Involvement of children and young people in the conduct of health research: A rapid umbrella review.

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

Opening Pandora's box - key facilitators of practice change in detecting and responding to childhood adversity - a practitioner perspective.

BACKGROUND: Childhood adversities worsen physical and mental health across the lifespan. Health and social care practitioners play a key role in identifying and responding to childhood adversity, however, may be reluctant to do so due to a perceived lack of services to refer to, time pressures and a deficit of training and confidence. We aimed to (1) quantify changes in practitioner comfort and confidence to identify and respond to childhood adversity following a multimodal intervention within an integrated child and family health and social care hub and (2) to understand barriers and facilitators of practice change. METHODS: Hub practitioners were surveyed about their competence and comfort to directly ask about and confidence to respond to adversity at baseline and then at six and twelve months post training. Interviews were undertaken to explore practitioner barriers and enablers of practice change. Interviews were recorded, transcribed verbatim, and analysed using reflexive thematic analysis. The theoretical domains framework was used to identify the key drivers of practice change. RESULTS: Fifteen of 18 practitioners completed all three surveys and 70% reported increased competence and comfort to directly ask, and confidence to respond across a range of adversities over the 12-month intervention. Twenty-one practitioners completed interviews. Six themes were identified as either facilitators or barriers to practice change. Facilitator themes included (1) connection matters, (2) knowledge provides assurance, (3) confidence in ability and (4) choosing change. Barrier themes were (1) never enough time and (2) opening Pandora's box. Following analysis, key drivers of practice change were 'social influence', 'belief in capability', 'knowledge' and 'behaviour regulation' while barriers to practice change were 'environmental context and resources' and 'emotion'. CONCLUSIONS: Practitioners reported improved confidence in identifying and responding to adversity through a multimodal intervention delivered in an integrated Child and Family Hub. Changing practice requires more than just education and training. Opportunities for social connection and coaching to improve self-confidence and perceived competence are needed to overcome the fear of opening Pandora's box.

The performance of the EQ-HWB-S as a measure of quality-of-life of caregivers in families that have experienced adverse events.

PURPOSE: The recently developed EQ Health and Wellbeing Instrument (EQ-HWB) is a broad, generic measure of quality-of-life designed to be suitable for caregivers. The aim of this study was to investigate performance and validity of the 9-item version (EQ-HWB-S) for caregivers where families had experienced adverse-life-events. METHODS: Using survey data from caregivers of children aged 0-8 years attending a community-health centre in 2021-2022, the general performance, feasibility, convergent and known-group validity, responsiveness-to-change, and test-retest reliability of the EQ-HWB-S was assessed. Twelve semi-structured interviews were conducted with survey respondents to assess acceptability and content validity. RESULTS: The sample included  234 caregivers at baseline (81% female, mean age 36-years, 38% Australian-born) and 190 at 6-months follow-up. Most EQ-HWB-S item responses were evenly spread, except for 'Mobility'. The instrument showed good convergent validity with psychological distress (Kessler 6 (K6)) and personal-wellbeing (PWI-A) scales. EQ-HWB-S level sum-scores and preference-weighted scores were significantly different in all known-group analyses, in expected directions, and the instrument was responsive to change. For test-retest reliability, Intraclass Correlation Coefficients were excellent and individual item Kappa scores were moderate. The instrument was well received by interviewees who found the questions clear and relevant. The items were appropriate for parents experiencing adversity and carers of children with additional needs. CONCLUSION: The EQ-HWB-S appeared valid, responsive to change, feasible, and well accepted by caregivers. By demonstrating the validity of the EQ-HWB-S in this hard-to-reach population of caregivers in families experiencing adverse events, this study adds to existing international evidence supporting its use.

Identifying Service, Research and Policy priorities for preventing the impacts of family adversity on children's mental health: An Australian national resource allocation study with professional and lived experience experts.

