Research Methods
http://hdl.handle.net/20.500.12904/149
2024-03-28T14:53:50Z
2024-03-28T14:53:50Z
Widening participation - recruitment methods in mental health randomised controlled trials: a qualitative study
Hall, Charlotte L.
Rennick-Egglestone, Stefan
Martin, Jennifer L.
http://hdl.handle.net/20.500.12904/17885
2024-02-16T01:45:49Z
2023-01-01T00:00:00Z
Widening participation - recruitment methods in mental health randomised controlled trials: a qualitative study
Hall, Charlotte L.; Rennick-Egglestone, Stefan; Martin, Jennifer L.
BACKGROUND: Barriers to mental health research participation are well documented including distrust of services and research; and stigma surrounding mental health. They can contribute to a lack of diversity amongst participants in mental health research, which threatens the generalisability of knowledge. Given the recent widespread use of the internet in medical research, this study aimed to explore the perspectives of key partners on the use of online (e.g. social media) and offline (e.g. in-person) recruitment as an approach to improving diversity in mental health randomised controlled trials (RCTs). METHODS: Face-to-face and online interviews/focus groups with researchers working in mental health and Patient and Public Involvement partners in the United Kingdom. Recordings were transcribed and analysed using a combination of inductive and deductive thematic analysis. RESULTS: Three focus groups and three interviews were conducted with a total N = 23 participants. Four overarching themes were identified: (1) recruitment reach; (2) Demographic factors that affect selection of recruitment method; (3) safety of technology, and; (4) practical challenges. Five main factors were identified that affect the choice of recruitment method: age, complexity of mental health problem and stigma, cultural and ethnicity differences and digital divide. The use of online methods was considered more accessible to people who may feel stigmatised by their mental health condition and with a benefit of reaching a wider population. However, a common view amongst participants was that online methods require closer data monitoring for quality of responders, are not fully secure and less trustworthy compared to offline methods that enable participants to build relationships with health providers. Funding, staff time and experience, organisational support, and technical issues such as spam or phishing emails were highlighted as practical challenges facing online recruitment. All participants agreed that using a hybrid approach tailored to the population under study is paramount. CONCLUSIONS: This study highlighted the importance of offering a flexible and multifaceted recruitment approach by integrating online with offline methods to support inclusivity and widening participation in mental health research. The findings will be used to develop considerations for researchers designing RCTs to improve recruitment in mental health research.
© The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use,
sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and
the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this
article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included
in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will
need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The
Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available
in this article, unless otherwise stated in a credit line to the data
2023-01-01T00:00:00Z
Best practice guidelines for citizen science in mental health research: Systematic review and evidence synthesis
Todowede, Olamide
Kotera, Yasuhiro
Rennick-Egglestone, Stefan
Repper, Julie
http://hdl.handle.net/20.500.12904/17815
2024-01-26T14:26:44Z
Best practice guidelines for citizen science in mental health research: Systematic review and evidence synthesis
Todowede, Olamide; Kotera, Yasuhiro; Rennick-Egglestone, Stefan; Repper, Julie
Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting.
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Ashmore, Rennick-Egglestone, Boyd, Moran,
Ørjasæter, Repper, Robotham, Rowe, Katsampa
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A fundamental change is needed for appraising placebo responses in psychiatry - author's reply
Morriss, Richard K.
http://hdl.handle.net/20.500.12904/17433
2023-08-04T11:26:28Z
A fundamental change is needed for appraising placebo responses in psychiatry - author's reply
Morriss, Richard K.
Matthew Burke makes an important argument that a better biopsychosocial understanding of placebo responses in randomised controlled trials is required. More detailed design and reporting requirements for placebos in randomised controlled trials might also be informative. In addition to an assessment of the adequacy of blinding, measurement of expectancy and hope associated with the intervention, and effects on core or target symptoms as well as total score on symptom and function measures throughout the randomised controlled trials might aid interpretation.1 The distinction between active placebo (some common factors with the active treatment) and passive placebo (no common factors)2 could be useful. A discussion might be included of the nature of the placebo, its functionality, context, and how the efforts to ensure blinding might have compromised the trial in terms of demonstrating efficacy or effectiveness. These effects might be better understood with quantitative and qualitative data collection alongside the trial. In neuromodulation studies of depression, hope and expectancy might be high since access to novel forms of neuromodulation might be restricted. All neuromodulation interventions require participants to start a regular routine of use at home or attendance outside the home. Setting a daily goal and structuring the day are components of some effective psychological treatments for depression such as behavioural activation and cognitive behaviour therapy.3 Therefore, sham neuromodulation might be considered an active placebo with a potentially larger, more variable effect on depression than the additional therapeutic effect from neuromodulation. Furthermore, the design of the study to ensure blinding might compromise both the efficacy of an intervention and the generalisability of the findings. For instance, a fixed low dose of cranial electrostimulation that was subsensory, was employed in the Alpha-Stim trial to ensure double blinding.4 However, in clinical practice, the ability to personalise the dose and use higher currents might improve its effectiveness. RM was chief investigator on a grant from the UK National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) East Midlands. RM has received other NIHR funding for research on interventions for depression and has received funding from Novartis to serve on a data management and ethics committee for two trials on the treatment of depression.
Design decisions and data completeness for experience sampling methods used in psychosis: systematic review
Deakin, Emilia
Ng, Fiona
Young, Emma
Thorpe, Naomi
Craven, Michael P.
Slade, Mike
http://hdl.handle.net/20.500.12904/15948
2024-01-11T13:22:04Z
2022-01-01T00:00:00Z
Design decisions and data completeness for experience sampling methods used in psychosis: systematic review
Deakin, Emilia; Ng, Fiona; Young, Emma; Thorpe, Naomi; Craven, Michael P.; Slade, Mike
Background: The experience sampling method (ESM) is an intensive longitudinal research method. Participants complete questionnaires at multiple times about their current or very recent state. The design of ESM studies is complex. People with psychosis have been shown to be less adherent to ESM study protocols than the general population. It is not known how to design studies that increase adherence to study protocols. A lack of typology makes it is hard for researchers to decide how to collect data in a way that allows for methodological rigour, quality of reporting, and the ability to synthesise findings. The aims of this systematic review were to characterise the design choices made in ESM studies monitoring the daily lives of people with psychosis, and to synthesise evidence relating the data completeness to different design choices. Methods: A systematic review was conducted of published literature on studies using ESM with people with psychosis. Studies were included if they used digital technology for data collection and reported the completeness of the data set. The constant comparative method was used to identify design decisions, using inductive identification of design decisions with simultaneous comparison of design decisions observed. Weighted regression was used to identify design decisions that predicted data completeness. The review was pre-registered (PROSPERO CRD42019125545). Results: 38 studies were included. A typology of design choices used in ESM studies was developed, which comprised three superordinate categories of design choice: Study context, ESM approach and ESM implementation. Design decisions that predict data completeness include type of ESM protocol used, length of time participants are enrolled in the study, and if there is contact with the research team during data collection. Conclusions: This review identified a range of design decisions used in studies using ESM in the context of psychosis. Design decisions that influence data completeness were identified. Findings will help the design and reporting of future ESM studies. Results are presented with the focus on psychosis, but the findings can be applied across different mental health populations.
© The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
2022-01-01T00:00:00Z