Sustaining efforts to improve family well-being with parents with mental ill health and substance (mis)use.

Research conducted over the past 30 years has developed an extensive body of knowledge on families where parents experience mental ill health and/or substance (mis)use, and interventions that are effective in improving their outcomes. A more recent focus has also explored the importance and nuance of implementation. This perspective article reflects on the concept and practice of sustainability within this body of work and considers underlying assumptions in the field about the goal and direction of interventions that make clarity about sustainability difficult. We identify challenges for understanding sustainability, relating to how and who defines it, what is measured and the impact of context. We conclude by considering how we might be better able to plan and design for sustainability within this field.

Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.

Importance: People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population. Objective: To develop the first-ever lived experience-led research agenda to address early mortality in people with SMI. Evidence Review: A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling. Findings: The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy. Conclusions and Relevance: The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience-led research priorities as an option to move the field forward.

Mothers with Intellectual/Developmental Disabilities and Behavioral Health Conditions and Community Experts Provide Recommendations for Treatment/Services, Systems, and Research.

Mothers with intellectual and developmental disabilities (IDD) are vulnerable to perinatal complications and adverse outcomes. Their vulnerabilities may also be exacerbated by co-occurring behavioral health (BH) conditions. Their wellbeing may be compromised by a lack of tailored treatments or by treatments and services that are inaccessible, irrelevant, and/or ineffective. A five-session virtual Ideas Lab workshop series was implemented to bring together diverse community experts (n = 30), including mothers with IDD/BH, to discuss the experiences of mothers and set priorities for treatment/services, systems, and research. Participants completed background and evaluation surveys and brainstormed, grouped, and ranked items of importance, which fell into two broad categories: (1) cross-cutting themes drawn from lived experience with recommendations applicable to all substantive domains (i.e., accessibility, diversity, adverse experiences and trauma, and trust) and (2) substantive themes with specific recommendations for treatment/services and systems (i.e., services and supports, peer support, provider practices and training, and systems navigation/transformation). Research recommendations were generated in all discussions and emerged in relation to all themes, underscoring the importance of including mother-driven questions and priorities in research agendas and strengthening researcher training and skills to engage mothers with IDD/BH and other community members actively, and in meaningful ways.

Facilitators and Barriers to Care Coordination Between Medicaid Accountable Care Organizations and Community Partners: Early Lessons From Massachusetts.

Care coordination is central to health care delivery system reform efforts to control costs, improve quality, and enhance patient outcomes, especially for individuals with complex medical and social needs. The potential impact of addressing health-related social needs further illustrates the importance of coordinating health care services with community-based organizations that provide social services and support. This study offers early findings from a unique approach to care coordination delivered by 17 Medicaid Accountable Care Organizations and 27 partnering community-based organizations for individuals with behavioral health conditions and/or those needing long-term services and supports. Interview data from 54 key informants were qualitatively analyzed to understand factors affecting cross-sector integrated care. Key themes emerged, essential to implementing the new model statewide: clarifying roles and responsibilities; promoting communication; facilitating information exchange; developing workforce capacity; building essential relationships; and responsive, supportive program management through real-time feedback, financial incentives, technical assistance, and flexibility from the state Medicaid program.

Guidelines to Establish an Equitable Mobile Health Ecosystem.

Mobile health (mHealth)-that is, use of mobile devices, such as mobile phones, monitoring devices, personal digital assistants, and other wireless devices, in medical care-is a promising approach to the provision of support services. mHealth may aid in facilitating monitoring of mental health conditions, offering peer support, providing psychoeducation (i.e., information about mental health conditions), and delivering evidence-based practices. However, some groups may fail to benefit from mHealth despite a high need for mental health services, including people from racially and ethnically disadvantaged groups, rural residents, individuals who are socioeconomically disadvantaged, and people with disabilities. A well-designed mHealth ecosystem that considers multiple elements of design, development, and implementation can afford disadvantaged populations the opportunity to address inequities and facilitate access to and uptake of mHealth. This article proposes inclusion of the following principles and standards in the development of an mHealth ecosystem of equity: use a human-centered design, reduce bias in machine-learning analytical techniques, promote inclusivity via mHealth design features, facilitate informed decision making in technology selection, embrace adaptive technology, promote digital literacy through mHealth by teaching patients how to use the technology, and facilitate access to mHealth to improve health outcomes.

Peer Support at the Intersection of Disability and Opioid (Mis)Use: Key Stakeholders Provide Essential Considerations.

