Participatory approaches are increasingly required and used in research. In this review, we examined the impact (benefits and disadvantages) of participatory dementia research on researchers as potential key actors to sustainably implement the participatory approach. Our aim was to provide information on how the participatory process could be improved. We conducted a systematic literature review covering the Cochrane Library, PsycNet, PubMed, Scopus, and Google Scholar. The inclusion criteria for publications were as follows: research (1) involving people with dementia as co-researchers, (2) including a description or discussion of the impact of participatory research for researchers, (3) published between 2000 and 2020, and (4) in English. We performed a quality assessment of the included publications. Our final review included nine publications; three categorized as high quality, five as medium quality, and one as low quality. Four of the publications categorized as high or medium quality implemented participation at the level of partnership, and two publications implemented participation at the level of delegated power. The beneficial impact of participatory dementia research on researchers consisted of an increased understanding of people with dementia that widened researchers’ theoretical knowledge and perspectives and increased their competence in working with people with dementia. Disadvantages comprised the required additional effort and time as well as the difficulty of establishing a balanced relationship between researchers and co-researchers. Disadvantages may result from the lack of a definition and structure of participatory research and a lack of training on both sides. More well-designed and transparent methods of evaluating participatory research projects are needed.
Summary Background People diagnosed with multiple sclerosis often have cognitive problems. However, it is unclear how cognitive impairment is currently assessed and managed in the UK. Aim The aim of this study was to understand the current clinical practice of assessment and management of cognitive impairment in people with MS and to highlight any national variation. Methods A survey was posted to 150 MS centres and large hospitals and an online version was shared via email and on social media. Results Responses were analysed from 109 healthcare professionals. Approximately 59% (n = 64) reported that they used cognitive assessment tools: the Montreal Cognitive Assessment (MoCA) was the most widely used. Assessments were usually done by occupational therapists (55%; n = 60) or clinical neuropsychologist and psychologists (38%; n = 41); 49% (n = 53) of respondents developed and implemented a cognitive rehabilitation plan when the assessment indicated that patients had cognitive problems; 16% (n = 17) indicated that they would refer patients to specialist cognitive rehabilitation for symptom management; 3% (n = 3) followed a manual when providing a cognitive rehabilitation programme. Conclusions Clinical pathways for assessing and managing cognitive problems vary and are dependent on the individual expertise of health professionals, available resources, and access to specialist services. Although healthcare professionals highlight the importance of assessment and management, cognitive rehabilitation programmes are not routinely offered in the UK.
While previous randomised controlled trials and meta-analyses offer only limited evidence for the effectiveness of cognitive rehabilitation, qualitative studies examining patient perspectives report more positive outcomes. This meta-synthesis of qualitative studies examined patient perspectives of cognitive rehabilitation for memory, attention, and executive function problems in people with multiple sclerosis. Using set eligibility criteria, we screened electronic databases, reference lists, and academic networks for
Engaging stakeholders in health‐related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group‐specific stakeholder priorities and attitudes regarding participatory involvement in dementia research.
Objective: To determine the quantity and quality of description of cognitive rehabilitation for cognitive deficits in people with Multiple Sclerosis, using a variety of published checklists, and suggest ways of improving the reporting of these interventions. Data sources:Ten electronic databases were searched, including MEDLINE, EMBASE, CINAHL and PsycINFO, from inception to May 2017. Grey literature databases, trials registers, reference lists and author citations were also searched.Review methods: Papers were included if participants were people with multiple sclerosis aged 18 years and over, and if the effectiveness of cognitive rehabilitation in improving functional ability for memory, attention or executive dysfunction, with or without a control group, was being evaluated. Results:Fifty-four studies were included in this review. The reporting of a number of key aspects of cognitive rehabilitation was poor. This was particularly in relation to content of interventions (reported completely in 26 of the 54 studies), intervention procedures (reported completely in 16 of the 54 studies), delivery mode (reported completely in 24 of 2 the 54 studies) and intervention mechanism of action (reported completely in 21 of the 54 studies). Conclusion:The quality of reporting of cognitive rehabilitation for memory, attention and executive function for multiple sclerosis, across a range of study designs, is poor. Existing reporting checklists do not adequately cover aspects relevant to cognitive rehabilitation, such as the approaches used to address cognitive deficits. Future checklists could consider these aspects we have identified in this review.
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