Focus groups are not simply a discussion between people, but are focused interviews exploring interactions between participants. In this paper, Ian Mansell, Glynis Bennett, Ruth Northway, Donna Mead and Laurie Moseley explore the complexities and practicalities of using focus groups in research, with reference to a study of palliative care services.

Aim To report on the outcomes of a pilot feasibility study of a structured self-management diabetes education programme targeting HbA 1c .Methods We conducted a two-arm, individually randomized, pilot superiority trial for adults with intellectual disability and Type 2 diabetes mellitus. A total of 66 adults with disabilities across the UK met the eligibility criteria. Of these, 39 agreed to participate and were randomly assigned to either the DESMOND-ID programme (n = 19) or a control group (n = 20). The programme consisted of seven weekly educational sessions. The primary outcome was HbA 1c level, and secondary outcomes included BMI, diabetes illness perceptions, severity of diabetes, quality of life, and attendance rates.Results This study found that the DESMOND-ID programme was feasible to deliver. With reasonable adjustments, the participants could be recruited successfully, and could provide consent, complete the outcome measures, be randomized to the groups and attend most of the sessions, with minimal loss to follow-up. The fixed-effects model, the interaction between occasion (time) and condition, showed statistically significant results (0.05 level) for HbA 1c ; however, the CI was large.Conclusion This is the first published study to adapt and pilot a national structured self-management diabetes education programme for adults with intellectual disability. This study shows it is possible to identify, recruit, consent and randomize adults with intellectual disabilities to an intervention or control group. Internationally, the results of this pilot are promising, demonstrating that a multi-session education programme is acceptable and feasible to deliver. Its effectiveness should be further tested in an adequately powered trial.

The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if 'reasonable adjustments' are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

Further research in this field is required, notably prevalence studies which control for participant demographics and personal situations to obtain more accurate diabetes prevalence rates in this population group. People with ID and diabetes should be encouraged to participate in future research and we recommend exploring the feasibility of adapting current mainstream diabetes management programmes for these individuals.

Accessible summary This paper is about three people with learning disabilities. They work as co‐researchers. They have written this paper with support. Support is important to them. It has helped them to do the research. They each have a personal assistant. Other people working on the project also help them. They have had training and practised what they needed to do before asking other people questions. They have learnt a lot of new skills and have made a lot of decisions about the project. They enjoy their work and hope that other people will learn from their stories. They hope that other people with learning disabilities will want to do research. Summary People with learning disabilities are increasingly taking on the role of researcher within participatory research projects. This paper talks about what it means to be a researcher using the words, views and experiences of three people with learning disabilities who are currently working as co‐researchers. It talks about what they have found helpful, and what they have found challenging. It compares their experiences to those of other people and highlights the importance of support. Overall they report that it has been a positive experience which has helped them to learn a great deal and they provide advice that they hope will help others thinking about taking on such a role.