Individuals with disabilities may experience higher rates of opioid/substance use disorders (OUD/SUD) than other individuals and are likely vulnerable to unmet treatment needs. Peer support may be beneficial to these individuals, given the evidence of benefits in target populations with similar needs and the potential for overcoming barriers to treatment suggested in the available literature. The objective of this exploratory study was to specify essential considerations in adapting peer support for this population. Diverse key stakeholders (n = 16) were interviewed to explore the experiences, needs, and available supports for individuals with disabilities and OUD/SUD. A Peer Support Work Group including members with lived experience advised each component of the study. Semi-structured interview data were content analyzed and memos generated to summarize themes related to the research question. Participants reported extensive professional and personal experience in human services, disability, and recovery. Emergent themes included the importance of accessibility and model fit, the notion of "peerness" and peer match, and essential aspects of peer recruitment, training, and support. An accessible, acceptable, effective model of peer support requires particular attention to the needs of this diverse and varied population, and the contexts in which they are identified, referred, and engaged in services.

Virtual Community Engagement Studio (V-CES): Engaging Mothers With Mental Health and Substance Use Conditions in Research.

Active engagement of community stakeholders is increasingly encouraged in behavioral health research, often described as a co-production approach. Community stakeholders (e.g., patients, providers, policy makers, advocates) play a leading role together with research investigators in conducting the various phases of research, including conceptualization, design, implementation, and the interpretation and dissemination of findings. The concept of co-production has promising benefits for both the target population and the research outcomes, such as producing person-centered interventions with greater acceptability and usability potential. However, it is often the case that neither researchers nor community members are trained or skilled in co-production methods. The field of behavioral health research lacks tools and methods to guide and promote the engagement of diverse stakeholders in the research process. The purpose of this methods paper is to describe the Virtual Community Engagement Studio (V-CES) as a new method for engaging vulnerable populations like mothers with mental health and substance use conditions in research. We piloted the method in collaboration with the Maternal Mental Health Research Collaborative (MMHRC), focusing on one of the most vulnerable, under-researched populations, mothers coping with mental health and/or substance abuse disorders. Our pilot included mothers and providers who work with them as Community Experts to inform all phases of research design and implementation, and the interpretation and application of findings. The aim of this article is to describe the V-CES as a powerful tool that supports the engagement of mothers with mental health and/or substance use disorders and other community stakeholders in research, to provide examples of its use, and to make recommendations for future use, based on lessons learned. The V-CES toolkit is available for use with this target population as well as others.

The ParentingWell Practice Approach: Adaptation of Let's Talk About Children for Parents With Mental Illness in Adult Mental Health Services in the United States.

Background: Despite the importance of family and parent-focused practice, there has been a dearth of research on interventions for parents with mental illness. This paper describes the process and outcome of adapting an evidence-based intervention, Let's Talk about Children (LTC), in the context of adult mental health services in Massachusetts, United States. Methods: Specific objectives included: (1) to specify the core components, functions, and principles of LTC essential to adapting the intervention (i.e., program theory), (2) to consider contextual factors related to the new setting; (3) to pre-test the adapted materials with diverse practitioners; and (4) to compile the program model and materials (i.e., the practice profile) for use by adult mental health service providers in Massachusetts. The Adaptation Team included individuals with expertise in psychiatric rehabilitation and clinical care, policymaking, program development and research, and parents. Activities occurred between 2015-2019 and included: (1) consulting with experts to specify the core elements and theory behind the selected intervention (i.e., with the LTC purveyor and international experts); (2) consulting with key stakeholders for input regarding the Massachusetts target population and context to inform adaptations (i.e., individual and group key informant interview sessions); (3) pretesting the initial adapted materials (i.e., training and coaching sessions with adult mental health practitioners); and (4) using feedback to refine and compile the final intervention manual (i.e., the ParentingWell Practice Profile). Participants reflected diverse, oftentimes multiple roles and perspectives, including those of parents with mental illness, adult children, and family members. Results: ParentingWell is practitioner- and setting-agnostic, addresses parenting across the lifespan, fits into the routine workflow, and builds on practitioners' existing skills. Eight themes emerged, which were translated into four core elements (engage, explore, plan, access and advocate) consistent with Self-Determination Theory and four underlying principles (trauma-informed, strengths-based, family-focused, culturally sensitive) in keeping with the LTC model. The ParentingWell Practice Profile operationalizes each core element and addresses the underlying principles. Conclusion: ParentingWell makes talking about parenting and family experiences a routine part of the therapeutic conversation with adults with mental illness. Future research will test the adaptation, implementation, and impact of ParentingWell.

Perspective: Implications of the COVID-19 Pandemic for Family-Focused Practice With Parents With Mental Illness and Their Families.

