User participation in research Dr. Bengt Svensson Center for evidensbased psychosocial interventions Lund university

Background User participation in the delivery and evaluation of mental health services has become important both for policymaking and service development It is common to invite users of care to participate in administrative decisions and care activities

Activities where users been involved As case managers (Paulsen et al 1999) Service providers in crisis teams (Lyons et al 1996) Peer counsellers alongside case managers (Klein et al 1998) Teachers in training of mental health professionals (Cook et al 1995) Interviewers in research studies (Clark et al 1999)

Experiences of user participation in research in Sweden Users as interviewers in research projects studying satisfaction with care Research education for users, an attempt to rise new questions

The satisfaction with care project Differences between staff interviews and user interviews concerning satisfaction with care have been shown Earlier research may be biased toward a perspective of service providers

The evaluation model (2005 and 2007) Should have a high degree of practicability Meet needs of feedback for care providers Describe areas which users perceive as particularly satisfactory, unsatisfactory or in need of further quality improvement

Data collection Questionnaire with nine statements about the mental health service with fixed four- step response scales. Three open-ended questions where the user in a dialog with the interviewer could give comments on their experiences Focusgroups with the user interviewers

Recruitment of interviewers Advertisements in local newspapers and under “vacancies” at the county council’s homepage. Sixty four persons applied for the work, among these 54 were interviewed and finally 21 user interviewers were appointed to enter the educational programme

Education of interviewers 2005 a four hour group session, 2007 a six hour session with following content: Earlier research on user satisfaction Aim and background of the present study Research ethic principles Demonstration of the interview Practice by interviewing each other Follow-up four weeks after the education

The questonnaire Derived from quality indicators outlined by the service provider: High quality/competence in treatment and rehabilitation. Care shall be provided when and where it is needed. Respect for users and their relatives shall characterize the service. There shall be a systematic user influence on planning, managing and evaluation of the services. Service shall be designed to meet individual needs Services shall have a high accessibility. The care shall be characterised by continuity in the content of treatment and rehabilitation. Episodes of care shall be coherent and logical to the users.

The open-ended questions “Describe what you appreciated most about the care you have received?” “Describe those things you appreciated least or feel negative about in the care you have received?” “What would you like to change?”

Sample All users in the county attending a mental health service or admitted to inpatient care on four specific days in 2005 and three specific days in 2007 were asked if they wanted to participate in the study. Six different cities and one larger municipality

Demographic characteristics of the different samples Sex (N=227) (N=211) Men Women Age m (range) 45 (20-83) 42 (18-86) Place of birth Sweden Other country Living conditiones Alone With partner With parents 9 12 Else 24 16

Results from the survey A majority of the users experienced a high satisfaction with care as measured with the questionnaire In comments on the open-ended questions during the interview they expressed significant dissatisfaction with many aspects of the treatment

Areas with high satisfaction Staff attitude/confirmation: staff members showing a positive attitude and take an active interest in the patient Continuity: meeting the same staff Accessibility: possibilities to get help when you need it Specific aspects of service: e.g. medication, CBT, DBT

Most negative aspects of services Difficulties in getting contact/long waitinglists Insufficient cooperation between caregivers Insufficient information Staff turnover/lack of continuity Focus on medication

To be a user and an interviewer The interviews had been inspiring and fun to do and it was contributing and interesting to talk to the users Some of the interviewers felt burdened by the case histories they took part of when listening to the users A major problem had been to make appointments with the users

Summary: Satisfaction project It was possible to recruit users for participation in a research project It was possible to make a design where user interviewers with a minimum of training performed interviews with users in both outpatient and inpatient settings in order to collect systematic data The study was completed without complications

Research education for users Aims with the project: To develop and test an education in research methodology for users To create a platform of users for support and counselling in research issues To actively involve users in different parts of the research process

Educational program Introduction, what is research? Different views of knowledge/positivism/hermeneutics etc. How to find and read scientific litterature Study designs, RCT, surveys, case-control etc How to work with qualitative methods Research ethics Analyses of quantitative data

Potential benefits from user involvement in research Perspectives that professionals never thought of may be discovered Users as active participants in research might strengten the validity of results Users can be a resource in the understanding of results from data analyses Active user involvement in research might facilitate the recruitment of probands from certain patient groups

Thank You AND GOOD BYE