Mental health problems are very common in young people aged 16-25. However, access to services is a problem as young people rarely feel comfortable approaching their GP about mental health problems. A new mixed methods study looks at ways in which mental health management in primary care could be improved (Graham et al, 2014).
The first step towards improving the quality of care in any area is often to produce quality standards. There are of course a number of standards in this field already, but developers have not involved young people or young service users in a meaningful way. Given the current paradigm shift towards co-production in mental health, it makes sense to start from the basics and try to involve service users in producing quality standards for their own care. This was the aim of the study by Graham et al, conducted in four South London boroughs and published in BMJ Quality and Safety.
The study was conducted by a research team consisting of GP academics, primary care researchers and service user researchers, as well as groups of young service users termed “co-researchers” who were involved at various stages of the study.
The study was conducted in five stages.
- In stage 1, the recruitment phase, the team recruited the co-researchers. These had to be people between 16 and 25 years old who had sought help from a GP for mental health problems within the previous five years. The researchers used a variety of methods and locations to get in touch with young people who were potentially eligible for the role. Apart from sending letters to young people who had diagnoses of anxiety or depression from a GP in the area, they also advertised the study in three CAMHS service locations, a student counselling service, a homeless shelter and a supported housing project. Co-researchers were trained in facilitating focus groups and interpreting data and were paid for their time. They were also debriefed after they had facilitated focus groups to ensure their emotional well-being.
- Stage 2 consisted of focus groups and interviews with 50 young people in the community. These focus groups were all facilitated by one of the service user researchers and a young service user co-researcher. They were conducted in a variety of settings and involved young people both with and without mental health difficulties. At this stage, the aim was to come up with a coding framework and topic guide that could be used in the next stages of the study. The coding framework was then used to develop quality standards.
- In stage 3, the research team (including co-researchers) identified the codes that were most relevant to primary care and refined the data into one-sentence quality standards.
- In stage 4, these were then given to a pilot group of 11 young service users to read through, comment and amend as necessary. They were also able to ask the facilitator any questions. This group also ranked the final statements in order of importance from 1 to 5. Importance was defined as “the extent to which the standard is necessary when suffering from emotional distress”.
- The quality standards that came out of this stage were then given to a second expert panel of 12 young service users, who were also asked to rank them in order of importance using the same scale as the first group. After they had done this, the research team gave them the anonymised results of the first group and asked them to rerank each standard. The results were presented back to them and agreed upon.
- The end result was that sixteen quality standards for quality in primary care mental health were developed by 28 young service users through the nominal group technique.
- Those standards that deal with training, ensuring confidentiality and referral procedures and protocols are similar to primary care mental health quality standards.
- Other standards are different from existing standards, namely those dealing with treatment options and communication during consultations.
- One standard that the researchers point out is one which calls for better access to talking therapies, as this is something that remains restricted for young people.
- In the area of communication, the user-generated standards are more specific than the existing standards, for example “Primary care practitioners should appreciate that young people can feel embarrassed to seek help and should reassure them that mental health problems are common” vs. the existing standard that GPs should have an “awareness of stigmatising feelings”.
The researchers concluded that exploring young service users’ definitions of quality in primary care led to similarities with published standards as well as new interpretations.
This study has a lot of strengths. Firstly, I thought that involving young service users at every stage of the study was a very good decision and demonstrated the researchers’ commitment to put their money where their mouth was – in quite literal terms, as the young coresearchers were trained, debriefed, and paid for their time.
Young people with and without mental health problems for the focus groups were recruited using a variety of settings, so the focus groups included a sample which was diverse in terms of ethnicity, gender, and employment/education status. This is another strength of the study, as most previous studies on young people’s opinions on their mental health care have focussed on young people in education.
The researchers also conducted individual interviews with three young people who were uncomfortable talking about their experiences in a group situation. This demonstrates a commitment to adapting the protocol and getting potentially useful data and valuable insights by a more time-consuming route rather than letting it go to waste.
Finally, the researchers mention that it was important to manage participants’ and coresearchers’ expectations about what the study could realistically achieve. They also touch on their own experience of making sure the relationship between the primary research team and the young co-researchers was as equal as possible. This gives quite an honest assessment of the difficulties involved in participatory research; I especially credit them mentioning that the authors had to be “self-aware and critical of the obstacles affecting their ability to share power and control over the research with the young service users.” (864)
The example of how codes were turned into quality standards helped understand the process to some extent, but I felt this could have been explained better.
The terminology for the young people involved is inconsistent, especially during the reporting on stages 4 and 5. I found the description of the research process in the abstract much clearer than the description in the actual paper.
There is also a lot of information about the focus group participants, but not so much about the actual co-researchers in terms of their demographic characteristics. I am unsure whether this is deliberate though.
The study used nominal group technique and the authors emphasise the benefits of this technique as it allows group interaction and intensive discussion. However, it also has drawbacks in that louder or more confident individuals may dominate a discussion. Especially where the end goal is a consensus, this could be a potential cause for problems. However, the researchers were aware of this and did consider this against the alternative of letting participants work in isolation.
The researchers mention that quality standards should be tested for acceptability, feasibility, reliability, sensitivity to change and content validity. The study has only achieved acceptability testing, so the other criteria will still have to be tested.
Overall, I think this study represents a well-conducted effort to involve service users in their own care and the way that it is delivered. There is a paradigm shift in mental health towards more co-production at every level, and the development of quality standards represents a very fundamental part of this. The paper was published open access, which means it will be accessible to people outside the medical/research community.
The authors mention that the next logical step would be to incorporate the quality standards into practice to help improve the quality of care in this area. This would also be a means of testing them for the criteria mentioned above.
The fact that some of the standards mentioned by young service users as a desirable thing is also an indicator that they have experienced services which don’t fulfil standards, even though they exist. This emphasises the fact that standards are where service user involvement should start, but they are just that: the starting point. They are not worth much if they are not implemented in practice and used to evaluate and improve service performance. Personally, this elf would love to see this happen.
Graham T, Rose D, Murray J, et al. User-generated quality standards for youth mental health in primary care: a participatory research design using mixed methods. BMJ Quality & Safety 2014; 23:857-566