The goal of this perspective piece is to suggest challenges to family-focused practice with parents with mental illness and their children that have emerged during the COVID-19 pandemic. We discuss implications for practice, policy, and research that will benefit from rigorous study in the future, as we sift through lessons learned. The impact of the pandemic on the mental health and well-being of people around the world has been documented. Common adaptations in service delivery have included a shift to telehealth and digital tools. The pandemic has posed challenges to practice across the EASE Framework components for family-focused practice (i.e., Engage, Assess, Support, and Educate) for both parents/families and practitioners. Governmental policy and funding responses will be critical to addressing the impact of stresses, disruptions and losses endured during the past months. Pandemic experiences and consequences have implications for research measures, methods, and outcomes, given the dramatic changes in people's lives and the contexts in which they live. The shift to research implementation in virtual environments has resulted in challenges in maintaining confidentiality, and the privacy and security of data. As we move forward, it will be important to acknowledge the remaining uncertainty about the future and accommodate the profound changes in family life, professional practice, and research implementation related to the pandemic in our efforts to demonstrate the effectiveness of positive lessons learned while developing new approaches for dealing with the negative consequences of the pandemic.

The ParentingWell Learning Collaborative Feasibility Study: Training Adult Mental Health Service Practitioners in a Family-Focused Practice Approach.

This study investigates the feasibility and impact of the ParentingWell Learning Collaborative (PWLC) model in supporting mental health practitioners in implementing the family-focused ParentingWell practice approach with adults with mental illness. An exploratory design and qualitative methods were employed. Practitioners (n = 29) participated in in-person orientation, training and debriefing sessions; virtual coaching sessions; and via an interactive online hub. Researchers obtained data on participant engagement and satisfaction, and participants' reports of use, helpfulness, intention to use and impact. Participants were engaged in and highly satisfied with the PWLC. They deployed PWLC skills, tools and resources with parents. Evidence of impact was provided at the personal, practice and organizational levels. This study provides preliminary support for the feasibility and impact of the PWLC. Clear specification of a theoretically-based training model for practitioners is an essential step in adapting, implementing and testing interventions in new contexts .

Editorial Perspective: Prato Research Collaborative for change in parent and child mental health - principles and recommendations for working with children and parents living with parental mental illness.

Children whose parents have mental illnesses are among the most vulnerable in our communities. There is however, much that can be done to prevent or mitigate the impact of a parent's illness on children. Notwithstanding the availability of several evidence-based interventions, efforts to support these children have been limited by a lack of adequate support structures. Major service reorientation is required to better meet the needs of these children and their families. This editorial provides recommendations for practice, organisational, and systems change.

Virtual Engagement in a Social Media Community of Mothers With Substance Use Disorders: Content Analysis.

BACKGROUND: Co-occurring substance use disorder is common among pregnant and parenting women with mental illness, but their engagement with and utilization of relevant services and treatment is low. Social media has the potential to convey benefits and facilitate engagement among this target group. OBJECTIVE: This study aimed to explore the reach and engagement of specific social media posts among pregnant women and mothers with substance use disorders. METHODS: Eighteen posts providing content related to substance use (cannabis, opioids, or alcohol), varying in type of content (informational or experiential) and target (policy-, practice-, or perception-related), were posted in a closed Facebook community page comprising over 33,000 pregnant women and mothers between May 2019 and October 2019. RESULTS: The overall level of reach of these Facebook posts ranged from 453 to 3045 community members. Engagement levels, measured via the number of likes, comments, or posts shared, varied based on the type of post content (ie, informational or experiential). CONCLUSIONS: Participation in a virtual community via social media platforms can facilitate engagement among pregnant women and mothers with mental illness by communicating relevant information about substance use, as well as potentially promoting awareness of, access to, and engagement with treatment services.

Barriers and Facilitators to Implementation of Value-Based Care Models in New Medicaid Accountable Care Organizations in Massachusetts: A Study Protocol.

