Dataset Information

It takes two to tango: carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process.

ABSTRACT:

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.

SUBMITTER: Nygaard A

PROVIDER: S-EPMC7227228 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

It takes two to tango: carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process.

Nygaard Agnete A Halvorsrud Liv L Bye Asta A Bergland Astrid A

BMC geriatrics 20200514 1

<h4>Background</h4>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 recipie ...[more]

PMID: 32408893

Similar Datasets

Project description:OBJECTIVE:To 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. DESIGN:Scoping review. DATA SOURCES:The Embase, Medline (Ovid), PubMed, CINAHL and the Cochrane Library as of October 2018. STUDY SELECTION:All 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 EXTRACTION:A 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. RESULTS:Database 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. CONCLUSIONS:JLA-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.

Project description:ObjectiveThere are many uncertainties surrounding the aetiology, treatment and sequelae of hyperemesis gravidarum (HG). Prioritising research questions could reduce research waste, helping researchers and funders direct attention to those questions which most urgently need addressing. The HG priority setting partnership (PSP) was established to identify and rank the top 25 priority research questions important to both patients and clinicians.MethodsFollowing the James Lind Alliance (JLA) methodology, an HG PSP steering group was established. Stakeholders representing patients, carers and multidisciplinary professionals completed an online survey to gather uncertainties. Eligible uncertainties related to HG. Uncertainties on nausea and vomiting of pregnancy and those on complementary treatments were not eligible. Questions were verified against the evidence. Two rounds of prioritisation included an online ranking survey and a 1-hour consensus workshop.Results1009 participants (938 patients/carers, 118 professionals with overlap between categories) submitted 2899 questions. Questions originated from participants in 26 different countries, and people from 32 countries took part in the first prioritisation stage. 66 unique questions emerged, which were evidence checked according to the agreed protocol. 65 true uncertainties were narrowed via an online ranking survey to 26 unranked uncertainties. The consensus workshop was attended by 19 international patients and clinicians who reached consensus on the top 10 questions for international researchers to address. More patients than professionals took part in the surveys but were equally distributed during the consensus workshop. Participants from low-income and middle-income countries noted that the priorities may be different in their settings.ConclusionsBy following the JLA method, a prioritised list of uncertainties relevant to both HG patients and their clinicians has been identified which can inform the international HG research agenda, funders and policy-makers. While it is possible to conduct an international PSP, results from developed countries may not be as relevant in low-income and middle-income countries.

Project description:OBJECTIVES:To identify research priorities for hypertensive disorders of pregnancy from individuals with lived experience and healthcare professionals. DESIGN:Prospective surveys and consensus meetings using principles outlined by the James Lind Alliance. SETTING:UK. METHODS:A steering group was established and 'uncertainties' were gathered using an online survey and literature search. An interim online survey ranked long-listed questions and the top 10 research questions were reached by consensus at a final prioritisation workshop. PARTICIPANTS:Women, partners, relatives and friends of those with lived experience of pregnancy hypertension, researchers and healthcare professionals. RESULTS:The initial online survey was answered by 278 participants (180 women with lived experience, 9 partners/relatives/friends, 71 healthcare professionals and 18 researchers). Together with a literature search, this identified 764 questions which were refined into 50 summary questions. All summary questions were presented in an interim prioritisation survey that was answered by 155 participants (87 women with lived experience, 4 partners/relatives/friends, 49 healthcare professionals and 15 researchers). The top 25 highest ranked questions were considered by the final prioritisation workshop. The top 10 uncertainties were identified by consensus and ranked as follows in order of priority: long-term consequences of pregnancy hypertension (for the woman and baby), short-term complications of pregnancy hypertension (for the woman and baby), screening tests for pre-eclampsia, prevention of long-term problems (for the woman and baby), causes of pregnancy hypertension, prevention of recurrent pregnancy hypertension, educational needs of healthcare professionals, diagnosis of pre-eclampsia, management of pregnancy hypertension, provision of support for women and families. CONCLUSIONS:Research priorities shared by those with lived experience of pregnancy hypertension and healthcare professionals have been identified. Researchers should use these to inform the choice of future studies in this area.

Project description:ObjectivesInspired by the James Lind Alliance (JLA) user involvement approach, the aim of the present study was to identify the top 10 uncertainties for sleep research raised by students in higher education, and to discuss our experiences with adapting the JLA method to a student population.DesignThe study design is a pragmatic JLA approach, including a priority setting partnership within the field of sleep, collection of sleep-related research uncertainties as reported by students in higher education, sorting of the uncertainties and a final identification of the top 10 uncertainties through collaborative work between researchers, students, stakeholders and experts in the field. Uncertainties were collected using a one-question online survey: 'as a student, which question(s) do you consider to be important with regards to sleep?'. A variety of approaches were applied to promote the survey to the students, including social media, radio, the university website, stands in university cafeterias and a sleep stunt. NVivo V.12 was used to code and sort the questions.SettingA higher education institution in Norway.Participants555 students.ResultsThe data collection provided 608 uncertainties, and the following prioritised top 10: (1) screen time, (2) stress, (3) educational achievements, (4) social relations, (5) mental health, (6) physical activity, (7) indoor environment, (8) substance abuse, (9) shift work and (10) sleep quality. Despite successful data collection, we found sleep to be a broad topic, and defining specific questions throughout the sorting and verification process proved difficult.ConclusionsWe identified the prioritised top 10 research uncertainties as reported by students in higher education, ranking screen time first. However, the process was time and resource consuming. The research uncertainties addressed by the students showed great diversity, characterised by heterogeneity and a lack of specificity, making verification of the uncertainties challenging.

Project description:OBJECTIVE:To determine research priorities in hyperacusis that key stakeholders agree are the most important. DESIGN/SETTING:A priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance. PARTICIPANTS:People with lived experience of hyperacusis, parents/carers, family and friends, educational professionals and healthcare professionals who support and/or treat adults and children who experience hyperacusis, including but not limited to surgeons, audiologists, psychologists and hearing therapists. METHODS:The priority setting partnership was conducted from August 2017 to July 2018. An international identification survey asked respondents to submit any questions/uncertainties about hyperacusis. Uncertainties were categorised, refined and rephrased into representative indicative questions using thematic analysis techniques. These questions were verified as 'unanswered' through searches of current evidence. A second international survey asked respondents to vote for their top 10 priority questions. A shortlist of questions that represented votes from all stakeholder groups was prioritised into a top 10 at the final prioritisation workshop (UK). RESULTS:In the identification survey, 312 respondents submitted 2730 uncertainties. Of those uncertainties, 593 were removed as out of scope, and the remaining were refined into 85 indicative questions. None of the indicative questions had already been answered in research. The second survey collected votes from 327 respondents, which resulted in a shortlist of 28 representative questions for the final workshop. Consensus was reached on the top 10 priorities for future research, including identifying causes and underlying mechanisms, effective management and training for healthcare professionals. CONCLUSIONS:These priorities were identified and shaped by people with lived experience, parents/carers and healthcare professionals, and as such are an essential resource for directing future research in hyperacusis. Researchers and funders should focus on addressing these priorities.

Dataset Information

It takes two to tango: carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process.

Background

Methods

Results

Conclusions

Publications

It takes two to tango: carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process.

Similar Datasets

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