Tag Archives: Peer Research

Paper on Supported Decision-Making

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Great to see that our first paper on supported decision-making has been published in Health and Social Care in the Community!

Abstract

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

Short Film: Supported Decision Making

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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.

Perspectives on Co-Production

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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.

Supported Decision Making Report: Recommendations

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Support for decision making needs to be individualised.

Our co-produced research report on supported decision making for people with intellectual disabilities and mental ill health made a number of recommendations.

Take a look at page 44 of the report for further information.

Davidson, G. Edge, R., Falls, D., Keenan, F., Kelly, B., McLaughlin, A., Montgomery, L., Mulvenna, C., Norris, B., Owens, A., Shea Irvine, R. and Webb. P. (2018) p. 44

Supported Decision Making Report: Key Findings

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  • Our co-produced research report is now available on supported decision making with people with intellectual disabilities and mental ill health.
  • An easy read report is also available.

Key Findings

Decision making is a central aspect of people’s lives. Participants discussed the positive role which decision making can have in their life but also how it felt when they are not supported to make their own decisions.

Participants said there were three 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 making decisions.

In terms of support, people said they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from.

The peer researcher aspect of the project strengthened the research process and was valued by participants. This is an evolving area of research practice that needs further critical exploration of the issues involved.

Davidson, G. Edge, R., Falls, D., Keenan, F., Kelly, B., McLaughlin, A., Montgomery, L., Mulvenna, C., Norris, B., Owens, A., Shea Irvine, R. and Webb. P. (2018) p. 6

Supported Decision Making at KESS

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Our four peer researchers gave a wonderful presentation of findings so far for the supported decision making research project at the Knowledge Exchange Seminar (KESS), Parliament Buildings, Stormont, Belfast on the 7th February 2018.

A policy briefing, the slides and a video of their talk is now available!

Supported Decision Making

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Our research team will be giving a presentation on Supported decision making – experiences, approaches and preferences at the Knowledge Exchange Seminar, Long Gallery, Parliament Buildings, Stormont on the 7th February 2018.

So why not take a look at the abstract and register to attend if you are around?

Abstract

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 health problems and intellectual disabilities. In May 2016 the Mental Capacity Act (Northern Ireland) became statutory law, although may not be implemented until 2020. In contrast to other countries this law will replace rather than be in parallel to a mental health law. This is a unique and progressive development which seeks to address the discrimination of separate 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. There is very limited research evidence available about people’s experience of the range of approaches provided to support decision-making; what approaches work for whom; and what people’s preferences are for support. This evidence is urgently needed to inform the Code of Practice for the new Act and the wider implementation process.

This presentation provides a summary of findings from a research project which explored how people have, or have not been, supported to make their own decisions. It was funded by Disability Research on Independent Living and Learning (DRILL) and used a coproduction approach between disabled people, Praxis, Mencap and Queen’s. The project involved peer researchers interviewing 20 people with mental health problems and 20 people with intellectual disabilities, to gain an in-depth understanding of their experiences of supported decision-making and their preferences and ideas for how decision-making should be supported in the new legal framework.