ObjectiveTo summarise study descriptions of the James Lind Alliance (JLA) approach to the priority setting partnership (PSP) process and how this process is used to identify uncertainties and to develop lists of top 10 priorities.DesignScoping review.Data sourcesThe Embase, Medline (Ovid), PubMed, CINAHL and the Cochrane Library as of October 2018.Study selectionAll studies reporting the use of JLA process steps and the development of a list of top 10 priorities, with adult participants aged 18 years.Data extractionA data extraction sheet was created to collect demographic details, study aims, sample and patient group details, PSP details (eg, stakeholders), lists of top 10 priorities, descriptions of JLA facilitator roles and the PSP stages followed. Individual and comparative appraisals were discussed among the scoping review authors until agreement was reached.ResultsDatabase searches yielded 431 potentially relevant studies published in 2010–2018, of which 37 met the inclusion criteria. JLA process participants were patients, carers and clinicians, aged 18 years, who had experience with the study-relevant diagnoses. All studies reported having a steering group, although partners and stakeholders were described differently across studies. The number of JLA PSP process steps varied from four to eight. Uncertainties were typically collected via an online survey hosted on, or linked to, the PSP website. The number of submitted uncertainties varied across studies, from 323 submitted by 58 participants to 8227 submitted by 2587 participants.ConclusionsJLA-based PSP makes a useful contribution to identifying research questions. Through this process, patients, carers and clinicians work together to identify and prioritise unanswered uncertainties. However, representation of those with different health conditions depends on their having the capacity and resources to participate. No studies reported difficulties in developing their top 10 priorities.

Background: Dementia is recognised as one of the greatest global public health challenges. A central tenet of national health and social care policy is to ensure that services support people in achieving their personal wellbeing and outcomes, defined as the things important to people in their lives, also people with dementia. The aim of this study is to explore what matters to nursing home residents with dementia based on their perceptions of nursing homes as home. Methods: There were conducted 35 interviews with people with dementia in nursing homes. We conducted the in-depth unstructured qualitative interviews. Thematic analysis was applied to analyse the data. Results: The analysis resulted in one over-arching theme "tension between the experiences of a nursing home being a home and an institution" and five themes; "myself and my relationships with fellow residents", "creation of individualised living spaces", "single rooms with personal decor that enhances a sense of connectedness", "transition between the old home and the new home" and "significant activities providing meaning". The participants stated that the transition to the supported, structured living environment in nursing homes to be a clear need based on immediate, serious safety concerns. They went from being masters of their own lives to adhering to nursing home routines. Fellow residents could be both resources and burdens, creating feelings of security and insecurity. A home-like environment was created by allowing the participants to bring their important personal belongings into private spaces. The participants said they needed to be able to decorate their rooms to their own specifications. They wanted involvement in meaningful activities.

Aims and Objective: This study's aim is to examine what matters to nursing home residents with dementia by exploring their perceptions of nursing home health care through the conceptual lens of person-centred care.Background: Dementia is a major contributor to nursing home placement. To understand the meaning of living with dementia, the inclusion of persons with dementia in research studies is essential. Methods: In total, 35 in-depth qualitative interviews were conducted with people who have dementia and live in nursing homes. A thematic analysis was applied to analyse the data. Checklist for qualitative studies: Consolidated Criteria for Reporting Qualitative Research (COREQ) https://www.equat or-netwo rk.org/repor ting-guide lines/ coreq/ Results: The analysis revealed one overarching theme with four sub-themes. Different matchings of person-centred care and routines in health care being the overarching theme. The four sub-themes were as follows: (a) understanding of the interplay between disabilities and ageing; (b) participating based on one's own preferences and needs; (c) incongruence between the person with dementia's preferences and needs and health-care support; and (d) working conditions: the relationship between residents and health-care providers. Despite the substantive focus of researchers on person-centred care and the positive impact on the nursing home health care of those who receive it, the results showed that nursing home residents still want more person-centred care. Conclusions:The results indicate that the incongruence between general routines and individual preferences and needs, as well as the demand to operationalise the person-centred dimensions of health-care behaviour in nursing homes, must be resolved. Health care in nursing homes must focus on enabling residents to participate in daily activities and sustain their personhood and sense of self.

Background Worldwide, patient and public involvement (PPI) in health research has grown steadily in recent decades. The James Lind Alliance (JLA) is one approach to PPI that brings patients, carers and clinicians together to identify priorities for future research in a Priority Setting Partnership (PSP). Our study aim was to describe the reflections of informal carers of people with dementia on the possibility of participating in the JLA’s PSP process, for both themselves and the recipients of their care. In addition, we wanted to explore barriers to and facilitators of their participation. Methods We conducted four focus groups with 36 carers of people with dementia. Thematic analysis was applied to analyse the data. Results An overarching theme emerged from the participants’ reflections: “Creating empowering teams where all voices are heard”. The overarching theme incorporates the participants’ suggestions about the importance of equivalence in power, mutual agreement with and understanding of the goals, adequate support, openness about each partner’s tasks and the bonds needed between the partners to sustain the enterprise, and expectations of positive outcomes. From the overarching theme, two main themes emerged: “Interaction of human factors, the PSP process and the environment” and “The power of position and knowledge”. The overall results indicated that carers are willing to participate in PSP processes and that they thought it important for people with dementia to participate in PSP processes as well, even if some might need extra support to do so. The carers also identified the need for research topics that influence their everyday lives, policy development and healthcare services. Conclusions Both carers and the people with dementia for whom they care are able to contribute to the PSP process when given sufficient support. The involvement of these groups is important for setting healthcare research agendas, developing research projects that increase awareness and knowledge about their circumstances and improving health professionals’, researchers’ and policymakers’ understanding of and insight into their unique situations.

An amendment to this paper has been published and can be accessed via the original article.