Search

Additional file 1. GRIPP2 short form.

Additional file 3. Completed GRIPP2 long form.

Additional file 3. GRIPP2 checklist.

Supplemental Material, Supplemental_material for A survey of the experience of living with dementia in a dementia-friendly community by Nicole Darlington, Elspeth Mathie, Andrea Mayrhofer, Claire Goodman, Antony Arthur, Michael Woodward, Anne Killett, John Thurman, Stefanie Buckner and Louise Lafortune in Dementia

Additional file 2. Topic guide.

Additional file 4. Researcher Feedback Form 2018.

Additional file 1. Survey.

Public Health England have identified that almost a quarter of children are overweight when they start primary school, which increases to a third when they leave in year 6 aged 10-11 years. This has implications for young peoples’ physical and mental health and also later in adult life. The newly launched NIHR Applied Research Collaboration (ARC) East of England is focusing on selected areas of health inequality and this includes neighbourhoods in Stevenage, Hertfordshire which have high rates of childhood obesity. In order to find out what young people think about these issues, Hertfordshire County Council and the University of Hertfordshire carried out a collaborative project in 2019. Hertfordshire County Council have adopted a Whole Systems approach to obesity and are keen to engage with young people in order to prioritise issues identified by them. The importance of ‘involving’ young people in shaping services has been widely documented. Two researchers met twice with 56 young people (from a range of schools) aged 16 years who were attending the National Citizen Service (NCS) scheme at a school in Stevenage in the summer holidays. A number of involvement activities were carried out during the sessions. The young people, with help from the researchers, facilitated their own informal discussion groups, using maps, flips charts, post-it notes and an anonymous suggestion box. The first session did not mention obesity but allowed open discussion about what it was like to live in Stevenage and the second session focussed more on the issue of ‘obesity and weight’. The young people were encouraged to find their own solutions and imagine if they “were in charge”. The four main themes that came from the sessions were; affordability, crime and anti-social behaviour, transport and places to go and eat. A number of solutions were suggested by the young people which included; healthy environment (e.g. cycle paths, street lights, regulation of shops), community approach (e.g. more affordable sports activities), schools (e.g. raise awareness, promote sport), focus on young people (e.g. activities for young people and healthy affordable eating outlets) and helping people maintain a healthy weight. The priorities identified by local young people and the wider issues they raised are important to take into consideration when shaping any intervention or public health initiative, especially when considering the wider determinants of health. Listening to the issues and solutions and using the language of young people is vital and young people should be included in co-designing any services that are aimed at them. Involving local young people who know an area and who can identify important issues is vital for any successful public health intervention.

Within current mainstream understandings of patient and public involvement (PPI) in health research, a clear distinction is made between what ‘involvement’ in research is: ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them'1 and what it is not: namely ‘engagement with’ and ‘participation in’ research. Research evidence describes problems than can arise when such distinctions are unclear or misunderstood (often by those new or unfamiliar with PPI); or when distinctions are intentionally blurred e.g. by ‘dual roles’ being created within some projects, where research participants also advise on the conduct of projects. What is less widely examined, however, is the blurring of boundaries between the object of enquiry which is the business of PPI for that project, the data which is the object of qualitative collection involving discussion with participants and the purposeful research activities which are best progressed through engagement with stakeholders. This poster draws upon case study findings from two recent, similar National Institute for Health Research (NIHR)-funded evaluations of PPI in health research: RAPPORT (England-wide) and IMPRESS (regional research programme-specific), pertaining to how researchers (from various disciplines, using various research designs) within different case study research projects can blur the boundaries between qualitative research, stakeholder events and PPI. We pose questions pertaining to the consequences of blurred research design boundaries for the success of outcomes of public-research collaborations. We query why, and to what extent, such distinctions matter in co-producing knowledge and in measuring the impact of various investments in collaborative research activities.