OBJECTIVES: The objective of this study was to develop Service, Research and Policy priorities to prevent the impact of family adversity on child mental health and determine comparative priorities of diverse stakeholders to those with lived experience of adversity. METHODS: Value-weighting approach conducted in a staged process: (i) professionals and experts with lived experience from health, education, justice and social care sectors attended a national symposium to identify priorities for family adversity and mental health and (ii) a subsequent resource allocation survey gathered views from participants and external experts on symposium priorities. RESULTS: Consensus was reached on priorities. Service priorities included establishing intersectoral hubs for children and families and early childhood nurse home-visiting programs. Research priorities included scaling up evidence-based interventions and evaluating cross-sector, flexible funding models for services addressing childhood adversity. Policy priorities included developing evidence-based policies with evaluation and implementation plans and flexible funding models to support integrated care. CONCLUSIONS: Our results provide detailed and actionable clarity on next steps to address family adversities. IMPLICATIONS FOR PUBLIC HEALTH: The priorities call for a focus on cross-sectoral approaches to preventing or mitigating the effects of family adversity. The current Australian policy environment provides a timely opportunity to action the proposed interventions.

Co-designing an Integrated Health and Social Care Hub With and for Families Experiencing Adversity.

Introduction: Integrated care research often fails to adequately describe co-design methods. This article outlines the process, principles and tools to co-design an integrated health and social care Hub for families experiencing adversity. Research methods: The Child and Family Hub was co-designed in four stages: (1) partnership building and stakeholder engagement, (2) formative research, (3) persona development and (4) co-design workshops and consultations. Local families, community members and intersectoral practitioners were engaged at each stage. The co-design workshops employed a human-centred design process and were evaluated using the Public and Patient Engagement Evaluation Tool (PEET). Results: 121 family participants and 80 practitioners were engaged in the Hub's co-design. The PEET highlighted the co-design team's satisfaction achieved by community members working alongside practitioners to generate mutual learning. Resourcing was a key challenge. Discussion: Human-centred design offered a systematic process and tools for integrating formative evidence with lived and professional experience in the Hub's co-design. Applying community engagement principles meant that a diverse range of stakeholders were engaged across all stages of the project which built trust in and local ownership of the Hub model. Conclusion: Co-design research with families experiencing adversity should attend to language, engagement methods, team composition and resourcing decisions.

Identifying and responding to family adversity in Australian community and primary health settings: a multi-site cross sectional study.

Background: Unaddressed family adversity has potentially modifiable, negative biopsychosocial impacts across the life course. Little is known about how Australian health and social practitioners identify and respond to family adversity in community and primary health settings. Objective: To describe, in two Australian community health services: (1) the number of adversities experienced by caregivers, (2) practitioner identification of caregivers experiencing adversity, (3) practitioner response to caregivers experiencing adversity, and (4) caregiver uptake of referrals. Methods: Survey of caregivers of children aged 0-8 years attending community health services in Victoria and New South Wales (NSW). Analysis described frequencies of caregiver self-reported: (1) experiences of adversity, (2) practitioner identification of adversity, (3) practitioner response to adversity, and (4) referral uptake. Analyses were sub-grouped by three adversity domains and site. Results: 349 caregivers (Victoria: n = 234; NSW: n = 115) completed the survey of whom 88% reported experiencing one or more family adversities. The median number of adversities was 4 (2-6). Only 43% of participants were directly asked about or discussed an adversity with a practitioner in the previous 6 months (Victoria: 30%; NSW: 68%). Among caregivers experiencing adversity, 30% received direct support (Victoria: 23%; NSW: 43%), and 14% received a referral (Victoria: 10%; NSW: 22%) for at least one adversity. Overall, 74% of caregivers accepted referrals when extended. Conclusion: The needs of Australian families experiencing high rates of adversity are not systematically identified nor responded to in community health services. This leaves significant scope for reform and enhancement of service responses to families experiencing adversity.

Screening for Adverse Childhood Experiences in Children: A Systematic Review.

CONTEXT: Adverse childhood experiences (ACEs) are associated with increased risk of poor mental health outcomes. Although there is interest in screening for ACEs for early identification and intervention, it is not known whether screening improves outcomes for children. OBJECTIVE: To systematically review whether screening for ACEs in children leads to an increase in (1) identification of ACEs, (2) referrals to services, (3) increased uptake of services, and (4) improved mental health outcomes for children and parents. DATA SOURCES: Ovid Medline, PsycINFO, CINAHL, and Center for Clinical and Translational Research electronic databases were searched between 2009 and 2021. STUDY SELECTION: Studies were included if researchers screened for current ACEs in children aged 0 to 12 years and they had a control comparison. DATA EXTRACTION: Information was extracted, including study characteristics, sample demographics, screening tool characteristics, referral rates to services, uptake rates, and mental health outcomes. RESULTS: A total of 5816 articles were screened, with 4 articles meeting inclusion criteria. Screening for ACEs increases identification of adversity and may increase referrals to services. There are limited data about whether this leads to an increase in referral uptake by families. There are no reported data addressing mental health outcomes. LIMITATIONS: There are few published control trials of moderate quality. CONCLUSIONS: There is limited evidence that screening for ACEs improves identification of childhood adversity and may improve referrals. If we are to realize the hypothesized benefits of ACEs screening on child and parent mental health, it is essential to understand the barriers for families taking up referrals.

