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Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

ABSTRACT: BACKGROUND:People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. OBJECTIVE:To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. SETTING AND PARTICIPANTS:Consultations took place at four divergent sites across Europe, involving twenty-five people with dementia from nine European countries. METHODS:The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. RESULTS:The results suggested that people with dementia wish to participate in interventions that enhance their well-being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. DISCUSSION AND CONCLUSIONS:Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement.

SUBMITTER: Oksnebjerg L

PROVIDER: S-EPMC6250864 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

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Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

Øksnebjerg Laila L Diaz-Ponce Ana A Gove Dianne D Moniz-Cook Esme E Mountain Gail G Chattat Rabih R Woods Bob B

Health expectations : an international journal of public participation in health care and health policy 20180619 6

<h4>Background</h4>People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dement ...[more]

PMID: 29920881

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Project description:BackgroundPhysical activity is important to health and wellbeing. People with dementia are less physically active than their cognitively healthy counterparts. Reasons for this are multifaceted, and are thought to be social, psychological, and physiological. People with dementia often use services such as home care, day care centres and nursing home, and according to the stage of disease they are less or more dependent on other people to take part in activities. To develop appropriate services to this patient group, their needs and preferences regarding physical activity must be recognized. The aim of the study was therefore to provide insight into experiences with physical activity in people with dementia.MethodsThe current study is part of a larger research project on needs in people with dementia. The main project included qualitative semi-structured interviews with 35 persons with dementia. 27 of the participants talked about their experience with physical activity. In the current study, the relevant findings on this theme were analysed separately. A phenomenological hermeneutic research design was applied.ResultsThe analysis revealed three main categories regarding experiences with physical activity. To be physically active provided positive experiences such as feelings of mastering and post-exercise euphoria. To be physically active was meaningful. The daily walk was an important routine to many, and it gave meaningful content to the day. Keeping up with activities confirmed identity. Lastly, to be active was perceived as challenging. Participants described different barriers to being physically active such as a decline of physical function, lack of motivation and being dependent on others to go out.ConclusionsMany of the participants expressed that being physically active was important to them. It is essential that informal and formal carers are aware of the role physical activity plays in the lives of many people with dementia, so that appropriate measures can be taken to assure continued active living in order to preserve health and quality of life.

Project description:BackgroundPerson-centred care is widely recognised as important for helping people with dementia maintain a sense of self and purpose in life - especially for those living in care facilities. Despite this, most care practices still adopt a medical approach in which physical needs are prioritized over psychosocial well-being. Addressing the need to find ways of promoting person-centred approaches in care, this study explored care professionals' reflections on a novel, technological intervention (SENSE-GARDEN) that combines multisensory stimuli and digital media to create personalized environments for people with dementia. The aim of this study was to explore the experiences of care professionals who had used SENSE-GARDEN for approximately 1 year.MethodsThree care homes in Norway, Belgium, and Portugal and 1 hospital in Romania used the SENSE-GARDEN with residents/patients with moderate to severe dementia over the course of 1 year. Qualitative data - including observations and interviews with 2 care professionals - were collected at the beginning of the study period from the Norwegian care home to explore initial impressions of the new SENSE-GARDEN room. At the end of the study period, 8 care professionals across the 4 facilities were interviewed for an in-depth exploration of their experiences. The two sets of data were analysed separately through reflexive thematic analysis.ResultsAt the beginning of the study period, the staffs' focus was mainly on the novelty of the new SENSE-GARDEN room and how it provided opportunities for meaningful experiences. Post-intervention, the care professionals provided reflective accounts on how care could be delivered in alternative ways to standard practice. The themes generated from the post-intervention interviews were: "shifting focus onto personalized care", "building and fostering relationships", and "continuous discoveries". Through delivering person-centred care, the professionals reported a sense of purpose and achievement in their work.ConclusionsProfessionals from care facilities across 4 different countries highlighted the value of interventions such as SENSE-GARDEN as a way of creating opportunities to better know people with dementia. Thus, they experienced improved relationships and greater job satisfaction. However, delivering person-centred interventions is time-consuming, and future research should evaluate the feasibility of sustaining them on a long-term basis.