Consumer involvement or patient and public involvement (PPI) in health research is a UK policy imperative and a prerequisite for many funders. PPI in research is defined as research carried out with or being carried out by the public (or service users), rather than research on patients and public as subjects or participants. Despite the clear policy driver, there is relatively little empirical evidence on the extent, processes and impact of user involvement in research. This paper aims to add to the international evidence base on PPI in research by providing a key overview of current trends and impacts. In order to understand the current extent and variation of PPI in research, a scoping exercise and survey were carried out on selected UK studies. Six research topic areas (cystic fibrosis, diabetes, arthritis, dementia, intellectual and developmental disabilities, and public health) were selected to ensure a range of designs, study populations and histories of PPI in research. A total of 838 studies (non-commercial studies and not older than 2 years) were contacted. The response rate for the scoping was 38% and the survey 28%. In the scoping, 51% of studies had some evidence of PPI and in the survey 79%. The most common PPI activity was steering committee membership and reviewing patient information leaflets. There appeared to be some blurred roles with patients participating as research subjects as well as carrying out patient involvement roles. A major finding was the limited amount of available information about PPI in publicly accessible research documents. We suggest that the invisibility of this type of involvement and the lack of routinely collected information about PPI results in a lack of shared understanding of what optimal PPI in a study should look like, with important implications for practice. Furthermore, without a framework to review PPI it is difficult to know if different approaches to PPI have a different impact on key outcomes of the research.

Many older people use one or more prescribed medicines on a daily basis. Effective medicines management at hospital discharge can support appropriate use of medicines following discharge and help avoid unnecessary hospital re-admission. Many people, however, feel they receive insufficient information about medicines on discharge from hospital.To explore older people and their family carers' experience of hospital discharge in relationship to the organization and management of medicines.Qualitative interviews with older people over 75 years old, taking four or more medicines, and their carers, following discharge from hospital in the United Kingdom (UK). Participants completed medication diaries prior to the interview.Interviews took place in the participant's home.Nineteen interviews were conducted involving 12 carers and seven older people. Participants were generally not satisfied with the discharge process, particularly concerning perceived delays in discharge. Inadequate explanations about medicines at discharge were commonly reported and led to omission of medicines, incorrect dosage, anxiety and confusion. Poor communication between the hospital and general practitioners or community pharmacists was also evident.Despite significant policy recommendations and research in this area, many problems with the management of medicines during hospital discharge were shown, and a lack of partnership was evident between hospital staff and patients/family carers regarding the use of medicines post-discharge. Improved medicines management during hospital discharge is required to ensure older people take their medications as prescribed and to protect them from the adverse effects of medicines not being taken correctly.

Peer reviewed: True, Funder: National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE), OBJECTIVES: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England. METHODS: Fieldwork took place in six diverse case study sites across England. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs. RESULTS: The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Change that presents inputs into a DFC and short, medium and longer term outcomes. Third, a matrix for assessing a DFC's degree of maturity, which enables a sense of the kinds of outcomes a DFC might realistically aspire to. These three outputs form a suite of interlinking and complementary evaluation resources for DFCs. CONCLUSIONS: The study has contributed evidence-based resources for monitoring and evaluation that complement existing frameworks. They can be applied to arrive at a detailed assessment of how well a DFC works for people affected by dementia, and at insights into the underlying factors that can guide future policy and practice.

Background Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement. Methods This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters. Findings All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and ‘ad hoc’ conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs. Conclusion The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.

Background Health research in the UK requires patients, those with lived experience and members of the public to be involved in designing and shaping research: many of them have reported that their comments and suggestions are not always acknowledged, and they do not know if their input has been used or is useful. The benefits of feedback from researchers not only create motivation for further involvement but aids learning and development, as well as recording impact. The aims of this study were to improve the feedback experience of Patient and Public Involvement (PPI) contributors. Co-produced feedback processes were designed and implemented in order to change feedback from researchers to PPI contributors in six PPI groups in England. Methods An explanatory mixed methods sequential study design was utilised with a comparative questionnaire survey (administered 20 months apart), interviews and a focus group with PPI leads, researchers and PPI contributors. Patient and Public Involvement contributors were involved from initial idea, study design, data analysis through to dissemination. Results Co-designed feedback processes were introduced in five of the six PPI groups and there was an overall increase in the frequency of feedback over the period studied. The enablers and barriers to implementing feedback processes were identified, which included the importance of wider institutional level support. PPI leads need to have dedicated time and acknowledge feedback as part of their role. The importance of individual feedback processes designed by, and for each PPI group, rather than a generic one, was also identified as key to successful implementation. Conclusion The role of the PPI lead is an important facilitator in improving feedback but can easily be overlooked and has been described as invisible. PPI leads can perform an essential bridging role between researchers and members of the public. This study has shown that PPI feedback processes can be implemented if they are part of embedded PPI with explicit expectations, facilitated by a dedicated PPI lead role with sufficient support and resources. The findings have implications beyond this particular study, particularly for those involved in undertaking and funding health and social care research.