Introduction: Massachusetts established 17 new Medicaid accountable care organizations (ACOs) and 24 affiliated Community Partners (CPs) in 2018 as part of a large-scale healthcare reform effort to improve care value. The new ACOs will receive $1.8 billion dollars in state and federal funding over 5 years through the Delivery System Reform Incentive Program (DSRIP). The multi-faceted study described in this protocol aims to address gaps in knowledge about Medicaid ACOs' impact on healthcare value by identifying barriers and facilitators to implementation and sustainment of the DSRIP-funded programs. Methods and analysis: The study's four components are: (1) Document Review to characterize the ACOs and CPs; (2) Semi-structured Key Informant Interviews (KII) with ACO and CP leadership, state-level Medicaid administrators, and patients; (3) Site visits with selected ACOs and CPs; and (4) Surveys of ACO clinical teams and CP staff. The Consolidated Framework for Implementation Research's (CFIR) serves as the study's conceptual framework; its versatile menu of constructs, arranged across five domains (Intervention Characteristics, Inner Setting, Outer Setting, Characteristics of Individuals, and Processes) guides identification of barriers and facilitators across multiple organizational contexts. For example, KII interview guides focus on understanding how Inner and Outer Setting factors may impact implementation. Document Review analysis includes extraction and synthesis of ACO-specific DSRIP-funded programs (i.e., Intervention Characteristics); KIIs and site visit data will be qualitatively analyzed using thematic analytic techniques; surveys will be analyzed using descriptive statistics (e.g., counts, frequencies, means, and standard deviations). Discussion: Understanding barriers and facilitators to implementing and sustaining Medicaid ACOs with varied organizational structures will provide critical context for understanding the overall impact of the Medicaid ACO experiment in Massachusetts. It will also provide important insights for other states considering the ACO model for their Medicaid programs. Ethics and dissemination: IRB determinations were that the overall study did not constitute human subjects research and that each phase of primary data collection should be submitted for IRB review and approval. Study results will be disseminated through traditional channels such as peer reviewed journals, through publicly available reports on the mass.gov website; and directly to key stakeholders in ACO and CP leadership.

Do disability, parenthood, and gender matter for health disparities?: A US population-based study.

BACKGROUND: Existing research has documented adverse health outcomes among parents with disabilities relative to parents without disabilities, but little is known about whether parenthood adds unique stress and health consequences for people with disabilities. Less is known about whether the effects of parenthood differ between mothers and fathers with disabilities. OBJECTIVES: This paper examined health-related quality of life, obesity, and health behaviors between US parents and nonparents with and without disabilities. We also explored differences in health outcomes separately for men and women by one's parental and disability status. METHODS: An analytic sample of parents and nonparents aged 18-64, with and without disabilities, were derived from the 2016 Behavioral Risk Factor Surveillance System (9,117 parents and 33,961 nonparents with disabilities). Multivariate logistic regression analyses were applied, controlling for individuals' socio-demographic characteristics and their history of chronic conditions. RESULTS: Parents with disabilities, compared to parents without disabilities and nonparents with and without disabilities, were at higher risk of reporting frequent physical distress, obesity, smoking, and insufficient sleep. Among those with disabilities, fathers were more likely than nonfathers to report poor or fair health, frequent physical and mental distress, and obesity; these differences were not evident between mothers and nonmothers with disabilities. CONCLUSIONS: The findings suggest the urgent need for policies and programs to address the health-related needs of parents with disabilities, as well as the need for targeted programs to support fathers with disabilities.

Key Informants Specify Core Elements of Peer Supports for Parents With Serious Mental Illness.

Background: Researchers have documented the lack of evidence-based interventions for parents with serious mental illness (SMI). Given the prevalence of parenthood among individuals with SMI, the value placed on parenthood, and their diverse vulnerabilities, a robust, theoretically sound and empirically tested model of peer supports would likely provide a valuable complement to psychiatric services. In this paper, we lay the groundwork for a model of peer supports using a program theory development process and guided by stages of evidence-informed innovation outlined by the National Implementation Research Network. Methods: This study employed a developmental design in the initial stage of a larger study of the development, implementation, and testing of peer supports to address three questions: (1) What needs of parents with SMI are particularly well-suited to peer supports? (2) What do peers have to offer parents? and (3) What is unique about peer supports for parents? A purposeful sampling strategy was used to recruit key informants (n = 22) familiar with peer supports, family-focused care and the experiences of families living with parental mental illness. Individual interviews were conducted face-to-face or on the telephone and a full-day group interview was conducted using a workshop format. Interview data were analyzed qualitatively to identify themes reflecting potential core program elements. Results: Consistent themes drawn from data comprise four core program elements: engage, explore, plan, and access and advocate. These core activities are likely founded on practice principles that include a focus on families and their strengths, cultural sensitivity, and acknowledgment of the trauma experienced by many parents. The findings raised a number of challenges in contemplating peer supports for parents with SMI, including the need for ongoing support for peers. Discussion: In developing this model, aspects of organizational context must be considered along with specification of the characteristics of parents with SMI suited to this approach and the attributes of peers providing support. A fully-articulated model must include parallel theories of change for the workforce, as well as for participating parents, to support well-being in the context of peer relationships and the success of parents with SMI in family life.