectives, values (including faith) and service provision.
Design and methods
I undertook two studies, both using a phenomenological methodology, underpinned by a social constructivist approach. The first study gathered retrospective accounts from former carers to identify key transitions in their experience of providing dementia care, and to identify factors to explore in a subsequent longitudinal study. It included in-depth semi-structured interviews with former carers from 5 families. The interviews were transcribed and then analysed using thematic analysis to identify key themes. These themes influenced the second study, where I interviewed carers from 7 South Asian families, who were actively caring for a relative living with advanced dementia. Four interviews took place bi-monthly with each family over a period of six months.
Results
Analysis identified a number of themes, which influence South Asian family carers’ ability to cope with the care needs of a relative living with advanced dementia. Study one identified five key themes, which were: stigma from family and community, access to information, appropriateness of services, expectations regarding caregiving, and attitudes arising from faith and religion regarding care provision. Family carers identified the transitioning aspects of South Asian communities themselves and how these influenced the adapting nature of culture, values and social norms in society. These include the changing nature and constructs associated with care and caregiving as care needs increase or become complicated, in relation to what is acceptable as care needs increase or become complicated. Study two incorporated findings of study one. Themes from the analysis identified some general factors, such as changing attitudes to cultural influences, faith-based impacts, carers’ own ability to cope with caring, coping as a family, gender-based influences, services and stigma as factors that impacted their coping experiences.
Conclusion
This PhD raised some interesting aspects relating to coping with care that included the value of nuanced approaches to understanding the needs of the family carers and their frustrations with barriers to accessing services that were associated with faith, gender and cultural expectations or obligations. There was a clear difference between the views of older South Asian family carers, who held more traditional values to providing care, and younger British-born carers, who saw their faith and values as not opposing their ability and desire to seek external sources of support, community or statutory services. The research therefore moves forward the previous discourse mainly restricted to awareness and attitudes. It moves it towards practical recommendations that can help support services to be more open-minded and tackle their own biases. Encouraging this, whilst taking into consideration aspects such as family-centred approaches or faith-based influences in supporting carers to better cope with the demands of caring for a relative with advancing dementia.Alzheimer’s Societ
A longitudinal exploration of the experience of fronto-temporal dementia in intergenerational families
No full textBackground:
Dementia presents challenges for whole families requiring on-going adaptation. Family relationships provide important benefits, thus understanding the impact of dementia for families is critical to facilitating their wellbeing. Behavioural variant Frontotemporal Dementia (bvFTD) brings specific challenges for relationships, however little is understood about how these are experienced or how families adjust.
Aims:
This research sought to develop an in-depth understanding of the inter-generational family experience of bvFTD over time.
Method:
Using a qualitative design, nineteen people were interviewed from seven families, including people living with bvFTD. Interviews occurred over three time points. Narrative analysis and grounded theory were used to understand how relationships are affected and the psycho-social coping processes involved in adjustment over time.
Results:
Four themes emerged;
- Cohesive and connected --- distant and disconnected
- Challenges to we/ I
- Assimilating, adjusting and reconstructing --- resisting, denying, being stuck
- A changing we / I --- an entrenched we / I
Results illustrate the influence of pre-existing relationships on family experiences of bvFTD. Challenges to family relationships occurred, including changes in mutuality and increased responsibility. Levels of awareness and understanding, influenced by factors such as proximity impacted upon individual and family adjustment. Assimilating these changes was critical to developing strategies for managing the impact on the relationship and adapting to ‘a changing we’. For closest family members including partners, grief and loss were experienced resulting in the need for a parallel adaptation to a changing ‘I’. Acceptance and adaptation was critical to supporting the wellbeing of the person with bvFTD.The Florence Nightingale Foundation; The General Nursing Council for England and Wales Trust; The Atkinson Morley and Amandus Club Neuroscience
Making the most of time: A Grounded Theory to explain what facilitates nursing home staff to connect with residents living with advanced dementia
No full textBackground: People living with advanced dementia in nursing homes often
spend the majority of time alone, with little contact with anyone. The need to
connect with others is a central part of a philosophy known as Person
Centred Dementia Care. A significant body of literature demonstrates the
effectiveness of a range of approaches that facilitate connections, yet, we
know little about staff perspectives on what facilitates them to connect on a
daily basis.
Aim: To develop a Grounded Theory to explain what facilitates nursing home
staff to connect with residents living with advanced dementia.
