A community-based intervention (Young SMILES) to improve the health-related quality of life of children and young people of parents with serious mental illness: randomised feasibility protocol

Children and young people of parents with mental illness (COPMI) are at risk of poor mental, physical and emotional health, which can persist into adulthood. They also experience poorer social outcomes and wellbeing as well as poorer quality of life than their peers with ‘healthy’ parents. The needs of COPMI are likely to be significant; however, their prevalence is unknown, although estimates suggest over 60% of adults with a serious mental illness have children. Many receive little or no support and remain ‘hidden’, stigmatised or do not regard themselves as ‘in need’. Recent UK policies have identified supporting COPMI as a key priority, but this alone is insufficient and healthrelated quality of life has been neglected as an outcome

Developing an Intervention to Improve the Health Related Quality of Life in Children and Young People With Serious Parental Mental Illness

Introduction: Children and adolescents living with parental mental illness (CAPRI) are at increased risk of behavioral, social and educational difficulties, mental and physical health problems and have poorer quality of life (QoL). Adverse outcomes can extend into adulthood but are not inevitable. Recent policy and stakeholder consultation recognize the urgent need for interventions that extend beyond objective, service-led measures of health. Systematic evidence synthesis has demonstrated a lack of evidence-based interventions for enhancing holistic, child-centered outcomes. We aimed to co-develop a manualised, community-based intervention to improve QoL in CAPRI. Precedence was given to the QoL domains that were prioritized by stakeholders and deemed feasible to modify within a health and social care context. We describe here the modeling phase of developing the intervention emphasizing co-production activities with CAPRI, their families and professionals who support them.Methods: Semi-structured interviews and focus groups with CAPRI (n = 14), parents (n = 7), and professionals from health, social and educational sectors (n = 31) in the UK. Topic guides qualitatively explored participants prior experiences, unmet needs, perceived barriers and facilitators to receiving/delivering support, and their ideals for a new intervention. Findings were synthesized with existing research evidence and presented to a mixed panel of clinical academics and health and social care professionals. A consensus exercise was used to identify the preferred structure, format and content of the manualised intervention.Results: An 8-week group intervention for 6–16 year olds and their parents, called Young SMILES, has been co-developed along with associated training materials for facilitators. Each session addresses an identified need, but is underpinned by cross-cutting themes pertaining to mental health literacy, parent-child communication, and problem solving skills. Sessions are delivered by two trained facilitators and held in accessible and acceptable community locations weekly for 2 h.Conclusion: Young SMILES captures a broad age range and level of need for CAPRI and can be evaluated with quantifiable child-centered outcomes. In line with current policy directives, this is the first UK-based, multi-context intervention to improve QoL in this population. Implementation and referral mechanisms are currently being evaluated in a multi-site feasibility trial

Vocal brain development in infants of mothers with serious mental illness (CAPRI-Voc):study protocol

Improving the lives of children and adolescents with parental mental illness (CAPRI) remains an urgent political and public health concern for the UK and European Union. Recurrent parental mental illness is believed to lead to fractures in the family, academic and social lives of these children, yet interventions are poorly targeted and non-specific. Part of an interdisciplinary programme of work (the CAPRI Programme; grant number: 682741), CAPRI-Voc aims to achieve two goals: first, to test the feasibility of our longitudinal imaging paradigm in mother-infant pairs where the mother has a diagnosis of severe mental illness. Second, to compare development of vocal processing in these infants with infants in the general population

An intervention to improve the quality of life in children of parents with serious mental illness:The young SMILES feasibility RCT

