Supported Decision Making Report: Recommendations

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

  • 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

Handling the Media

Illman, J. (2016) Handling the Media: Communications and Presentation Skills for Healthcare Professionals

This book is primarily for healthcare professionals who may not know how to communicate with the media or who may be reluctant to do so. Written by an experienced medical writer, the book shows how the interests of journalists differ from those of healthcare professionals, while emphasising that the relationship between these two groups need not be an antagonistic one.

Because journalists will be interested in stories which are novel, universally appealing and controversial, the author argues that healthcare workers should engage with the media in order to avoid misrepresentation. But to engage successfully, communication skills need to be honed.

John Illman consequently offers concrete advice on how to respond to requests for a media interview and how to prepare for the interview once accepted. Particularly insightful is his discussion of “bridging” techniques, which are used to acknowledge and to respond constructively to difficult questions. This is an important skill to master where the agendas of the interviewer and the interviewee differ.

Useful guidance is also given on how to prepare and deliver presentations and how to use social media to communicate effectively. The advice on writing for the press and on pitching an outline of an article to an editor is similarly good and will appeal to readers who want to make medical journalism their career.

This is an excellent book. There is some theory in relation to journalistic balance, bias and law, but the focus is practical. It is well written and will certainly encourage the reader to believe that they can use the media to communicate with a non‐specialist public.

Review originally published in Reviews Significance , 14:2 45 doi: 10.1111/j.1740-9713.2017.01024.x

Supported Decision Making at KESS

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

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.

Research into Practice

The Social Research Association (SRA) has organised a panel discussion in Belfast on 14th March 2018.

This free SRA evening event in Northern Ireland is a panel discussion of how research gets into practice – or doesn’t. What makes this possible, in Northern Ireland and further afield?  What are the barriers, and what are the enablers? Does research get into practice more easily in some sectors or disciplines? If so, what can this teach others, and how?

If this appeals, why not complete the registration form here?

Social Media & Survey Research

Hill, C.A., Dean E., Murphy J. (2014) Social media, sociality and survey research

This book has been written because of the writers’ awareness that declining response rates and inadequate sampling frames present a challenge to all social researchers who wish to collect survey data which is ‘accurate, timely and accessible’. Primarily written by researchers from RTI International, the book is a compendium of chapters which describe how the researchers have incorporated social media data into their research projects. The authors suggest that the book is intended for survey and market researchers, as well as students in survey methodology and market research and I agree that this book will be useful for this constituency.

The writers don’t argue for the replacement of the more familiar survey modes but suggest that postal, web-based and telephone surveys can be supplemented by the imaginative use of social media. Indeed, they recognise that social media data has its own limitations and does not fit easily into designs where precise estimates are needed.

The writers define social media as ‘a collection of websites and web-based systems that allow for mass interaction, conversation, and sharing among members of a network’ and refer to web 2.0 with its user generated content. The book covers a diverse range of topics which include how to predict sentiments and emotions using consistent methods, how to pre-test questionnaires use Skype and Second Life and how to develop innovative research by using social media to collect ideas from large groups of people. There is also a chapter on how to apply the principles of the games designer to market research so that participation in research is more enjoyable.

Athough very wide ranging, the book retains its coherence because it is organised around the idea of a ‘sociality hierarchy’ which can be broken down into broadcast, conversational and community levels. The authors also consistently avoid the use of technical language and include a useful set of references – many of which are downloadable – at the end of each chapter.

This book is a must read for any researcher who wants to make use of social media data; it is incisive, instructive, easy to read and, above all, fascinating.

Review originally published in Research Matters, June 2014