Integrated Child and Family Hub models for detecting and responding to family adversity: protocol for a mixed-methods evaluation in two sites.

INTRODUCTION: Integrated community healthcare Hubs may offer a 'one stop shop' for service users with complex health and social needs, and more efficiently use service resources. Various policy imperatives exist to implement Hub models of care, however, there is a dearth of research specifically evaluating Hubs targeted at families experiencing adversity. To contribute to building this evidence, we propose to co-design, test and evaluate integrated Hub models of care in two Australian community health services in low socioeconomic areas that serve families experiencing adversity: Wyndham Vale in Victoria and Marrickville in New South Wales. METHODS AND ANALYSIS: This multisite convergent mixed-methods study will run over three phases to (1) develop the initial Hub programme theory through formative research; (2) test and, then, (3) refine the Hub theory using empirical data. Phase 1 involves co-design of each Hub with caregivers, community members and practitioners. Phase 2 uses caregiver and Hub practitioner surveys at baseline, and 6 and 12 months after Hub implementation, and in-depth interviews at 12 months. Two stakeholder groups will be recruited: caregivers (n=100-200 per site) and Hub practitioners (n=20-30 per site). The intervention is a co-located Hub providing health, social, legal and community services with no comparator. The primary outcomes are caregiver-reported: (i) identification of, (ii) interventions received and/or (iii) referrals received for adversity from Hub practitioners. The study also assesses child, caregiver, practitioner and system outcomes including mental health, parenting, quality of life, care experience and service linkages. Primary and secondary outcomes will be assessed by examining change in proportions/means from baseline to 6 months, from 6 to 12 months and from baseline to 12 months. Service linkages will be analysed using social network analysis. Costs of Hub implementation and a health economics analysis of unmet need will be conducted. Thematic analysis will be employed to analyse qualitative data. ETHICS AND DISSEMINATION: Royal Children's Hospital and Sydney Local Health District ethics committees have approved the study (HREC/62866/RCHM-2020). Participants and stakeholders will receive results through meetings, presentations and publications. TRIAL REGISTRATION NUMBER: ISRCTN55495932.

Prioritising interventions for preventing mental health problems for children experiencing adversity: a modified nominal group technique Australian consensus study.

BACKGROUND: Despite the well-established link between childhood adversity and mental health problems, there is a dearth of evidence to inform decision making about the most acceptable and feasible interventions for preventing mental health problems for children experiencing adversity. Expert consensus is an important input into evidence-informed policy and practice but is often employed at the national level which misses important local contextual factors shaping decision making. This study aimed to: (1) reach consensus on local priority interventions for preventing mental health problems for children living with adversity in Wyndham, Victoria; and (2) understand the enabling factors and barriers to implementing these interventions. METHODS: This study employed six online modified nominal group technique (NGT) workshops with 19 stakeholders; intersectoral service providers from health, social and education sectors and caregivers of children aged 0-8 years. RESULTS: Three interventions reached consensus among the mixed stakeholder groups as being a high or very high priority for implementation in Wyndham: nurse home visiting, parenting programs and community-wide programs. Key rationales were the ability for these interventions to act as a gateway for families to increase their knowledge about topics immediately relevant to them (i.e. parenting), increase their knowledge about available supports and build relationships with service providers. CONCLUSIONS: Local priorities for preventing mental health problems for children living with adversity emphasized relational approaches to service provision and were shaped by the availability of existing interventions and supports in the locality. The NGT was found to be an effective method for prioritising evidence-based practice interventions in health settings, engaging local stakeholders, and identifying enablers and barriers to implementation.