Introduction
Patient and public involvement was sought at multiple time points and at various levels throughout the SOLID project.
Patient and public involvement representatives included children in care, local authority employees, drug and alcohol practitioners and non-looked-after young people. Their contributions have informed the development and delivery of this research. Input has included influencing the study design (see Patient and public involvement in study design and Patient and public involvement throughout the pilot randomised controlled trial) and the co-design of study documents and the adapted manuals to ensure acceptability and readability to both children in care and practitioners. Participating local authorities and drug and alcohol services were heavily involved in the conduct of the feasibility study through screening, recruitment and delivery of interventions.
Examples of PPI throughout the project are documented below.
Patient and public involvement in study design
Three groups of children in care (n = 11, aged 12–20 years) were consulted at the point of designing the study to develop the study proposal. As a result of our PPI, the target age range of the study changed from 13–17 years to 12–20 years, so that we did not exclude early substance users (at the lower end) or young people as they transition out of care and into adult services (at the upper end). The children in care judged it essential to involve young people in the development of the interventions and felt that this research was important, especially with the rise in use of ‘legal highs’. We also consulted widely with service providers, including drug and alcohol workers, social workers and managers. In response to this work, we amended our strategy for recruiting children in care into the study. Children in care and professionals felt that social workers, rather than ‘looked-after children’s’ nurses, were best placed to screen for substance use.
Patient and public involvement throughout the pilot randomised controlled trial
Patient and public involvement was carried out regularly during the study and fed into the management meetings and TOC. The following forums were used within the study.
The research team attended several young persons’ advisory group meetings. The north-east young persons’ advisory group is one of six groups across England and is made up of young people aged 11–18 years who live in the north of England. The groups meets on a monthly basis to help researchers with their projects and raise research awareness among young people. The research team attended a meeting in March 2016 to discuss study documentation to be used within the formative research phase of the study; this included looking at the initial consent leaflets, the participant information leaflets and consent forms. There were 29 participants at the meeting (13 male/16 female, aged 12–18 years). Following discussion at the meetings, a number of changes were recommended and actioned regarding the participant information leaflets. The changes included a complete reformat of the leaflets that we proposed to use, with a change of graphics, simplified language and it was agreed to devise two slightly different versions of the leaflets for those aged 12–15 years and those aged 16–20 years, to accommodate different literacy levels.
The research team attended a North East Children in Care Council Conference in May 2016. Six participants were present (three male/three female) to discuss the topic guides to be used with young people within the formative research and we explored how to introduce the theory of change models. The outcome of the discussions was that participants liked the idea of using graphics to explore the complex ideas of the models. The young people preferred graphics that included ‘people’ in them, as opposed to just words or pictures. Young people identified some graphics that could be used when conducting interviews with children in care.
We also attended a Regional Looked After Networking Group meeting in July 2016 to discuss the survey to be completed with looked-after children’s leads. There was eight participants present, all were female managers or senior members of local authority public health and social work teams. A number of recommendations were made regarding terminology used within the survey and the flow of questions.
Thirty-six participants across three of the local authority sites took part in developing and revising the initial contact form and the car, relax, alone, forget, friends, trouble(s) (CRAFFT) screening tool to be used within the RCT phase of the trial. A number of recommendations were made and implemented, inclusive of the graphics needing to be enlarged and the text to be presented in different colours. Participants also recommended that the research team developed a ‘crib sheet’ for social workers to guide them when introducing the study to young people and that training sessions be offered prior to screening beginning. All of the recommendations were implemented, ‘crib sheets’ were designed and distributed with the CRAFFT forms and training was delivered by researchers (HA and RB) in each local authority site.
The research team attended a further North East Children in Care Council meeting in July 2017. Eight participants were present, including the personal advisor (PA) facilitating the session (seven female/one male), to discuss the topic guides to be used with children in care as part of the process evaluation phase of the research project. Recommendations included minimising the number of questions asked and making the interviews as informal and ‘conversational’ as possible. The recommendations were taken on board and researchers had hints and probes to use, rather than lots of individual questions.
Research patient and public involvement group
While carrying out the PPI with young people, members of the Children in Care Council suggested that they would like to be involved more extensively in PPI work regarding research. This led to a successful application being written to enable a PPI-specific piece of work to be completed. A research PPI group was established at the request of children in care attending one of the North East Children in Care Councils. Additional funding from the Catherine Cookson Foundation covered expenses, such as vouchers, transcription costs and dissemination of the final product (which was a short, 5-minute video). When children in care participated in this particular piece of PPI work, the research team adhered to the same process of obtaining informed consent from children in care and their corporate parent, as explained fully in Chapter 3, Recruitment and sampling strategy. In addition, participants in the research PPI group also signed an additional release form to allow the video that they developed as part of the PPI work to be shown.
Eighteen qualitative semistructured interviews were conducted with seven children in care, the participation officer within a North East Children in Care Council and the four researchers involved in developing and facilitating the PPI group. PPI sessions (nine sessions), each approximately 1 hour in length, were conducted over an 18-month period. Data gathered within the qualitative methods were used to produce a video of the children in care, describing why it was important to have their voice heard and how they could influence research and ‘10 top tips’ of working with vulnerable young people, such as children in care. The overall findings of this piece of work suggested that it was feasible to develop a PPI group with children in care to be involved in academic research projects. The development process and findings from this PPI project have been published elsewhere.68
Conclusion
Patient and public involvement has played a central role within this research project. It has ensured that the study design is as inclusive as possible and that the study documentation is acceptable to study participants. The relationships and links made with local Children in Care Council groups have been successful and have opened up dialogues regarding children in care’s involvement in future pieces of academic research.