scholarly journals Stories from the fourth age: autonomy and the lives of older care home residents

2020 ◽  
pp. 1-14
Author(s):  
Lucy V. Pocock ◽  
Fiona MacKichan ◽  
Francesca Deibel ◽  
Anna Mills ◽  
Lesley Wye
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Narrative Analysis ◽  
Care Home ◽  
Death And Dying ◽  
Care Homes ◽  
Life And Death ◽  
Care Home Resident ◽  
Loss Of Autonomy ◽  
Privately Owned

Abstract Transition to a care home often follows a hospital admission and can be distressing. Care home settings play an important role in the care of many people at the end of life. This longitudinal study employed a narrative approach, aiming to explore the perspectives of older care home residents on transitions to, and life and death within, care homes. Five participants, aged 85 years and over, were recruited from two privately owned care homes in the South-West of England. All participants had a diagnosis of an advanced progressive condition (excluding advanced dementia), or were thought to be frail. Longitudinal interviews (19 in total) were conducted over a ten-month period. A structural narrative analysis was performed and participants’ narratives are presented under three headings, with one participant's story chosen to illustrate each narrative type: ‘becoming a care home resident’, ‘living in a care home’ and ‘death and dying’. Findings revealed that care home residents experience a loss of autonomy and a lack of agency; they are often excluded from decision-making. Older care home residents have few choices with regard to care at the end of life. Further work is required to improve transition into care homes, including support and advocacy during decision-making, which often takes place in hospitals at a time of crisis.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

scholarly journals Genomic epidemiology of COVID-19 in care homes in the east of England

eLife ◽  
2021 ◽  
Vol 10 ◽  
Author(s):  
William L Hamilton ◽  
Gerry Tonkin-Hill ◽  
Emily R Smith ◽  
Dinesh Aggarwal ◽  
Charlotte J Houldcroft ◽  
...  
Keyword(s):  
Infection Control ◽  
Older People ◽  
Severe Disease ◽  
Care Home ◽  
Genomic Analysis ◽  
Viral Transmission ◽  
Care Homes ◽  
Temporal Data ◽  
Genomic Epidemiology ◽  
Care Home Resident

COVID-19 poses a major challenge to care homes, as SARS-CoV-2 is readily transmitted and causes disproportionately severe disease in older people. Here, 1167 residents from 337 care homes were identified from a dataset of 6600 COVID-19 cases from the East of England. Older age and being a care home resident were associated with increased mortality. SARS-CoV-2 genomes were available for 700 residents from 292 care homes. By integrating genomic and temporal data, 409 viral clusters within the 292 homes were identified, indicating two different patterns – outbreaks among care home residents and independent introductions with limited onward transmission. Approximately 70% of residents in the genomic analysis were admitted to hospital during the study, providing extensive opportunities for transmission between care homes and hospitals. Limiting viral transmission within care homes should be a key target for infection control to reduce COVID-19 mortality in this population.

scholarly journals GPs’ involvement to improve care quality in care homes in the UK: a realist review

2021 ◽  
Vol 9 (20) ◽  
pp. 1-76
Author(s):  
Neil H Chadborn ◽  
Reena Devi ◽  
Christopher Williams ◽  
Kathleen Sartain ◽  
Claire Goodman ◽  
...  
Keyword(s):  
Quality Improvement ◽  
General Practitioner ◽  
Health Services ◽  
End Of Life ◽  
General Practitioners ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
The Uk

