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Abstract
Background
Relatives of people with psychosis experience high levels of distress. Interventions are needed which can reduce distress and are widely available.
Aims
This study presents the views of relatives on how to design a supported self-management intervention for relatives.
Method
Four focus groups were carried out and relatives were asked for their views on the content, format, support required, likely barriers and potential impact on the outcome of a self-management toolkit.
Results
Relatives were generally very positive about the development of a toolkit. Relatives had clear ideas about the design, emphasising particularly that it needs to be comprehensive, modular, supported and able to translate general information into the specific detail they require for their family member. Many of the ideas informed the development of Relatives Education And Coping Toolkit. Some suggestions, such as multiple modes of delivery, earlier access to the toolkit in primary care and peer support from other relatives, were not possible in this study but should be considered for future development.
Conclusions
Relatives supported the development of a supported self-management toolkit intervention. They also emphasised the importance of offering such interventions alongside other valued aspects of services including face-to-face contact with clinicians, peer support from other relatives and crisis support.
Acknowledgement
The REACT team includes the authors listed and further contribution from Lesley Chapman, Graham Dunn, Vanessa Pinfold, Adam Postlethwaite and Warren Larkin.
Declaration of Interest: This paper presents independent research commissioned by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.