User participation in researchUser participation in research

Dr. Bengt SvenssonCenter for evidensbased psychosocial

interventionsLund university

BackgroundBackground

• 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 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 Experiences of user participation in research in Sweden 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 projectThe 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 modelThe evaluation model (2005 and 2007) (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 collectionData 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 interviewersRecruitment 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 interviewersEducation 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 questonnaireThe 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 questionsThe 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?”

SampleSample

• 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 2005 2007Sex (N=227) (N=211) Men 63 70 Women 164 141

Age m (range) 45 (20-83) 42 (18-86)

Place of birthSweden 207 187Other country 20 24

Living conditionesAlone 94 85With partner 100 98With parents 9 12Else 24 16

Results from the surveyResults 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 satisfactionAreas 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 servicesMost 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 interviewerTo 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 projectSummary: 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 usersResearch 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 programEducational 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 Potential benefits from user involvement in researchinvolvement 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 YouThank You

AND

GOOD BYE