Background Organising health-care services for residents living in care homes is an important area of development in the UK and elsewhere. Medical care is provided by general practitioners in the UK, and the unique arrangement of the NHS means that general practitioners are also gatekeepers to other health services. Despite recent focus on improving health care for residents, there is a lack of knowledge about the role of general practitioners. Objectives First, to review reports of research and quality improvement (or similar change management) in care homes to explore how general practitioners have been involved. Second, to develop programme theories explaining the role of general practitioners in improvement initiatives and outcomes. Design A realist review was selected to address the complexity of integration of general practice and care homes. Setting Care homes for older people in the UK, including residential and nursing homes. Participants The focus of the literature review was the general practitioner, along with care home staff and other members of multidisciplinary teams. Alongside the literature, we interviewed general practitioners and held consultations with a Context Expert Group, including a care home representative. Interventions The primary search did not specify interventions, but captured the range of interventions reported. Secondary searches focused on medication review and end-of-life care because these interventions have described general practitioner involvement. Outcomes We sought to capture processes or indicators of good-quality care. Data sources Sources were academic databases [including MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature, PsycInfo® (American Psychological Association, Washington, DC, USA), Web of Science™ (Clarivate Analytics, Philadelphia, PA, USA) and Cochrane Collaboration] and grey literature using Google Scholar (Google Inc., Mountain View, CA, USA). Methods Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) guidelines were followed, comprising literature scoping, interviews with general practitioners, iterative searches of academic databases and grey literature, and synthesis and development of overarching programme theories. Results Scoping indicated the distinctiveness of the health and care system in UK and, because quality improvement is context dependent, we decided to focus on UK studies because of potential problems in synthesising across diverse systems. Searches identified 73 articles, of which 43 were excluded. To summarise analysis, programme theory 1 was ‘negotiated working with general practitioners’ where other members of the multidisciplinary team led initiatives and general practitioners provided support with the parts of improvement where their skills as primary care doctors were specifically required. Negotiation enabled matching of the diverse ways of working of general practitioners with diverse care home organisations. We found evidence that this could result in improvements in prescribing and end-of-life care for residents. Programme theory 2 included national or regional programmes that included clearly specified roles for general practitioners. This provided clarity of expectation, but the role that general practitioners actually played in delivery was not clear. Limitations One reviewer screened all search results, but two reviewers conducted selection and data extraction steps. Conclusions If local quality improvement initiatives were flexible, then they could be used to negotiate to build a trusting relationship with general practitioners, with evidence from specific examples, and this could improve prescribing and end-of-life care for residents. Larger improvement programmes aimed to define working patterns and build suitable capacity in care homes, but there was little evidence about the extent of local general practitioner involvement. Future work Future work should describe the specific role, capacity and expertise of general practitioners, as well as the diversity of relationships between general practitioners and care homes. Study registration This study is registered as PROSPERO CRD42019137090. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 20. See the NIHR Journals Library website for further project information.

Implementation of eHealth to support assessment and decision-making for residents with dementia in long-term care: systematic review (Preprint)

2021 ◽  
Author(s):  
Juliet Gillam ◽  
Nathan Davies ◽  
Jesutofunmi Aworinde ◽  
Emel Yorganci ◽  
Janet E Anderson ◽  
...  
Keyword(s):  
Decision Making ◽  
Long Term Care ◽  
Care Home ◽  
End Users ◽  
Care Homes ◽  
Successful Implementation ◽  
Key Factors ◽  
Term Care ◽  
Care Assessment

BACKGROUND As dementia progresses, symptoms and concerns increase causing considerable distress for the person and caregivers. Integration of care between care homes and healthcare services is vital to meet increasing care needs and maintain quality of life. However, access to high-quality healthcare is inequitable. eHealth offers a potential solution, by supporting remote specialist input on care processes like clinical assessment and decision-making, and streamlining care on site. How best to implement eHealth in the care home setting is unclear. OBJECTIVE This review aimed to identify key factors that influence implementation of eHealth for people living with dementia in long-term care. METHODS A systematic search of EMBASE, PsychInfo, MEDLINE and CINHAL was conducted to identify studies published between 2000-2020. Studies were eligible if they focused on eHealth interventions to improve treatment and care assessment or decision-making for residents with dementia in care homes. Data were thematically analysed and deductively mapped onto the six constructs of the adapted Consolidated Framework for Implementation Research (CFIR). Results are presented as a narrative synthesis. RESULTS 29 studies were included, focusing on a variety of eHealth interventions including remote video-consultations and clinical decision support tools. Key factors which influenced eHealth implementation were identified across all six constructs of the CFIR. Most concerned the Inner Setting construct about requirements for implementation in the care home, such as providing a conducive learning climate, engaged leadership and sufficient training and resources. Four novel subconstructs were identified to inform implementation requirements to meet resident needs and engage end-users. CONCLUSIONS Implementing eHealth in care homes for people with dementia is multi-factorial and complex, involving interaction between the resident, staff and organisation. Application of the CFIR for care homes requires an emphasis on the needs of residents and the engagement of end users in the implementation process. A novel conceptual model of the key factors was developed, and translated into 18 practical recommendations on implementation of eHealth in long-term care to guide implementers or innovators in care homes. The policy imperative for integrated health and social care demands successful implementation of eHealth, to maximise uptake and drive improvements.