Methods: Semi structured interviews were conducted with nursing home
staff (n=21) and relatives (n=5) from seven nursing homes. Following
Strauss and Corbin’s (1990, 1998) Interpretivist Grounded Theory
methodology, data collection and analysis proceeded iteratively, and
theoretical sampling was used to develop the emergent theory.
Results: The Grounded Theory ‘making the most of time’ explains that most
connections occurred during personal care. Interdependent contextual and
individual factors facilitated staff to make the most of time. Effective leaders
were described to create a caring culture in which informal leaders
(experienced staff) acted as role models. Staff were then more likely to
understand, accept and tolerate dementia, know connections were part of
their role, get to know residents and express caring values. In the right physical environment, this then facilitated staff to make the most of time
during personal care. Increased training and education from specialised
dementia units and experiential knowledge from family engagement then
supplement such contexts.
Implications: Future research could empirically test the theory ‘making the
most of time
Using technology to support the social and emotional well-being of nurses: A scoping review protocol
No full textAims. (1) To review the published literature on the use of technology to provide social or emotional support to nurses, (2) to evaluate and identify gaps in the research, (3) to assess whether a systematic review would be valuable, (4) to make recommendations for future developments.
Design. The protocol for the scoping review has been developed in accordance with recommendations from several methodological frameworks, as no standardised protocol currently exists for this purpose.
Methods. Our protocol incorporates information about the aims and objectives of the scoping review, inclusion criteria, search strategy, data extraction, quality appraisal, data synthesis and plans for dissemination. Funding for this project was approved by Burdett Trust for Nursing in December 2016.
Discussion. Technology to support patient emotional and social wellbeing has seen a rapid growth in recent years and is offered in a variety of formats. However, similar support for nursing staff remains under-researched with no literature review undertaken on this topic to date. This is despite nurses working in emotionally demanding environments which can be socially isolating. The scoping review will map current evidence on the use of technology to
support nursing staff and explore the range, extent and nature of this activity. It will also provide a basis for deciding if a full systematic review would be desirable.
Impact: It is important that the psychological well-being of nurses is seriously addressed as more nurses are now leaving than joining the profession. This is an international concern. High staff turnover has an interpersonal cost and is associated with reduced quality of patient care. Financial implications are also important to consider as healthcare providers employ costly agency staff to address the workforce deficit. Online technology may offer a sustainable and accessible means of providing support for nurses who find it difficult to communicate in person due to time pressures at work
The Impact of Training in Person-Centred Dementia Care and Supervision on Burnout in Nursing Home Nurses: A Mixed Methods Study
No full textBackground: There is significant concern about nurse burnout in nursing homes. There
has been little research to investigate whether training in person-centred care and
supervision can reduce nursing home nurses’ burnout.
Aims: To adapt training to be suitable for nursing home nurses and evaluate the impact
of training and supervision on burnout and related outcomes.
Study Design: Focus groups with nursing home nurses were used to inform adaptation
of the training. Mixed methods were used to evaluate the impact of training and
supervision employing a convergent parallel design, including a Randomised
Controlled Trial with quantitative measures (primary outcome measure: the Maslach
Burnout Inventory) to assess effectiveness and exploration of subjective experience
using qualitative interviews. The findings of the RCT and qualitative interviews were
then compared to determine the convergences and divergences.
Findings: The training was adapted to include content on leadership and stress
management. Hypotheses that the interventions would reduce burnout and impact on
other quantitative outcomes were not supported. Qualitative interviews with nursing
home nurses about training indicated that the nurses reported reduced burnout,
enhanced self-efficacy, reduced isolation, better team working, more informed person centred dementia care and enhanced leadership. Nurses’ views on the impact of
supervision included a range of benefits. There was convergence between quantitative
measurement and subjective experience indicting significant levels of burnout, but
divergence in terms of the impact of training in person-centred care and supervision.
Conclusions: My study demonstrates that burnout is a significant issue for nursing
home nurses in the UK. There was divergence in my findings in terms of the impact of
training in person-centred care and supervision. The hypotheses about training and
supervision having positive impact on burn-out were rejected. However, the qualitative findings suggest that nursing home nurses experienced positive benefits from the
person-centred training and supervision, in particular on their sense of burnout, their
approach to care and leadership skills. Recommendations are made regarding
research, training and policy to address burnout in nursing home nurses.Burdett Charitable Trust of Nursin
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