Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer ...palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia.
Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia.
The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background Most people want to remain at home as they age. Ageing in place - remaining at home and connected to the community - is a national and international policy priority; however, to better ...understand how policy might be implemented, a more nuanced understanding is required about older adults' lived experiences of ageing in place, especially the experiences of those aged 80 and above. Objective To describe and explore the social processes which enable ageing in place from the perspective of community-dwelling older people (80+). Methods Forty-six respondents (80-100+ years) participated in the first wave of a longitudinal qualitative study set in North East England. Semi-structured interviews were conducted in participants' homes between June 2022 and January 2023. Interviews were analysed using reflexive thematic analysis. Results Participants positioned their homes as a place of freedom and as the antithesis of a 'care home'. Remaining in place was important for all participants; a key priority for them was to remain physically active to enable this. However, many participants faced significant hurdles to remaining in place. These were primarily related to health and mobility issues. Some participants were able to overcome such barriers by drawing on financial resources and available social networks. Conclusion The home is central to understanding older peoples' (80+) experiences of ageing. In a socio-political context which promotes ageing in place, the social factors shaping experiences of ageing in place must be considered. This involves attending to the challenges of later life, particularly health and especially mobility and physical function. Currently, those with resources (social and economic) are better equipped to respond to such challenges, thus potentially exacerbating widening inequalities in ageing. By foregrounding the perspectives of those ageing in place alongside social factors shaping their experiences, our study has important implications for policy and health and social care. We show that a more equitable allocation of resources is vital to fulfil the ageing in place policy agenda. Furthermore, we highlight a need to recognise commitments to ageing in place displayed by people aged 80 and above, especially when remaining in place becomes difficult to achieve. Keywords: Ageing in place, Very old, Oldest old, 80+, Home, Economic resources, Social connections, Qualitative research
People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those ...with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.
The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.
Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.
This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.
Background:
The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and ...support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all.
Methods:
This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis.
Results:
Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management.
Conclusions:
This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.
Background
In the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer.
Objective
The overall aim of this programme was to support ...professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families.
Design
The Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers (
n
= 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, we assessed the feasibility and acceptability of recruitment and retention, outcome measures and our intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public (
n
= 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national sample of service commissioners (
n
= 20).
Setting
The workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited; two received the intervention and two provided usual care.
Results
Currently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Examples of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public.
Limitations
The biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both individuals and systems.
Conclusions
Although the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care; however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an individual and a systems level.
Future work
There is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently.
Trial registration
Current Controlled Trials ISRCTN21390601.
Funding
This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in
Programme Grants for Applied Research
, Vol. 8, No. 8. See the NIHR Journals Library website for further project information.
After the major evolutionary shift from aquatic to terrestrial environments, many vertebrates retained the ability to swim, and some even became secondarily aquatic. The differing constraints of ...terrestrial and aquatic environments have shaped the evolution of specific morphologies and kinematics. Aquatic locomotion either uses undulations of the body and tail, paddling of the limbs or both simultaneously. Despite many studies on swimming in fishes, little research exists on swimming in tetrapods with sprawling postures, such as lizards. Most lizards have retained the ability to swim, and some are semi-aquatic. Here we present a comparative study of 28 lizard species and one snake, in which we quantified swimming performance and kinematics as well as the impact of morphology. We found that velocity, tail wave velocity, and thrust efficiency were marginally impacted by habitat use and that thrust efficiency was impacted by clade. Lateral compression of the tail decreased velocity and Froude number, and relatively long tail decreased velocity. We also found that a greater frontal head area was associated with a greater tail wave velocity but lower thrust efficiency. This suggests that morphological adaptations are important for propulsive efficacy and for facilitating drag reduction. Velocity was primarily modulated by increasing undulatory wavelength and frequency, while amplitude had little effect. Increased Froude number was associated with increased wavelength and frequency but not amplitude, and thrust efficiency was only significantly affected by wavelength. When lizards paddled with their limbs, amplitude and frequency increased, but performance did not. Thus, it is evident that undulatory kinematics vary with appendicular kinematics. Amplitude of undulations along the body decreased from the head to the pectoral girdle and then increased to the tail for all lizards, while amplitude simply increased posteriorly from the head in the snake. This suggests that amplitude along the body may be constrained in lizards either by morphological or hydrodynamic limitations.
This study explored the lived experiences of four bereaved parents. I used thematic analysis to understand participants’ experiences of successful coping and support within their relationships. ...In-depth, semi-structured interviews were conducted. Twelve themes emerged: parent grief experiences and impacts, grieving secondary losses, continuing connections with their lost child, acceptance of loss and of life, redefining sense of self in parenthood, experiences of successful coping as an individual, experiences of successful coping as a couple, experiences of support from the community, connecting with other bereaved parents, lack of understanding of parent grief experiences at a societal level, mustering the strength to advocate for themselves and educate others, and unique challenges related to “out-of-order” deaths. The findings suggested that despite multiple external challenges, various internal processes and external aspects contributed to the successful coping and experiences of relational support of the participants. Implications for counsellors included a need for better knowledge and understanding of the unique experiences of bereaved parents. This thesis includes three manuscripts. The first is intended for a scholarly audience and is focused on the methodology and findings, with a short discussion of implications for counsellors. The second is intended for practising counsellors and offers a more in-depth discussion of implications for counsellors working with this population, including suggested actions and resources. The third manuscript is also intended for a wider audience and offers a summary of the main findings.
Background:
In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been ...reported, little is known about the perspectives of people with dementia and family carers.
Aim:
To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care.
Design:
Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed.
Setting/participants:
Participants comprised people with early stage dementia, living at home in the north-east of England (n = 11); and current and bereaved carers (n = 25) from six services providing end-of-life care in England.
Findings:
Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making.
Conclusion:
Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.
Background:
People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care.
Aim:
To explore palliative care experiences of ...people of African and Caribbean descent during and immediately prior to the pandemic.
Design:
Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with an expert patient and public advisory group.
Setting/participants:
Twenty-six bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England, recruited using social media, community networks and direct advertising to over 150 organisations.
Results:
Three themes were identified: Representation: Participants did not see themselves reflected in the palliative care services and did not expect their needs to be understood. Mistrust of the healthcare system and perceptions of racism were common and led to anticipation of inequitable care. Personalisation: Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services not offered to all. Awareness and education: Professionals felt they lacked the knowledge to provide care to diverse communities, but were reluctant to ask, due to fear of making mistakes. Inequitable access to services was exacerbated by, but not unique to, the pandemic. Participants recommended raising awareness of palliative services, building professional competence in culturally-sensitive care, and greater ethnic diversity within services.
Conclusions:
Person-centred, culturally-competent palliative care is not the norm for people of African and Caribbean descent. Expectations of inequitable care are widespread. Sustained action on multiple fronts is needed.
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