End-of-life discussions in residential care homes improves symptom control: a national register study

2021 ◽  
pp. bmjspcare-2021-002983
Author(s):  
Sofia Andersson ◽  
Lisa Martinsson ◽  
Carl Johan Fürst ◽  
Margareta Brännström
Keyword(s):  
End Of Life ◽  
Residential Care ◽  
Care Home ◽  
Symptom Relief ◽  
Symptom Control ◽  
Discussion Group ◽  
Care Homes ◽  
Multivariate Logistic Regression ◽  
Care Facilities ◽  
Prevalence Of Pain

BackgroundIn Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.ObjectiveThe aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.MethodsAll expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.ResultsThe EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.ConclusionThe results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.

Re-conceptualising the status of residents in a care home: older people wanting to ‘live with care’

2014 ◽  
Vol 35 (8) ◽  
pp. 1587-1613 ◽  
Author(s):  
GLENDA COOK ◽  
JULIANA THOMPSON ◽  
JAN REED
Keyword(s):  
Narrative Analysis ◽  
Care Home ◽  
Care Homes ◽  
Residential Status ◽  
Care Home Staff ◽  
Human Needs ◽  
Meaningful Activity ◽  
The Status ◽  
Status Of Care ◽  
And Control

ABSTRACTThe construction of a meaningful life depends upon satisfying ‘fundamental human needs’. These are broadly categorised as: physical, social and self-actualisation needs that every human experiences. Some fundamental human needs satisfiers, such as ‘home’, are synergic, addressing more than one need. For an older person, the move to a care home compromises their ontological security (through disruption of identification with place and control over environment) that one's own ‘home’ provides. This paper explores the complex issues surrounding the residential status of care home residents in terms of fundamental human needs. The methodology utilised was hermeneutic phenomenology. Eight older residents participated in the study, and each resident was interviewed up to eight times over a period of six months. Narrative analysis was used to interpret how participants viewed their experiences and environment. Five themes emerged from the narratives that collectively demonstrate that residents wanted their residential status to involve ‘living with care’ rather than ‘existing in care’. The five themes were: ‘caring for oneself/being cared for’; ‘being in control/losing control’; ‘relating to others/putting up with others’; ‘active choosers and users of space/occupying space’ and ‘engaging in meaningful activity/lacking meaningful activity’. This study indicates that if care homes are to achieve synergic qualities so residents are able to regard care homes as ‘home’, then care home staff may need to be more focused on recognising, acknowledging and supporting residents' aspirations regarding their future lives, and their status as residents.

Death and Dying

2018 ◽  
pp. 203-226
Author(s):  
Philip A. Mackowiak
Keyword(s):  
End Of Life ◽  
Old Age ◽  
Death And Dying ◽  
Assisted Dying ◽  
Life And Death ◽  
History Of

Chapter 9 (“Death and Dying”) concerns a number of issues related to the end of life: the age-old question of what happens to one after death, the litany of problems encountered in old age, the mixed benefits of defying death, and the long history of assisted dying. These weighty issues and others are addressed in a series of compelling works that celebrate dying in the presence of friends and family, both glorify and demonize death in battle, and question the value of ICU care that suspends patients in a web of tubes and wires simply to create a kind of purgatory between life and death.

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