Our paper on an exercise intervention for people with serious mental illness has been published in Health Expectations Open Access: An International Journal of Public Participation in Health Care and Health Policy.
People with severe mental illness (SMI) often have poorer physical health than the general population. A co-produced physical activity intervention to improve physical activity for people with SMI in Northern Ireland was evaluated by co-researchers (researchers with lived experience of SMI) and academic researchers using a new approach to participatory data analysis called Participatory Theme Elicitation (PTE). Co-researchers and academic researchers analysed the data from the pilot study using PTE. This paper aims to compare these analyses to validate the findings of the study and explore the validity of the PTE method in the context of the evaluation of a physical activity intervention for individuals with SMI. There was alignment and congruence of some themes across groups. Important differences in the analyses across groups included the use of language, with the co-researchers employing less academic and clinical language, and structure of themes generated, with the academic researchers including sub themes under some umbrella themes. The comparison of analyses supports the validity of the PTE approach, which is a meaningful way of involving people with lived experience in research. PTE addresses the power imbalances that are often present in the analysis process and was found to be acceptable by co-researchers and academic researchers alike.
Yap, J., McCartan, C., Davidson, G., White, C., Bradley, L., Webb, P., Badham, J., Breslin, G. & Best, P. (2020) An exercise intervention for people with serious mental illness: findings from a qualitative data analysis using participatory theme elicitation, Health Expectations, 00: 1 – 15. https://doi.org/10.1111/hex.13141
A further Cochrane Systematic Review – Qualitative Protocol– is available on the factors that influence participation in physical activity for people with bipolar disorder.
Main objective: To identify the factors that create barriers or facilitate physical activity for people with a diagnosis of bipolar disorder from the perspectives of service users, carers, service providers and practitioners to help inform the design and implementation of interventions that promote physical activity.
The overall aim of this review is to identify, appraise, and synthesise qualitative research evidence on the barriers and facilitators to engaging in physical activity in general lifestyle settings or as part of an intervention designed to increase physical activity for people with bipolar disorder. This will allow us to identify factors that create barriers and facilitators of physical activity in this population to inform the development, design, and implementation of future interventions. We will communicate our findings to public health commissioners and other stakeholders.
McCartan CJ, Yap J, Firth J, Stubbs B, Tully MA, Best P, Webb P, White C, Gilbody S, Churchill R, Breedvelt JJF, Davidson G. (2020) Factors that influence participation in physical activity for people with bipolar disorder: a synthesis of qualitative evidence. Cochrane Database of Systematic Reviews Issue 3. Art. No.: CD013557. DOI: 10.1002/14651858.CD013557.
Our paper on the key components of supporting and assessing decision making ability was published today in the International Journal of Law and Psychiatry.
People’s ability to make decisions may be impaired for a wide range of reasons, including by mental health problems and learning disabilities. Individual autonomy, the ability to make decisions about our own lives, is a fundamental tenet of democratic societies. This has been reinforced by laws governing substitute and supported decision making and most significantly by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Article 12 of the UNCRPD requires everyone to have equal recognition before the law and, to achieve this, the necessary support and safeguards must be available. There has been considerable debate about the important theoretical and philosophical issues involved and growing research about the practice complexities of supporting and assessing decision making ability or mental capacity. This article aims to present some of the key components of the support and assessment process to inform further service development and training in this area. The key components were identified as part of a qualitative, participatory research project which explored the decision making experiences of people with mental health problems and/or learning disabilities. The conventional approach to the assessment of capacity is to consider four main components, whether the person is able to: understand, retain, use and weigh, and communicate the information needed to make the decision at that time. The findings from this research study suggest that people generally don’t usually talk about their experiences of decision making in terms of these four components and approaches to supporting people to make decisions don’t necessarily break the support down to explicitly address the assessment process. However, considering support for all aspects of the functional test may be helpful to ensure it is as comprehensive as possible. The challenges involved in providing effective support and assessing decision making ability are discussed and the article concludes with some of the implications for training, service development and practice.
Webb, P., Davidson, G., Edge, R., Falls, D., Keenan, F., Kelly, B., McLaughlin, A., Montgomery, L., Mulvenna, C., Norris, B., Owens, A. & Shea-Irvine, R. (2020) Key components of supporting and assessing decision making ability, International Journal of Law and Psychiatry, 72, C, 101613. https://doi.org/10.1016/j.ijlp.2020.101613
Hepburn, A., Bolden, G.B. (2017) Transcribing for Social Research
This book is a practical guide to transcription, together with an explanation of the social science which underpins it. Although one might assume that transcription involves making a verbatim account of words spoken during an interview or focus group, the authors argue that standard orthography is unable to represent the ‘words, gestures and conduct of the people being studied’. Drawing on insights from conversation analysis which show how social phenomena are ‘realised through talk in interaction’, as well as discursive psychology and ethnomethodology, Hepburn and Bolden show the reader, in ten succinct and well written chapters, how to capture words and interactions and record them accurately on paper using a transcription system originally developed by Gail Jefferson.
