scholarly journals What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions

2020 ◽  
Vol 49 (4) ◽  
pp. 664-671 ◽  
Author(s):  
Siobhan T Reilly ◽  
Andrew J E Harding ◽  
Hazel Morbey ◽  
Faraz Ahmed ◽  
Paula R Williamson ◽  
...  
Keyword(s):  
Mixed Methods Research ◽  
Social Care ◽  
Outcome Measurement ◽  
Core Outcome Set ◽  
Consensus Meeting ◽  
Core Outcome ◽  
Delphi Approach ◽  
People With Dementia ◽  
Health And Social Care ◽  
At Home

Abstract Objectives inconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method we used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion we identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions are most likely to be valued highly by people living with dementia. Trial registration The study is registered on the COMET initiative database.

scholarly journals Development of a core outcome set for the evaluation of interventions to enhance trial participation decisions on behalf of adults who lack capacity to consent: a mixed methods study (COnSiDER Study)

2021 ◽  
Author(s):  
Victoria Shepherd ◽  
Fiona Wood ◽  
Michael Robling ◽  
Elizabeth Randell ◽  
Kerenza Hood
Keyword(s):  
Outcome Measurement ◽  
Core Outcome Set ◽  
Consensus Meeting ◽  
Delphi Survey ◽  
Additional Patient ◽  
Trial Participation ◽  
Core Outcome ◽  
Capacity To Consent ◽  
Outcome Set ◽  
Participation Decisions

Abstract BackgroundTrials involving adults who lack capacity to provide consent for themselves rely on proxy or surrogate decision-makers, usually a family member, to make decisions about participation. Following decades of innovations to improve informed consent in trials, the first interventions to enhance proxy decisions about trial participation are now being developed. However, a lack of standardised outcome measurement in the evaluation of these novel interventions will impede comparisons between their effectiveness. The aim of this study was to establish an agreed standardised core outcome set (COS) for use when evaluating interventions to improve proxy decisions about trial participation on behalf of adults who lack capacity to consent.MethodsWe used established methods to develop the COS including a consensus study with key stakeholder groups comprising those who will use the COS in research (researchers and healthcare professionals) and patients or their representatives. Following a scoping review to identify candidate items, we used a modified two-round Delphi survey to achieve consensus on core outcomes, with equivocal items taken to a consensus meeting for discussion. The COS was finalised following an online consensus meeting in October 2020.ResultsA total of 28 UK stakeholders (5 researchers, 10 trialists, 3 patient/family representatives, 7 recruiters and 3 advisors/approvers) participated in the online Delphi survey to rank candidate items. Items were broadly grouped into three categories: how family members make decisions, their experiences of making decisions, and the personal aspects that influence the decision. Following the Delphi survey, 27 items were included and ten items exhibited no consensus which required discussion at the consensus meeting. Sixteen participants attended the meeting, including additional patient/family representatives invited to increase representation from this key group. We reached consensus for the inclusion of 28 outcome items, including one selected at the consensus meeting.ConclusionsThe study identified outcomes that should be measured as a minimum in all evaluations of interventions to enhance proxy decisions about trials. Further work is required to identify appropriate measures and timing of outcome measurement. Enhancing the quality of proxy decisions will help improve trial participation decisions for these vulnerable groups. Trial registration: The study is registered on the COMET database (https://www.comet-initiative.org/Studies/Details/1409)

scholarly journals The effective ingredients of social support at home for people with dementia: a literature review

2017 ◽  
Vol 25 (2) ◽  
pp. 110-119
Author(s):  
Elaine Argyle ◽  
Tony Kelly ◽  
John Gladman ◽  
Rob Jones
Keyword(s):  
Social Support ◽  
Social Care ◽  
Good Practice ◽  
Relevant Literature ◽  
Optimal Timing ◽  
Content Type ◽  
People With Dementia ◽  
Health And Social Care ◽  
Search And Selection ◽  
At Home

