Browsing by Author "Cousins, Emily"
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Item Open Access Developing and evaluating online COVIDcentric advance care planning training and information resources for nursing staff and family members in nursing homes: the necessary discussions study protocol(Springer, 2021-08-09) Harding, Andrew; Preston, Nancy; Doherty, Julie; Cousins, Emily; Varey, Sandra; McCann, Adrienne; Harrison Dening, Karen; Finucane, Anne; Carter, Gillian; Mitchell, Gary; Brazil, KevinBackground: Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. This study aims to develop and evaluate advance care planning (ACP) COVID-centric online training and information resources for nursing home staff and family members of residents, to improve care at the end of life during a COVID-19 outbreak. Based on the findings we will develop implementation guidelines for nursing homes to ensure wider impact and application during the pandemic and beyond. Methods: The content of the training and information resources will be based on a rapid review of literature and guidance on ACP in the context of COVID-19 and consultation with the study expert reference group. An integrated communications company will then work alongside the research team to design the online training and information resources. To evaluate the resources, we will employ a multiple case study design where a nursing home (defined as an institutional setting in which nursing care is provided to older adults on-site 24 h a day) will be the unit of analysis or ‘case’. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. We will recruit and interview staff and family members from between 6 and 9 nursing homes across Northern Ireland, England and Scotland and gather quantitative data from a feedback survey included in the training and information resources. Discussion: The Necessary Discussions study is very timely given the challenging experiences of nursing homes, their staff, residents and their family members during the COVID-19 pandemic. It meets a key need and addresses an important gap in research and practice. The training and information resources will be ‘COVIDItem Open Access Developing Country-specific Questions about End-of-life Care for Nursing Home Residents with Advanced Dementia using the Nominal Group Technique with Family Caregivers(Elsevier, 2021-07-23) Bavelaar, Laura; Nicula, Maria; Morris, Sophie; Kaasalainen, Sharon; Achterberg, Wilco; Loučka, Martin; Vlckova, Karolina; Thompson, Genevieve; Cornally, Nicola; Hartigan, Irene; Harding, Andrew; Preston, Nancy; Walshe, Catherine; Cousins, Emily; Harrison Dening, Karen; de Vries, Kay; Brazil, Kevin; van der Steen, JennyObjective: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care. Methods: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analysed and compared the QPLs using content analysis. Results: Four to 20 family caregivers per country were involved. QPLs ranged from 15-24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”. Conclusion: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. Practice implications: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.Item Open Access Ethical care during COVID-19 for care home residents with dementia(SAGE Publishing, 2020-12-16) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenThe COVID-19 pandemic has had a devastating impact on care homes in the UK, particularly for those residents living with dementia. The impetus for this paper comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic were derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were: caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, wellbeing, safety and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this paper discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, wellbeing and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and PPE, unclear data and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.Item Open Access Four walls and a garden: Exploring the experiences of families affected by dementia during the COVID-19 pandemic(SAGE, 2021-12-17) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenIntroduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic, and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: “busy life before lockdown”; Isolation: “four walls and a garden”; Living with restrictions: “treading on eggshells”; Discovering positives: “you are in the same boat”; Easing lockdown: “raring to go”; Heightened uncertainty: “things have changed”. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.Item Open Access LGBTQ+ people living with dementia: An under-served population(Mark Allen Healthcare, 2020-10-31) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenLesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) people living with dementia are an under-served population. They are often at greater risk of vulnerability, discrimination, loneliness, health inequalities and poorer health outcomes. This overview offers an introductory summary of some of the challenges and considerations facing LGBTQ+ people living with dementia. Particular themes include living with memory problems, remembering the past, reminiscence, personal relationships and receiving care. The overview also provides a summary of recommendations for improving the experiences and care of LGBTQ+ people living with dementia, which include comprehensive training for health and care professionals, as well as strengthened peer support networks. Areas for future research to fully understand the needs of this under-served population are also suggested.Item Open Access “Like an unbridled horse that runs away with you”: A study of older and disabled people during the COVID-19 pandemic and their use of digital technologies.(Taylor and Francis, 2023-05-31) Clayton, David; de Vries, Kay; Clifton, Andrew; Cousins, Emily; Norton, Wendy; Seims, MelissaThis study explored the uses of digital technologies by older and disabled people who were social distancing and shielding during the early Covid-19 pandemic lockdowns. The study considers the benefits, difficulties, and technical support needs of these groups of people during this time. Using a case study methodology, in-depth interviews were undertaken with 11 older and disabled people recruited from a local digital support service, and their support workers. Five main themes were identified by the research team. These were: technology was a mixed blessing and caused frustration; technology use increased during lockdown; technology supported resilience and contributed to identity through “stimulation, knowledge and friendship”; technology needs to be accessible, and support was required to facilitate technology use. Understanding these experiences will enable policymakers, commissioners, and providers to develop better and more responsive digital support for older and disabled people in the future.Item Open Access Palliative care in Creutzfeldt Jakob Disease: Looking back, thinking ahead(BMJ, 2021-01-22) de Vries, Kay; Cousins, Emily; Harrison Dening, KarenCreutzfeldt Jakob Disease is a rare and fatal neurodegenerative disease for which there is no cure. However, it is difficult to diagnose and is unique in that it is both a genetic and transmissible disease. The disease is characterised by symptoms of a rapidly progressive dementia. Palliation is the only treatment and early diagnosis is an important aspect in relation to gaining speedy access to palliative and end of life care services. People with CJD may be cared for in a diversity of settings including; general hospital wards, neurological units, hospices; care homes, and in their own home. Management of physical and psychosocial symptoms and dealing with family bereavement is complex and challenging. Due to the complexity of the physical symptoms input from clinicians with palliative care expertise is an important consideration. Given transmission risk and the latent incidence of infection in the general population, following the emergence of variant Creutzfeldt Jakob Disease; plus the recent hypothesis of a potential relationship between immune responses to COVID-19 and the acceleration of preclinical or evident neurodegenerative disease, there is a need for renewed interest in research in this field. Over the past 20 years many thousands of articles have been published on CJD. These have been predominately in the medical and science literature and very few publications have addressed the nursing care of persons and families dealing with CJD. There is a need for renewed interest in the management of the disease by supportive and palliative care services.Item Open Access The story of an emerging crisis: the impact of COVID-19 on care home residents with dementia in the UK(Bristol University Press, 2021-11-01) Cousins, Emily; de Vries, Kay; Harrison Dening, KarenThe impact of COVID-19 in UK care homes has been significant: for staff, residents and people with dementia. Given the rapidly changing circumstances, the media, limitations notwithstanding, have reported vital insights from the frontline. A qualitative analysis of news articles across three time points reveals the story of an emerging crisis in UK care homes, beginning with a sole focus on hospital care and resulting in tragically high death rates. This public-facing narrative has potential to: advocate for increased resources in care homes; drive government accountability; highlight improvements for care practices; bear witness to the experiences of a vulnerable population.