What impresses about this book is that the authors convincingly argue that standard orthography imposes written conventions on spoken language when written and spoken modes of communication are not identical. The authors therefore demonstrate how
important it is to capture data on timing, overlap, intonation, emphasis and volume if the richness of talk is to be accurately represented as well as providing guidance on the transcription of non-speech sounds and visible conduct. The book is liberally sprinkled with useful information on transcription theory and practice, and is accompanied by a companion website with data and exercises which allow the reader to consolidate their
transcription skills. Given the highly technical nature of the material, the book is easy to follow, although it is best to begin at the beginning and read it in its entirety. Transcription conventions are, for example, introduced gradually with helpful summaries at the end of each chapter. Some prior background knowledge of linguistic terminology might be useful although such knowledge is by no means essential for the determined reader. Admittedly, using such a fine-grained transcription system could be both time-consuming and expensive to implement. The onus may therefore be on the researcher to be aware of these techniques and to gauge whether they can be used in
Transcribing for Social Research is an invaluable contribution to the methodological literature which will appeal to researchers across a range of disciplines who wish to successfully capture speech in all its complexity.
Review originally published in Research Matters, December 2019.
An interesting, and useful, Cochrane Systematic Review – Qualitative Protocol – is now available on the factors that influence participation in physical activity for anxiety and depression:
Main objective: To identify the factors that create barriers or facilitate physical activity for people with a diagnosis of anxiety or depression from the perspectives of service users, carers, service providers and practitioners to help inform the design and implementation of interventions that promote physical activity.
The overall aim of this review is to identify, appraise, and synthesise qualitative research evidence on the barriers and facilitators to engaging in physical activity in general lifestyle settings or as part of an intervention designed to increase physical activity for people with anxiety and depression. This will allow us to identify factors that create barriers and facilitators of physical activity in this population to inform the development, design, and implementation of future interventions. We will also integrate the findings from the QES with the two associated effectiveness reviews (Cooney 2014; Larun 2006). We will communicate our findings to public health commissioners and other stakeholders.
McCartan, C., Yap, J., Firth, J., Stubbs, B., Tully, M., Best, P., Webb, P., White, C., Gilbody, S., Churchill, R., Breedvelt J.J.F., Davidson, G. (2020). Factors that influence participation in physical activity for anxiety and depression: a synthesis of qualitative evidence. Cochrane Database of Systematic Reviews Issue 3. Art. No.: CD013547. DOI: 10.1002/14651858.CD013547.
Great to see that our first paper on supported decision-making has been published in Health and Social Care in the Community!
This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision‐making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision‐making is a central aspect of people’s lives. Participants discussed the positive role which decision‐making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision‐making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision‐making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people.
Webb, P., Davidson, G., Edge, R., Falls, D., Keenan, F., Kelly, B., McLaughlin, A., Montgomery, L., Mulvenna, C., Norris, B., Owens, B., Shea Irvine, R. (2020) Service users’ experiences and views of support for decision making. Health Soc Care Community. 00:1–10. https://doi.org/10.1111/hsc.12961
People with severe mental health problems have a shorter life expectancy and a higher risk of developing some medical conditions. An empowering programme that increases levels of physical activity may play a role in reducing this mortality gap (Mental Health Foundation blog post).
Interested in reading about a research programme which encourages people with serious and enduring mental ill health to be more physically active?
If you are, download our new report here
My review of Hepburn and Bolden’s superb Transcribing for Social Research is available in the December issue of Research Matters magazine. This book is a great resource for anyone who wants to learn about the nuts and bolts of Jeffersonian transcription.
A short film is now available of our inspirational team giving a presentation at the Annual Social Work and Social Care Research in Practice Conference which took place at Belfast Castle on the 6th March 2019 on the theme of supported decision making.
To view the film, please go to the link here.
Colleagues from our research team gave a wonderful presentation on their experiences of working on a co-produced research project at the Annual Social Work and Social Care Research in Practice Conference on the 6th March at Belfast Castle.
Here’s the abstract for the presentation:
Making decisions about your own life is a key aspect of independence, freedom and human rights. Mental health law has previously allowed compulsory intervention even when a person has the decision making ability to decline intervention. This discriminates against those with mental ill health and intellectual disabilities. The Mental Capacity Act (Northern Ireland) became statutory law in May 2016 and will replace rather than run in parallel to a mental health law. A core principle of the new act is that people are “not to be treated as unable to make a decision…unless all practicable help and support to enable the person to make a decision about the matter have been given without success” (Article 1(4)). There are people who, without support, would be assessed as incapable of making certain decisions but with the appropriate support are capable of making those decisions, and so to not provide that support infringes their rights, undermines their autonomy and reinforces their exclusion from society.
The study was funded by Disability Research on Independent Living and Learning (DRILL) and was a multi-agency partnership between Praxis Care, Mencap NI and Queen’s University of Belfast. The study was designed because there is limited research evidence about people’s experiences of the different approaches which can support decision-making, Four peer researchers were therefore employed for the duration of the project and 41 interviews were conducted with people with mental ill health and intellectual disabilities in order to understand their experiences of supported decision-making, their preferences and ideas for how decision-making should be supported. This presentation will look at the process of co-production and the pros and cons of conducting co-produced studies which involve people with mental ill health and intellectual disabilities. Suggestions for how to overcome the barriers to successful co-produced projects will be given.
Edge, R., McLaughlin, A., Norris, B., Owens, A., Webb, P. (2019) Perspectives on co-production: supported decision making – experiences, approaches and preferences. In Public Health Agency, Health and Social Care Board, Building Research to Evaluate Complex Interventions in Social Work and Social Care: A Consideration of Methodological Issues, 6th Annual Social Work and Social Care in Practice Conference, Belfast Castle, Belfast, UK, 6th March 2019.