scholarly journals Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

2019 ◽  
Vol 7 (12) ◽  
pp. 1-198 ◽  
Author(s):  
Kate Gridley ◽  
Fiona Aspinal ◽  
Gillian Parker ◽  
Helen Weatherly ◽  
Rita Faria ◽  
...  

Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Author(s):  
Clarissa Giebel ◽  
Caroline Sutcliffe ◽  
Frances Darlington-Pollock ◽  
Mark A. Green ◽  
Asan Akpan ◽  
...  

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.


2020 ◽  
Author(s):  
David A G Henderson ◽  
Iain Atherton ◽  
Colin McCowan ◽  
Stewart W Mercer ◽  
Nick Bailey

Abstract Background little is known about the relationship between multimorbidity and social care use (also known as long-term care). The aim of this study was to assess the relationship between receipt of formal social care services and multimorbidity. Methods this retrospective data linkage, observational study included all individuals over the age of 65 in the population of Scotland in financial years 2014–15 and 2015–16 (n = 975,265). The main outcome was receipt of social care measured by presence in the Scottish Social Care Survey. Logistic regression models were used to assess the influence of multimorbidity, age, sex and socioeconomic position on the outcome reporting average marginal effects (AME). Findings 93.3% of those receiving social care had multimorbidity, 16.2% of those with multimorbidity received social care compared with 3.7% of those without. The strongest magnitudes of AME for receiving social care were seen for age and multimorbidity (respectively, 50 and 18% increased probability comparing oldest to youngest and most severe multimorbidity to none). A 5.5% increased probability of receiving social care was observed for the most-deprived compared with the least-deprived. Interpretation higher levels of social care receipt are observed in those with increasing age, severe multimorbidity and living in more deprived areas. Multimorbidity does not fully moderate the relationship between social care receipt and either age or deprivation.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
M. P. Pomey ◽  
M. de Guise ◽  
M. Desforges ◽  
K. Bouchard ◽  
C. Vialaron ◽  
...  

Abstract Background Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. Methods/design We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients’ experience of emotional support throughout their care trajectory. Discussion This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.


BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e039939
Author(s):  
Sahdia Parveen ◽  
Sarah Jane Smith ◽  
Cara Sass ◽  
Jan R Oyebode ◽  
Andrea Capstick ◽  
...  

ObjectivesThe aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training.DesignCross-sectional survey study. Data collection occurred in 2017.SettingsHealth and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes.ParticipantsAll health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%).OutcomesKnowledge, attitude and confidence of health and social care staff.ResultsHierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01).ConclusionThe results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.


2021 ◽  
pp. 089976402110014
Author(s):  
Anders M. Bach-Mortensen ◽  
Ani Movsisyan

Social care services are increasingly provisioned in quasi-markets in which for-profit, public, and third sector providers compete for contracts. Existing research has investigated the implications of this development by analyzing ownership variation in latent outcomes such as quality, but little is known about whether ownership predicts variation in more concrete outcomes, such as violation types. To address this research gap, we coded publicly available inspection reports of social care providers regulated by the Care Inspectorate in Scotland and created a novel data set enabling analysis of ownership variation in violations of (a) regulations, and (b) national care standards over an entire inspection year ( n = 4,178). Using negative binomial and logistic regression models, we find that for-profit providers are more likely to violate non-enforceable outcomes (national care standards) relative to other ownership types. We did not identify a statistically significant difference between for-profit and third sector providers with regard to enforceable outcomes (regulations).


2020 ◽  
pp. 030802262097394
Author(s):  
Deborah Bullen ◽  
Channine Clarke

Introduction In response to growing demands on health and social care services there is an emphasis on communities addressing the needs of local populations to improve lives and reduce inequalities. Occupational therapists are responding to these demands by expanding their scope of practice into innovative settings, such as working with refugees, the homeless and residents of nursing homes, and within sport and leisure environments. The benefits of sport are widely acknowledged, and this paper argues that occupational therapists could play a pivotal role in enabling people to participate. Method This qualitative study drew on a phenomenological approach and used interviews and thematic analysis to explore five occupational therapists’ experiences of enabling people to participate in sport. Findings Findings revealed that participants demonstrated the uniqueness of occupational therapy when enabling people to participate in sport and practised according to their professional philosophy. There were opportunities to reach wider communities and promote the value of occupational therapy by collaborating with organisations, but there were also challenges when working outside of traditional settings. Conclusion The study emphasises the unique skills occupational therapists can bring to this setting. It highlights opportunities to expand their practice, to forge new partnerships in sports and leisure environments, and to address the national inactivity crisis.


2018 ◽  
Vol 21 (3/4) ◽  
pp. 108-122
Author(s):  
Patricia Dearnaley ◽  
Joanne E. Smith

Purpose The purpose of this paper is to stimulate a wider debate around the coordination of workforce planning in non-statutory services (in this case, specialist housing for older people or those with long-term health and social care needs, such as learning disabilities). The authors argue that current NHS reforms do not go far enough in that they fail to include specialist housing and its workforce in integration, and by doing so, will be unable to optimise the potential efficiencies and streamlining of service delivery to this group. Design/methodology/approach The paper used exploratory study using existing research and data, enhanced by documentary analysis from industry bodies, regulators and policy think tanks. Findings That to achieve the greatest operational and fiscal impact upon the health care services, priority must be given to improving the efficiency and coordination of services to older people and those requiring nursing homes or registered care across the public and third sectors through the integration of service delivery and workforce planning. Research limitations/implications Whilst generalisable and achievable, the model proposed within the paper cannot be fully tested theoretically and requires further testing the in real health and social care market to evidence its practicality, improved quality of care and financial benefits. Originality/value The paper highlights some potential limitations to the current NHS reforms: by integrating non-statutory services, planned efficiency savings may be optimised and service delivery improved.


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