Phase 1 of the feasibility trial entailed the development of the intervention through an iterative process of integrating the existing evidence base with stakeholder consultation. This is in line with the developmental stage of the MRC Complex Intervention Framework.106 What follows is a summary of an article published in Frontiers Psychiatry by Gellatly et al.107 that describes the generation and co-development of the intervention. Copyright © 2019 Gellatly, Bee, Kolade, Hunter, Gega, Callender, Hope and Abel. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. The text below includes minor additions and formatting changes to the original text.
Introduction
Current evidence provides a compelling case for the theoretical development, delivery and evaluation of effective interventions that support CAPRI’s HRQoL. In view of this, we co-developed an intervention called Young SMILES during the modelling stage (Phase I) of the feasibility trial. This intervention builds on the NSPCC’s existing intervention Family SMILES, which was based on the Australian Simplifying Mental Illness plus Life Enhancement Skills (SMILES) programme. Family SMILES targeted families affected by parental mental illness. The intervention demonstrated potential to reach broader demographics in the context of the NHS, with a more clinical focus on CYP’s QoL.
Using a ‘bottom-up approach’, we explored the primary development foundations of such an intervention by utilising qualitative and co-production methods. Our aim was to put children and adolescent’s HRQoL needs at the forefront of co-refinement and co-development work, underlining the primacy of their voice by considering avenues to support CAPRI directly, and separately, from the experiences and needs of their parents. We anticipated that this evaluative process would culminate in an acceptable and feasible child-centred, community-based intervention that improves CAPRI’s HRQoL.
Methods
Semistructured interviews and focus groups were conducted with CYP (n = 14), parents (n = 7), and practitioners from social, educational and health-related sectors (n = 31), considering five key areas: (1) experiences of previous support, (2) unmet needs, (3) barriers to and facilitators of receiving/delivering support, (4) gaps in current provision and (5) what an ideal intervention would look like. Every interview was transcribed and subsequently thematically analysed. Thereafter, key findings and a summation of current evidence were presented to stakeholders, which informed a consensus exercise to underpin the preferred structure and primary components of the intervention.
Key findings
There was some consensus between parents and professional stakeholders about the perceived needs of CYP, but neither went into detail about specific requirements or their need for routine care on a daily basis. Mental health literacy, communication and problem-solving skills emerged as common themes throughout the qualitative work; however, CAPRI frequently disclosed a need for more peer-focused support, as well as more advice on how to better understand and respond to their parent’s difficulties in their own space (i.e. separate from their parents). Isolation was a recurrent problem reported by CAPRI, which was furthered by a lack of understanding from schools about their situation. Sensitively helping parents make sense of how and when their difficulties detrimentally affect their children was a need that was also identified (see Figure 1 for more details). All views were discussed at the consensus exercise and discrepancies were dealt with in group discussion. All views were taken into account but focus was specifically paid to those that did not diverge from the aims and objectives of Young SMILES (i.e. those highlighting the needs of CYP and opportunities to improve their HRQoL).
Young SMILES
These findings informed the co-development of a manualised intervention for CYP aged 6–16 years and their parents called Young SMILES. The intervention was developed within an existing delivery framework and lasted 8 weeks. Additional training materials for professionals were also included. Sessions were delivered on a weekly basis by two highly trained facilitators, each lasting 2 hours. They were group based and peer focused, including fun activities and snack times with parents. There were two age groups: children aged 6–11 years in one group and young people aged 12–16 years in another. Sessions were designed to be delivered in small groups of four to six CYP. Parents’ sessions were delivered separately from the child sessions, commencing after the fourth week of the intervention. For both the parent and the child sessions, although each had its own distinct learning objective, they were all informed by common themes of mental health literacy, communication and problem-solving skills. The venue was located within the community, which was accessible and acceptable to the child and the parent. Referral pathways were embedded within NHS and voluntary sector organisations, which identified potential families. Children’s services, mental health services, schools and voluntary organisations also supported the referral pathway.
Theory of change
A theory of change developed through consultation and consensus-building work is presented in Appendix 2, Figure 2. Primarily, this conceptualises Young SMILES in view of the problems faced by CAPRI, Young SMILES inputs and change mechanisms, primary outcome(s) for children and the impact that this has on associated risk of negative outcomes.
Conclusion
Through consultation with professional stakeholders, children and their parents, we identified a need for a more child-centred, community-based approach towards supporting CAPRI in their daily lives. In response, we have co-developed an intervention that accommodates a diversity of need for CAPRI, which can be validated with quantifiable child-centred outcome measures. This is the first multicontext intervention to improve the HRQoL among this vulnerable group in the UK.