Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study.

OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. STUDY DESIGN: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care. CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.

Multimodal intervention to improve the transition of patients with inflammatory bowel disease from pediatric to adult care: protocol for a randomized controlled trial.

BACKGROUND: Transition in care is defined as the "purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers." Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). The development of a transition program using a biopsychosocial approach will improve the standards for healthcare delivery to transitioning IBD patients. This is a protocol for a structured randomized controlled trial (RCT) to assess the clinical and implementation effectiveness of a multimodal intervention focused on improving patient function, transition readiness and outcomes among AYA patients with IBD being cared for at pediatric centers in Canada. METHODS: This multi-center RCT is a type 1 hybrid effectiveness-implementation trial to evaluate effectiveness of the intervention and how it can be implemented more widely after the trial. We will include patients aged 16.0-17.5 years. The intervention program consists of 4 core components: (1) individualized assessment, (2) transition navigator, (3) virtual patient skills-building with a focus on building resilience, self-management and self-efficacy, and (4) a virtual structured education program. The control group will undergo standard-of-care defined by each participating center. The primary outcome will be the IBD Disability Index, a validated measure to assess patient functioning. Secondary outcomes include transition readiness and success, anxiety and depression scales, and health service utilization rates. Additionally, we will measure implementation outcomes and related barriers and facilitators for the intervention program. DISCUSSION: The type 1 hybrid effectiveness-implementation design will allow for the development of a feasible, sustainable, and acceptable final intervention model. The intervention will consist of modules that can be accessed in an online, virtual platform. The implementation will allow centralization of interventions and funding in order to minimize the impact on local clinical practice or hospital resources. The authors anticipate that the main study limitation will relate to study subjects not completely adhering to every component of the intervention, which will be evaluated and addressed using the implementation science approach. TRIAL REGISTRATION: NCT05221281. Registry: ClinicalTrials.gov. Date of registration: February 2, 2022. https://clinicaltrials.gov/ct2/show/NCT05221281 .

Understanding the implementation of evidence-informed policies and practices from a policy perspective: a critical interpretive synthesis.

BACKGROUND: The fields of implementation science and knowledge translation have evolved somewhat independently from the field of policy implementation research, despite calls for better integration. As a result, implementation theory and empirical work do not often reflect the implementation experience from a policy lens nor benefit from the scholarship in all three fields. This means policymakers, researchers, and practitioners may find it challenging to draw from theory that adequately reflects their implementation efforts. METHODS: We developed an integrated theoretical framework of the implementation process from a policy perspective by combining findings from these fields using the critical interpretive synthesis method. We began with the compass question: How is policy currently described in implementation theory and processes and what aspects of policy are important for implementation success? We then searched 12 databases as well as gray literature and supplemented these documents with other sources to fill conceptual gaps. Using a grounded and interpretive approach to analysis, we built the framework constructs, drawing largely from the theoretical literature and then tested and refined the framework using empirical literature. RESULTS: A total of 11,434 documents were retrieved and assessed for eligibility and 35 additional documents were identified through other sources. Eighty-six unique documents were ultimately included in the analysis. Our findings indicate that policy is described as (1) the context, (2) a focusing lens, (3) the innovation itself, (4) a lever of influence, (5) an enabler/facilitator or barrier, or (6) an outcome. Policy actors were also identified as important participants or leaders of implementation. Our analysis led to the development of a two-part conceptual framework, including process and determinant components. CONCLUSIONS: This framework begins to bridge the divide between disciplines and provides a new perspective about implementation processes at the systems level. It offers researchers, policymakers, and implementers a new way of thinking about implementation that better integrates policy considerations and can be used for planning or evaluating implementation efforts.

Finding harmony within dissonance: Engaging patients, family/caregivers and service providers in research to fundamentally restructure relationships through integrative dynamics.

BACKGROUND: Deeply divided ideological positions challenge collaboration when engaging youth with mental disorders, caregivers and providers in mental health research. The integrative dynamics (ID) approach can restructure relationships and overcome 'us vs them' thinking. OBJECTIVE: To assess the extent to which an experience-based co-design (EBCD) approach to patient and family engagement in mental health research aligned with ID processes. METHODS: A retrospective case study of EBCD data in which transitional-aged youth (n = 12), caregivers (n = 8) and providers (n = 10) co-designed prototypes to improve transitions from child to adult services. Transcripts from focus groups and a co-design event, co-designed prototypes, the resulting model, evaluation interviews and author reflections were coded deductively based on core ID concepts, while allowing for emergent themes. Analysis was based on pattern matching. Triangulation across data sources, research team, and youth and caregiver reflections enhanced rigour. FINDINGS: The EBCD focus group discussions of touchpoints in experiences aligned with ID processes of acknowledging the past, by revealing the perceived identity mythos of each group, and allowing expression of and working through emotional pain. These ID processes were briefly revisited in the co-design event, where the focus was on the remaining ID processes: building cross-cutting connections and reconfiguring relationships. The staged EBCD approach may facilitate ID, by working within one's own perspective prior to all perspectives working together in co-design. CONCLUSION: Researchers can augment patient engagement approaches by applying ID principles with staged integration of groups to improve relations in mental health systems, and EBCD shows promise to operationalize this.

