Service User Research Enterprise (SURE)
Other members of the research team have interviewed 200 people with severe mental illness in the care of Community Mental Health Teams at three time points to follow their pathways through care and record their experiences of continuity or discontinuity, using the questionnaires developed through SURE.
These interviews also assessed their mental health, use of services, care needs, their relationship with a keyworker and their quality of life. Keyworkers have been interviewed and each participant has been asked to nominate a main carer: these carers have been asked about their experiences of psychiatric services and of continuity of care, using the questionnaires developed with SURE.
20 service users and their carers are being interviewed in depth about their experiences. Health, social and voluntary care agencies involved in the care of the participants are also being studied: the research team are looking for factors that promote or hinder continuity of care and organisational issues that provide that impact users’ and carers’ experiences.
Other collaborators are based at the Division of Community Health Sciences at St George’s, University of London and at the Institute of Primary Care and Public Health, London South Bank University. The research is funded by NHS Service Delivery and Organisation Research & Development Programme.
a.sweeney@iop.kcl.ac.uk
NHS Service Delivery and Organisation Research & Development Programme
www.sdo.lshtm.ac.uk
Experiences of Continuity and Health and social Outcomes in mental health (ECHO)
Summary
This study aims to explore the issues covered by the term ‘continuity of care’ with service users and the relatives, friends and professionals who support them. The research team is finding out about the support people receive and the impact of continuity of care on their health. Users and carers have helped developed questionnaires that can be used to measure continuity of care from their perspective.Why carry out the research?
Continuity of care has different definitions: it may be continuous care throughout an illness, meeting an individual’s needs as they change; communication between different professionals and agencies; support from as few professionals as possible; support from one professional with whom an individual can develop a relationship. Relatively little is known about which kinds of continuity of care are most significant for people and have most impact on their mental health – or whether users may sometimes see continuity of care as being unhelpful. Previous attempts to define continuity of care have been from the perspective of mental health professionals and managers, and relatively little is known about the views of users and carers themselves.How is the research being undertaken?
SURE held a series of focus groups with users and carers living in south London where discussions centred around their experiences and perspectives of continuity of care. The findings of these groups were used to develop questionnaires for measuring both service users’ and carers’ priorities for, experiences of and satisfaction with continuity of care. Smaller groups of service users and carers then advised on the content of the questionnaires, the layout and the language used. The questionnaires were then piloted.Other members of the research team have interviewed 200 people with severe mental illness in the care of Community Mental Health Teams at three time points to follow their pathways through care and record their experiences of continuity or discontinuity, using the questionnaires developed through SURE.
These interviews also assessed their mental health, use of services, care needs, their relationship with a keyworker and their quality of life. Keyworkers have been interviewed and each participant has been asked to nominate a main carer: these carers have been asked about their experiences of psychiatric services and of continuity of care, using the questionnaires developed with SURE.
20 service users and their carers are being interviewed in depth about their experiences. Health, social and voluntary care agencies involved in the care of the participants are also being studied: the research team are looking for factors that promote or hinder continuity of care and organisational issues that provide that impact users’ and carers’ experiences.
Where is it happening?
The research is based in two large south London boroughs.Who is involved?
Professor Tom Burns at Oxford University is leading the investigation and is working in collaboration with Angela Sweeney, Dr Diana Rose and Professor Til Wykes from SURE.Other collaborators are based at the Division of Community Health Sciences at St George’s, University of London and at the Institute of Primary Care and Public Health, London South Bank University. The research is funded by NHS Service Delivery and Organisation Research & Development Programme.
What is the timescale?
The five year project has been completed, and the final peer-reviewed report has been submitted to the funders. Papers are currently being prepared for publication.To find out more
Angela Sweeney, SURE project researchera.sweeney@iop.kcl.ac.uk
NHS Service Delivery and Organisation Research & Development Programme
www.sdo.lshtm.ac.uk