Project description:BACKGROUND:It is widely recognised that mental health policies should be developed in consultation with those tasked with their implementation and the users affected by them. In the South African legislative context public participation in policymaking is assumed, with little guidance on how to conduct consultation processes, nor how to use consultation inputs in policy decisions. METHODS:The South African Mental Health Policy Framework and Strategic Plan was adopted in 2013 after an extensive consultation process. Focussing on the 2012 provincial and national consultation summit, this case-study conducted key informant interviews and undertook documentary analysis to explore the process through which consultation inputs were-or were not-transferred to inform this policy. Between 2013 and 2016 seven interviews were conducted, and 11 documents (policy drafts and summit outputs) and transcripts of 23 audio-recorded sessions from the national summit were analysed. RESULTS:Findings revealed that no substantive changes were made to the mental health policy following the consultation summits. There do not seem to have been systematic processes for facilitating and capturing knowledge inputs, or for transferring these inputs between provincial and national levels. There was also no further consultation regarding priorities identified for implementation prior to finalisation of the policy, with participants highlighting concerns about policy implementation at local levels as a result. This represents a lost opportunity for greater involvement of service users in policy development. CONCLUSIONS:Together with poor service-user representation, the format of the consultation process limited participant interaction and the possibility for engagement with, or uptake of, more experiential forms of knowledge. Several procedural elements were found to limit the elicitation and transference of consultation contributions for uptake into policy. Recommendations for future policy consultations include adapting the format of participatory processes to enable optimal use of participant knowledge, as well as greater service-user participation.

Project description:BackgroundTo date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers.Material and methodsA questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet.ResultsInvited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ? 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise.ConclusionsMost research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph.D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration.

Project description:BackgroundDementia is a disease that impacts people with dementia, their families, and the healthcare system. In 2018, the number of people with dementia in the EU, the European Free Trade Association (EFTA), and the UK was estimated to be 9.1 million. National dementia strategies and publications by organisations such as Alzheimer Europe outline how dementia-specific care should be designed. This study aims to provide insights into existing formal care structures, models of good practise, and gaps in dementia-specific care for people with dementia in 17 European countries.MethodsThe research is based on guided interviews with country-specific care experts. A mixed-methods approach with a combination of open and closed questions was used. All interviews were recorded and transcribed verbatim based on the transcription rules of Kuckarts (2010). For data evaluation, the qualitative content analysis model of Mayring (2014) was used.ResultsIn all 17 countries, efforts for dementia-friendly care and models of good care practise exist. However, there are large differences between European countries regarding the spread of dementia-specific services. In nine countries (Bulgaria, Finland, Italy, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), there are already nationwide structures, while in five countries (Belgium, Greece, Ireland, Portugal, Romania), services are only available in certain regions. In three countries (Austria, Denmark, Germany) dementia-specific outpatient services are widespread nationwide, whereas inpatient services are not. Simultaneously, in all countries, areas with major care gaps exist. Several European states have an urgent need for action concerning the expansion of the provision of dementia-specific services, the reduction of regional differences regarding the provision of care, the elimination of barriers to access to care, the dementia-friendliness of services, and the participation of people with dementia and their relatives in care and research.ConclusionsTo reduce the existing structural inequalities in care between and within European countries, and to establish quality-related minimum standards in the care of people with dementia, transnational concepts are needed. The EU, in cooperation with care planners, research institutions, care providers, and patient organisations, should develop European care guidelines or dementia plans that contain concrete measures, schedules, and budgets.

Project description:There is a growing interest in using technology to provide meaningful activities for people living with dementia. The aim of this systematic review was to identify and explore the different types of digital technologies used in creating individualized, meaningful activities for people living with dementia. From 1414 articles identified from searches in four databases, 29 articles were included in the review. The inclusion criteria were the study used digital technology to deliver an individually tailored activity to participants with dementia, the process of individualization was described, and findings relating to the mental, physical, social, and/or emotional well-being of the participant were reported. Data extracted from the included studies included participant demographics, aims, methods, and outcomes. The following information on the technology was also extracted: purpose, type, training, facilitation, and the individualization process. A narrative synthesis of the results grouped the various technologies into four main purposes: reminiscence/memory support, behavior management, stimulating engagement, and conversation/communication support. A broad range of technologies were studied, with varying methods of evaluation implemented to assess their effect. Overall, the use of technology in creating individualized, meaningful activities seems to be promising in terms of improving behavior and promoting relationships with others. Furthermore, most studies in this review involved the person with dementia in the individualization process of the technology, indicating that research in this area is adopting a more co-creative and inclusive approach. However, sample sizes of the included studies were small, and there was a lack of standardized outcome measures. Future studies should aim to build a more concrete evidence base by improving the methodological quality of research in this area. Findings from the review indicate that there is also a need for more evidence concerning the feasibility of implementing these technologies into care environments.

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Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

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Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

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