Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

BACKGROUND: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15-17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. MAIN BODY: This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a "critical turning point," that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. CONCLUSIONS: We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.

The YGetIt? Program: A Mobile Application, PEEP, and Digital Comic Intervention to Improve HIV Care Outcomes for Young Adults.

INTRODUCTION: In New York State (NYS), young adults account for the largest number of new human immunodeficiency virus (HIV) infections and struggle to seek and remain in HIV care. Digital interventions and access to peer support have demonstrated positive influences on the HIV care continuum and health outcomes. The New York State Department of Health (NYS DOH) developed YGetIt? (YGI) that combines a mobile application, GET!, peer navigation (PEEPs), and a compelling digital comic series, "Tested," to facilitate the timely entry of young people into HIV care, to prevent vulnerable youth from dropping out of care, and to achieve sustained viral load suppression among those in care. This article describes the development and early implementation of the YGI digital intervention. Intervention Design. GET! provided a high level of confidentiality and security, ease of access, and Wi-Fi accessibility. YGI enrolled 113 HIV-positive participants from a clinical setting who were individually randomized at a 1:1 ratio to receive access to GET! plus PEEPs (n = 53) or the app alone (n = 60). LESSONS LEARNED: For recruitment, staff and organization buy-in was essential to the success of the intervention, and building relationships was critical. GET! development was an iterative process. Peer Engagement Educator Professionals (PEEPs) who were tech savvy, representative of the priority population, and had shared life experience with participants were most impactful. Interest in apps declines over time and participants in the APP alone arm were less engaged. CONCLUSION: GET! is a communication and engagement tool that supports HIV care and may serve as a model for like digital interventions.

Feelings of Parental Authenticity Moderate Concurrent Links Between Breastfeeding Experience and Symptoms of Postpartum Depression.

A negative breastfeeding experience is a contextual risk factor for the development of postpartum depressive symptoms among mothers. Many current interventions targeted at disrupting this association rely on the ability to make breastfeeding experiences positive. As a beginning step toward identifying alternative approaches, we investigated a potential psychological buffer of the negative relation between breastfeeding experience and symptoms of postpartum depression: feeling authentic in one's role as a parent. Authenticity appears to enhance well-being and buffer negative outcomes more generally, but has largely gone unaddressed in mothers, particularly during the critical peripartum period when depressive symptoms are at increased prevalence. We tested whether three facets of felt authenticity in the parent role (authentic living, acceptance of external influence, and self-alienation) moderated the association between satisfaction with breastfeeding experience and postpartum depressive symptoms in mothers (N = 92, 81% White, 85% Non-Hispanic, college-educated, M age = 30.49). We found that mothers who felt high in authentic living in the parent role showed fewer depressive symptoms when breastfeeding experiences were positive. In addition, we found that the association between negative breastfeeding experience and greater postpartum depression was mitigated when feelings of self-alienation in the parent role, or the sense that one is unaware of or disconnected from who "she really is" as a mother, were low. This work suggests that enhancing women's feelings of connectedness to "who they truly are" as a mother may be protective against some of the negative mental health effects linked to problems with breastfeeding.

Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis.

Background: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supports. There are a range of resources in Canada to support siblings of individuals with a CHC, but these resources are not synthesized and the extent to which they relate to healthcare management remains unclear. Purpose: The purpose of this document review was to identify, describe, and synthesize the types of resources currently available to provide general information and healthcare management information about how siblings can provide support to individuals with CHCs in Canada. Methods: Print and electronic resources were systematically identified and retrieved from the websites of organizations, treatment centers, and children's hospitals that are part of Children's Healthcare Canada. Each unique resource was treated as a text document. Documents that met the following inclusion criteria were included: addressed the topic of siblings of individuals with a CHC and written in English. Data were extracted from included documents and qualitative conventional content analysis was conducted. Throughout the process of this review, we partnered with a Sibling Youth Advisory Council. Results: The systematic search yielded 1,628 non-duplicate documents, of which 163 documents met the inclusion criteria. Of the total of 163 documents, they were delivered in the following formats: 17 (10%) general informational products (e.g., booklets, videos) about a CHC and sibling relationships, 39 about support programs and workshops (24%), 34 news articles (21%) that described the roles of siblings, and 6 (3%) healthcare management informational products (e.g., toolkit, tipsheets), 31 blogs (19%) and 39 interviews (24%) with parents and siblings. In the blogs and interviews, siblings and parents described how siblings developed knowledge and skills for healthcare management, as well as their role and identity over time. Significance: This study identified that there are limited resources available about healthcare management for siblings of CHC in Canada. Resources are needed to facilitate conversations in the family about the role of siblings with healthcare management of their sibling with a CHC.

Screening for Mothers at Risk to Wean Early and Referral to a Lactation Support Person for Prolonging Breastfeeding.

This project trialed the breastfeeding control (BFC) scale of the Breastfeeding Attrition Prediction Tool (BAPT) to identify mothers at high risk to wean early and to determine the effectiveness of a prenatal consult with a lactation support person on breastfeeding duration and intensity. Results indicated that mothers with lower scores on the BAPT-BFC scale showed a trend for decreased breastfeeding intensity at 8 weeks postpartum. Experimental and control groups had similar BAPT-BFC scores and breastfeeding intensity at 8 weeks. Overall, women who had low BAPT-BFC scores tended to be breastfeeding less at 8 weeks compared with mothers who scored very high. This finding would suggest the BAPT-BFC is a helpful tool for predicting breastfeeding success.