User-generated quality standards for youth mental health in primary care: a participatory research design using mixed methods

OBJECTIVES: To develop user-generated quality standards for young people with mental health problems in primary care using a participatory research model. METHODS: 50 young people aged 16–25 from community settings and primary care participated in focus groups and interviews about their views and experiences of seeking help for mental health problems in primary care, cofacilitated by young service users and repeated to ensure respondent validation. A second group of young people also aged 16–25 who had sought help for any mental health problem from primary care or secondary care within the last 5 years were trained as focus groups cofacilitators (n=12) developed the quality standards from the qualitative data and participated in four nominal groups (n=28). RESULTS: 46 quality standards were developed and ranked by young service users. Agreement was defined as 100% of scores within a two-point region. Group consensus existed for 16 quality standards representing the following aspects of primary care: better advertising and information (three); improved competence through mental health training and skill mix within the practice (two); alternatives to medication (three); improved referral protocol (three); and specific questions and reassurances (five). Alternatives to medication and specific questions and reassurances are aspects of quality which have not been previously reported. CONCLUSIONS: We have demonstrated the feasibility of using participatory research methods in order to develop user-generated quality standards. The development of patient-generated quality standards may offer a more formal method of incorporating the views of service users into quality improvement initiatives. This method can be adapted for generating quality standards applicable to other patient groups.