Purpose Recent years have seen an increasing reliance on social support at home for people with dementia and the advocacy of a person centred and integrated approach in its provision. However, little is known about the effective ingredients of this support and how they differ from more generic or health-based services. The purpose of this paper is to explore the existing evidence base. Design/methodology/approach A review of relevant literature was carried out, combining a systematic search and selection of articles with a narrative analysis. Findings The review identified 14 relevant studies of varying research designs which yielded conflicting findings with regard to the optimal timing of interventions and their overall impact. This highlights the problems of review and generalisability when attempting to compare findings of research in this area. This was exacerbated by the blurred divide between health and social care and ambiguities in the meaning of the latter. Research limitations/implications This methodological heterogeneity demonstrates the need for consistency in research approaches if comparisons are to be made. Further questions include the precise components that distinguish social care from health care, the optimal timing for the introduction of this care and whether adherence to good practice in this area can be linked to cost effectiveness. Originality/value The review identifies relevant issues in need of further investigation and tentative themes emerging from the literature which suggest the utility of an adequately resourced, integrated and responsive approach to intervention.

scholarly journals 305 - What happens before, during and after crisis for someone with dementia living at home

2020 ◽  
Vol 32 (S1) ◽  
pp. 62-63
Author(s):  
Sabarigirivasan Muthukrishnan ◽  
Jane Hopkinson ◽  
Kate Hydon ◽  
Lucy Young ◽  
Cristie Howells
Keyword(s):  
Hospital Admission ◽  
Social Care ◽  
Dementia Care ◽  
Home Treatment ◽  
List Type ◽  
Crisis Resolution ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia ◽  
At Home

Background:Best practice in dementia care is support in the home. Yet, crisis is common and can result in hospital admission. Home-treatment of crisis is an alternative to hospital admission that can have better outcomes and is the preference of people living with dementia.Purpose:To report an investigation of the management of crisis for people with dementia living at home and managed by a Home Treatment Crisis Team.Objective:To identify critical factors for successful resolution of crisis and avoidance of hospital admissionMethods:The research was mixed-methods case study design. It was an in depth investigation of what happens during crisis in people with dementia and how it is managed by a home treatment crisis team to resolution and outcome at six weeks and six months. Methods were observation of the management of crisis in the home setting for 15 people with dementia (max 3 per person, total 41 observations), interviews with people with dementia (n=5), carers (n=13), and 14 professionals (range 1 to 6 per person, total 29), a focus group with professionals (n=9) and extraction from medical records of demographics and medical history.The analysis focused on the identification of key treatments, behaviours, education and context important for home treatment to prevent hospital admission.Findings:The study recruited 15 of the 88 accepted referrals to the service for management of a crisis in a person with dementia.Factors key for crisis resolution were a systems approach with embedded respect for personhood,attention to carer needs independently of the person with dementia,review and monitoring of the effect of medications,awareness and promotion of potential benefits with treatment at home,education of the health and social care workforce in dementia care, local availability of respite and other social care services.The Home Treatment Crisis Team created a ‘Safe Dementia Space’ for the person with dementia in crisis. In the first instance, this was immediate but temporary with on-going assessment and intervention until negotiated permanent support was in place coproduced and agreed by stakeholders to be a sustainable dementia space with acceptable risk of harm to the person with dementia or others. The approach enabled avoidance of hospital admission in more than 80% of referrals.Conclusion:This is the first study to collect data during crisis at home for people with dementia and to investigate process and management. It reveals the Home Treatment Crisis Team created sustainable ‘Safe Dementia Space’ to enable the person with dementia to continue to live in the community during and after crisis, thus avoiding hospital admission. The identified key components of the management approach for crisis resolution are important considerations in the design and delivery of home treatment services for people with dementia in the UK and beyond.

scholarly journals Caregiver-Centered Care Health Workforce Competencies: Developing Consistent Support for Family Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 15-15
Author(s):  
Jasneet Parmar ◽  
Sharon Anderson ◽  
Lisa Poole ◽  
Wendy Duggleby ◽  
Jayna Holyroyd-Leduc ◽  
...  
Keyword(s):  
Health System ◽  
Family Caregivers ◽  
Health Providers ◽  
Care Providers ◽  
Modified Delphi ◽  
Healthcare Settings ◽  
Delphi Approach ◽  
People With Dementia ◽  
Health And Social Care ◽  
Centered Care