Codesigning health and other public services with vulnerable and disadvantaged populations: Insights from an international collaboration.

BACKGROUND: Codesign has the potential to transform health and other public services. To avoid unintentionally reinforcing existing inequities, better understanding is needed of how to facilitate involvement of vulnerable populations in acceptable, ethical and effective codesign. OBJECTIVE: To explore citizens' involvement in codesigning public services for vulnerable groups, identify challenges and suggest improvements. DESIGN: A modified case study approach. Pattern matching was used to compare reported challenges with a priori theoretical propositions. SETTING AND PARTICIPANTS: A two-day international symposium involved 28 practitioners, academics and service users from seven countries to reflect on challenges and to codesign improved processes for involving vulnerable populations. INTERVENTION STUDIED: Eight case studies working with vulnerable and disadvantaged populations in three countries. RESULTS: We identified five shared challenges to meaningful, sustained participation of vulnerable populations: engagement; power differentials; health concerns; funding; and other economic/social circumstances. In response, a focus on relationships and flexibility is essential. We encourage codesign projects to enact a set of principles or heuristics rather than following pre-specified steps. We identify a set of principles and tactics, relating to challenges outlined in our case studies, which may help in codesigning public services with vulnerable populations. DISCUSSION AND CONCLUSIONS: Codesign facilitators must consider how meaningful engagement will be achieved and how power differentials will be managed when working with services for vulnerable populations. The need for flexibility and responsiveness to service user needs may challenge expectations about timelines and outcomes. User-centred evaluations of codesigned public services are needed.

Lost in transition or translation? Care philosophies and transitions between child and youth and adult mental health services: a systematic review.

Background: Differences in care philosophies may influence transitions from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS). Aims: To review literature about CAMHS and AMHS care philosophies and their influence on transitions. Method: MEDLINE, PsycINFO, Embase and CINAHL databases were searched electronically using keywords related to transitions, youth and mental disorders. Content relating to philosophies of care was searched manually. Descriptive themes were extracted and the analysis suggested four hypotheses of how care philosophies influence transitions. Results: Of the 1897 identified articles, 12 met eligibility criteria. Findings reveal consistent differences in care philosophies between CAMHS (developmental approach, involving families and nurturing) and AMHS (clinical/diagnosis-focus, emphasis on client autonomy and individual responsibility). Conclusions: Better understanding of philosophical differences and collaborative planning and service delivery may foster shared approaches in CAMHS and AMHS to better meet the needs of transitioning youth.

Co-designing for quality: Creating a user-driven tool to improve quality in youth mental health services.

BACKGROUND: Although high quality mental health care for children and youth is a goal of many health systems, little is known about the dimensions of quality mental health care from users' perspectives. We engaged young people, caregivers and service providers to share experiences, which shed light on quality dimensions for youth mental health care. METHODS: Using experience-based co-design, we collected qualitative data from young people aged 16-24 with a mental disorder (n = 19), identified caregivers (n = 12) and service providers (n = 14) about their experiences with respect to youth mental health services. Experience data were collected using multiple approaches including interviews, a suite of online and smartphone applications (n = 22), and a co-design event (n = 16) and analysed to extract touch points. These touch points were used to prioritize and co-design a user-driven prototype of a questionnaire to provide feedback to service providers. FINDINGS: Young people, caregiver and service provider reports of service experiences were used to identify aspects of care quality at eight mental health service contact points: Access to mental health care; Transfer to/from hospital; Intake into hospital; Services provided; Assessment and treatment; Treatment environment; and Caregiver involvement in care. In some cases, low quality care was harmful to users and their caregivers. Young people co-designed a prototype of a user-driven feedback questionnaire to improve quality of service experiences that was supported by service providers and caregivers at the co-design event. CONCLUSION: By using EBCD to capture in-depth data regarding experiences of young people, their caregivers and service providers, study participants have begun to establish a baseline for acceptable quality of mental health care for young people.