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1.
Dementia (London) ; 22(7): 1461-1486, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37354084

ABSTRACT

Practitioner understanding of patients' preferences, wishes and needs is essential for personalised health care i.e., focusing on 'what matters' to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples' tendency to downplay or omit details about their troubles and carers' ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners' ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care.


Subject(s)
COVID-19 , Dementia , Humans , Dementia/therapy , Information Sources , Feasibility Studies , Pandemics , Caregivers , Patient Care Team
2.
BJGP Open ; 7(3)2023 Sep.
Article in English | MEDLINE | ID: mdl-37160337

ABSTRACT

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings. METHOD: High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis. CONCLUSION: The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations.

3.
Health Soc Care Community ; 30(6): e4086-e4094, 2022 11.
Article in English | MEDLINE | ID: mdl-35355347

ABSTRACT

Emerging evidence suggests that connecting people to non-medical activities in the community (social prescribing) may relieve pressure on services by promoting autonomy and resilience, thereby improving well-being and self-management of health. This way of working has a long history in the voluntary and community sector but has only recently been widely funded by the National Health Service (NHS) in England and implemented in Primary Care Networks (PCNs). The COVID-19 global pandemic coincided with this new service. There is wide variation in how social prescribing is implemented and scant evidence comparing different delivery models. As embedded researchers within an Integrated Care System in the Southwest of England, we examined the impact of COVID on the implementation of social prescribing in different employing organisations during the period March 2020 to April 2021. Data were collected from observations and field notes recorded during virtual interactions with over 80 social prescribing practitioners and an online survey of 52 social prescribing practitioners and middle managers. We conceptualise social prescribing as a pathway comprising access, engagement and activities, facilitated by workforce and community assets and strategic partnerships. We found that these elements were all impacted by the pandemic, but to different degrees according to the way the service was contracted, whether referrals (access) and approach (engagement) were universal ('open') or targeted ('boundaried') and the extent to which practitioners' roles were protected or shifted towards immediate COVID-specific work. Social prescribers contracted in PCNs were more likely to operate an 'open' model, although boundaries were developing over time. We suggest the presence of an explicit, agreed delivery model (whether 'open' or 'boundaried') might create a more coherent approach less likely to result in practitioner role drift, whilst allowing flexibility to adjust to the pandemic and enhancing practitioner satisfaction and well-being. The potential consequences of different models are examined.


Subject(s)
COVID-19 , Delivery of Health Care, Integrated , Humans , State Medicine , COVID-19/epidemiology , Referral and Consultation , Surveys and Questionnaires
4.
Dementia (London) ; 21(3): 972-994, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35148655

ABSTRACT

BACKGROUND AND PURPOSE: Adults lacking capacity are under-represented in research; therefore, the evidence-base surrounding their support needs is inferior compared to other populations. Involving this group in research is fraught with challenges, including researcher uncertainties about how to carry out capacity judgements. Whilst ethical guidelines and principles provide overarching guidance, there is a lack of detailed guidance and evidence-based training, incorporating practical 'on the ground' strategies and advice on communication practices. Experiences and reflections on research procedures used to gauge and address capacity are under reported, resulting in a lack of shared knowledge within the field. DESIGN: To help address this, we engaged in researcher (co)meta-reflection on the informed capacity judgement procedure for initial consent, within our current, person-centred dementia intervention feasibility study. Our objective was to identify areas to improve our approach, but to also put forward suggestions for wider change within ethical research practice. RESULTS: Findings reveal challenges and facilitators relating to six areas: 'Conducting time sensitive research whilst remaining person-centred and building relationships'; 'Information sharing and supporting communication'; 'Applying the process flexibly'; 'The role of the carer and the consultee process'; 'Judging assent and dissent' and 'Researcher related factors'. We questioned our 'capacity to make capacity judgements' in terms of both our skills and research time constraints. CONCLUSIONS: Based on our experiences, we argue for greater open discussion between researchers, Patient and Public Involvement contributors and Research Ethics Committees at initial project planning stages. We recommend training and guidance focuses on building researcher skills in applying a standard process flexibly, emphasising naturalistic, conversational approaches to capacity judgement. A crucial consideration for funders is how this time-intensive and sensitive work should be factored into bid application templates and funding grants. Learnings from this article have potential to inform evidence-based guidance and training for researchers, consultees, funders, reviewers and ethics committees.


Subject(s)
Dementia , Adult , Communication , Humans , Information Dissemination
5.
BMJ Open ; 10(12): e043331, 2020 12 01.
Article in English | MEDLINE | ID: mdl-33262194

ABSTRACT

INTRODUCTION: Smoking reduction can lead to increased success in quitting. This study aims to determine if a client-focused motivational support package for smoking reduction (and quitting) and increasing (or otherwise using) physical activity (PA) can help smokers who do not wish to quit immediately to reduce the amount they smoke, and ultimately quit. This paper reports the study design and methods. METHODS AND ANALYSIS: A pragmatic, multicentred, parallel, two group, randomised controlled superiority clinical trial, with embedded process evaluation and economics evaluation. Participants who wished to reduce smoking with no immediate plans to quit were randomised 1:1 to receive either (1) tailored individual health trainer face-to-face and/or telephone support to reduce smoking and increase PA as an aid to smoking reduction (intervention) or (2) brief written/electronic advice to reduce or quit smoking (control). Participants in both arms of the trial were also signposted to usual local support for smoking reduction and quitting. The primary outcome measure is 6-month carbon monoxide-confirmed floating prolonged abstinence following participant self-reported quitting on a mailed questionnaire at 3 and 9 months post-baseline. Participants confirmed as abstinent at 9 months will be followed up at 15 months. ETHICS AND DISSEMINATION: Approved by SW Bristol National Health Service Research Committee (17/SW/0223). Dissemination will include publication of findings for the stated outcomes, parallel process evaluation and economic evaluation in peer-reviewed journals. Results will be disseminated to trial participants and healthcare providers. TRIAL REGISTRATION NUMBER: ISRCTN47776579; Pre-results.


Subject(s)
Exercise , Smokers , Smoking Cessation , Humans , Multicenter Studies as Topic , Randomized Controlled Trials as Topic , Smoking , State Medicine
6.
Br Dent J ; 227(2): 137-142, 2019 Jul.
Article in English | MEDLINE | ID: mdl-31350499

ABSTRACT

Introduction Oral disease in very young children is far more common among children in deprived and vulnerable families than among their peer group. Such children are at the highest risk of requiring a general anaesthetic for removal of decayed primary teeth.Aim This study aimed to create new knowledge about how best to promote oral health among a target population, about who very little is established with regard to how to successfully intervene to improve long-term oral health.Method Phase one of the study developed a logic model, and phase two delivered an oral health-promoting intervention by working with the Family Nurse Partnership. The social and empirical acceptability of the intervention was explored, and the attributes needed by people delivering such an intervention were investigated in-depth.Results The thematic analysis of phase one data produced seven key themes which appeared to influence parents' ability and willingness to accept an oral health intervention aimed at their infants. These were: their personal experiences, current oral health knowledge, desire for dental care for their child, the timing of an intervention, their perception of difficulties, family norms and the level of trust developed.Conclusion It is possible to motivate the most vulnerable families to establish behaviours which are conducive to good oral health, and that intervention is feasible and appropriate if a trusting relationship is adopted by the deliverer of the intervention. Families were successful in adopting oral health behaviours and visiting dental services when such circumstances were established.


Subject(s)
Dental Caries , Oral Health , Child , Child, Preschool , Dental Care , Family , Humans , Infant , Parents
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