Background Quality of life for children and adolescents living with serious parental mental illness can be impaired, but evidence-based interventions to improve it are scarce. Objective Co-production of a child-centred intervention [called Young Simplifying Mental Illness plus Life Enhancement Skills (SMILES)] to improve the health-related quality of life of children and adolescents living with serious parental mental illness, and evaluating its acceptability and feasibility for delivery in NHS and community settings. Design Qualitative and co-production methods informed the development of the intervention (Phase I). A feasibility randomised controlled trial was designed to compare Young SMILES with treatment as usual (Phase II). Semistructured qualitative interviews were used to explore acceptability among children and adolescents living with their parents, who had serious mental illness, and their parents. A mixture of semistructured qualitative interviews and focus group research was used to examine feasibility among Young SMILES facilitators and referrers/non-referrers. Setting Randomisation was conducted after baseline measures were collected by the study co-ordinator, ensuring that the blinding of the statistician and research team was maintained to reduce detection bias. Participants Phase I: 14 children and adolescents living with serious parental mental illness, seven parents and 31 practitioners from social, educational and health-related sectors. Phase II: 40 children and adolescents living with serious parental mental illness, 33 parents, five referrers/non-referrers and 16 Young SMILES facilitators. Intervention Young SMILES was delivered at two sites: (1) Warrington, supported by the National Society for the Prevention of Cruelty to Children (NSPCC), and (2) Newcastle, supported by the NHS and Barnardo’s. An eight-session weekly group programme was delivered, with four to six children and adolescents living with serious parental mental illness per age-appropriate group (6–11 and 12–16 years). At week 4, a five-session parallel weekly programme was offered to the parents/carers. Sessions lasted 2 hours each and focused on improving mental health literacy, child–parent communication and children’s problem-solving skills. Main outcome measures Phase ll children and parents completed questionnaires at randomisation and then again at 4 and 6 months post randomisation. Quality of life was self-reported by children and proxy-reported by parents using the Paediatric Quality of Life questionnaire and KIDSCREEN. Semistructured interviews with parents (n = 14) and children (n = 17) who participated in the Young SMILES groups gathered information about their motivation to sign up to the study, their experiences of participating in the group sessions, and their perceived changes in themselves and their family members following intervention. Further interviews with individual referrers (n = 5) gathered information about challenges to recruitment and randomisation. Two focus groups (n = 16) with practitioners who facilitated the intervention explored their views of the format and content of the Young SMILES manual and their suggestions for changes. Results A total of 35 families were recruited: 20 were randomly allocated to Young SMILES group and 15 to treatment as usual. Of those, 28 families [15/20 (75%) in the intervention group and 13/15 (87%) in the control group] gave follow-up data at the primary end point (4 months post baseline). Participating children had high adherence to the intervention and high completion rates of the questionnaires. Children and adolescents living with their parents, who had serious mental illness, and their parents were mainly very positive and enthusiastic about Young SMILES, both of whom invoked the benefits of peer support and insight into parental difficulties. Although facilitators regarded Young SMILES as a meaningful and distinctive intervention having great potential, referrers identified several barriers to referring families to the study. One harm was reported by a parent, which was dealt with by the research team and the NSPCC in accordance with the standard operating procedures. Limitations The findings from our feasibility study are not sufficient to recommend a fully powered trial of Young SMILES in the near future. Although it was feasible to randomise children and adolescents living with serious parental mental illness of different ages to standardised, time-limited groups in both NHS and non-NHS settings, an intervention like Young SMILES is unlikely to address underlying core components of the vulnerability that children and adolescents living with serious parental mental illness express as a population over time. Conclusions Young SMILES was widely valued as unique in filling a recognised gap in need. Outcome measures in future studies of interventions for children and adolescents living with serious parental mental illness are more likely to capture change in individual risk factors for reduced quality of life by considering their unmet need, rather than on an aggregate construct of health-related quality of life overall, which may not reflect these young people’s needs. Future work A public health approach to intervention might be best. Most children and adolescents living with serious parental mental illness remain well most of the time, so, although their absolute risks are low across outcomes (and most will remain resilient most of the time), consistent population estimates find their relative risk to be high compared with unexposed children. A public health approach to intervention needs to be both tailored to the particular needs of children and adolescents living with serious parental mental illness and agile to these needs so that it can respond to fluctuations over time. Trial registration Current Controlled Trials ISRCTN36865046