Abstract Family caregivers [FCGs] are the backbone of the health system. They provide over 80% of the care for people with dementia, chronic illnesses and impairments. Despite evidence of their contributions and consequences of caregiving, support for FCGs has not been a health system priority. Education to prepare health providers to effectively identify, engage, assess, and support FCGs throughout the care trajectory is an innovative approach in addressing inconsistent system of supports for FCGs. We report on development and validation of the Caregiver-Centered Care Competency Framework to help with curricular design and subsequent evaluation of effectiveness of care providers working within healthcare settings to engage and support FCGs. We used a three round modified Delphi approach. An expert panel of 42 international, national, and provincial stakeholders agreed to participate. In the first 2 rounds, multi-level, interdisciplinary participants, rated the indicators in terms of importance and relevance. In the 3rd round consensus meeting, participants validated the six competency domains, including indicators in small group sessions. Thirty-four experts (81%) participated in the round 1, 36 (85.7%) in round 2, and 42 people (100%) in round 3. There was stable consensus across all three rounds, 96.07% of participants rated the indicators as essential or important (Round 1, 95.81%; Round 2, 94.15; Round 3, 98.23%). FCG research has been primarily focussed on educating FCGs to provide care. These competencies will shape the design of educational curricula and interdisciplinary training programs aimed at supporting the health and social care workforce to provide caregiver-centered care.

scholarly journals Seeing the collective: family arrangements for care at home for older people with dementia

2018 ◽  
Vol 39 (06) ◽  
pp. 1200-1218 ◽  
Author(s):  
CHRISTINE CECI ◽  
HOLLY SYMONDS BROWN ◽  
MARY ELLEN PURKIS
Keyword(s):  
Family Care ◽  
High Volume ◽  
Ethnographic Study ◽  
Family Carers ◽  
Care Giving ◽  
People With Dementia ◽  
Home Based ◽  
Health And Social Care ◽  
Care At Home ◽  
At Home

ABSTRACTWith the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these.

scholarly journals Mental wellbeing in doctors: the measure matters! development of a core outcome set for measuring wellbeing in doctors

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S235-S236
Author(s):  
David Baldwin ◽  
Aimee O'Neill ◽  
Julia Sinclair ◽  
Gemma Simons
Keyword(s):  
Health Education ◽  
Delphi Study ◽  
Research Policy ◽  
Core Outcome Set ◽  
Care Quality ◽  
Mental Wellbeing ◽  
Medical Council ◽  
Core Outcome ◽  
Outcome Set ◽  
Health And Social Care

AimsTo achieve a consensus Core Outcome Set for measuring mental wellbeing in doctors.Hypothesis: A minimum set of valid, reliable and practical wellbeing measures is needed for doctors.BackgroundThe importance of doctors’ mental wellbeing to everyone using Health Care is highlighted by the levels of burnout reported in doctors around the world. In 2019 a number of UK policy documents made recommendations for the wellbeing of doctors, but how those wellbeing interventions are evaluated needs to be defined. Core Outcome Sets are increasingly being used in medicine to prevent waste in research, by recommending the inclusion of a minimum set of valid, reliable and practical measures. An operational definition and Core Outcome Set for wellbeing in doctors is needed to meaningfully progress the work in this field.MethodThe Centre for Workforce Wellbeing (C4WW), a collaboration between the University of Southampton and Health Education England, was created to support research into the nature, assessment and enhancement of wellbeing in physicians. A Systematic Review of wellbeing measures used in doctors and the robustness of those measures, along with surveys of 250 UK doctors of all grades and specialities and patient and public involvement is informing what a core outcome set could be. A Delphi Study among 37 UK experts has been initiated to establish the consensus Core Outcome Set.ResultPublication of research into doctors’ wellbeing is growing internationally. In the UK alone data are being captured by multiple national organisations including: the Care Quality Commission, General Medical Council, British Medical Association and the Royal Colleges. Health and Social Care Organisations are, therefore, keen to “do something” and are spending money on wellbeing interventions with little, or no, evidence base and a lack of appropriate, comparable evaluation. A Core Outcome Set for measuring wellbeing in doctors is ethically required to reduce waste, to replace burnout measures and to refine wellbeing interventions.ConclusionWellbeing measures that actually measure wellbeing, and not burnout, which are validated, reliable and practical, are needed to inform local organisational, national government and international research policy. An absence of burnout does not equate to wellbeing. The focus of measurement needs to shift to capture in what contexts we thrive, not just survive. If everyone used the same Core Outcome Set to measure mental wellbeing, direct comparisons could be made, and money invested, in creating infrastructure, processes and cultures that really work.Health Education England funded PhD.

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