Parent-to-parent peer support for children and youth with special health care needs: Preliminary evaluation of a family partner program in a healthcare system.

PURPOSE: Children and youth with special health care needs (CYSHCN) have complex care and coordination needs that are often managed by parents or primary caregivers. This study describes a parent-to-parent peer support pilot program for parents of CYSHCN implemented in both outpatient and inpatient settings across a large health system. DESIGN & METHODS: Retrospective data from the Family Partner Program documentation in patient health records are described. Descriptions about the encounters and types of support provided are also reviewed using qualitative descriptive analysis. RESULTS: Three Family Partners conducted 203 encounters with parents of 90 CYSHCN over six months. Family Partners provided both emotional and tangible support. Primary themes discussed included the persistent care, coordination and management needs related to parenting a child with complex care needs, the subsequent worry and stress about their child and family, and the need for stress management and self-care. CONCLUSION: This study provides early evidence that implementation of a parent-to-parent peer support program for parents of CYSHCN in a large, academic medical center is feasible. Family Partners enhanced their healthcare team's ability to provide patient- and family-centered support for pediatric patients and their families through the provision of emotional and tangible support. PRACTICE IMPLICATIONS: Family Partners, who are trained in effective use of the shared experience, the health coach model, and healthcare systems, and who are supported by a strong supervisory team, are ideally suited to support families and patients as they address their concerns and unmet needs and navigate complex health circumstances.

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents.

PURPOSE: This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33 years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. DESIGN AND METHODS: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. RESULTS: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. CONCLUSIONS: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for non-categorical HCT-focused approach. PRACTICE IMPLICATIONS: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.

Effects of a Rural Family Drug Treatment Court Collaborative on Child Welfare Outcomes: Comparison Using Propensity Score Analysis.

Previous studies that have examined the impact of family drug treatment courts (FDTCs) on child welfare outcomes have produced mixed results. This study evaluates the impact of a rural, FDTC collaborative on child welfare outcomes using propensity score analysis. Findings from the study show that children in the treatment group had longer stays in child welfare custody but were substantially less likely to experience future incidents of maltreatment than those in families with parental substance use disorders without these services.

MyKidneyCoach, Patient Activation, and Clinical Outcomes in Diverse Kidney Transplant Recipients: A Randomized Control Pilot Trial.

Kidney transplant (KT) recipients who are not actively engaged in their care and lack self-management skills have poor transplant outcomes, which are disproportionately observed among Black KT recipients. This pilot study aimed to determine whether the MyKidneyCoach app, an mHealth intervention that provides self-management monitoring and coaching, improved patient activation, engagement, and nutritional behaviors in a diverse KT population. Methods: This was a randomized, age-stratified, parallel-group, attention-control, pilot study in post-KT patients. Participants were randomized into the attention-control with access to MyKidneyCoach for education and self-management (n = 9) or the intervention with additional tailored nurse coaching (n = 7). Feasibility, acceptability, and clinical outcomes were assessed. Results: The acceptability of MyKidneyCoach by System Usability Scale was 67.5 (95% confidence interval [CI], 59.1-75.9). Completion rates based on actively using MyKidneyCoach were 81% (95% CI, 57%-93%) and study retention rate of 73%. Patient activation measure significantly increased overall by a mean of 11 points (95% CI, 3.2-18.8). Additionally, Black patients (n = 7) had higher nutrition self-efficacy scores of 80.5 (95% CI, 74.4-86.7) compared with 75.6 (95% CI, 71.1-80.1) in non-Black patients (n = 9) but lower patient activation measure scores of 69.3 (95% CI, 56.3-82.3) compared with 71.8 (95% CI, 62.5-81) in non-Black patients after 3 mo. Conclusions: MyKidneyCoach was easy to use and readily accepted with low attrition, and improvements were demonstrated in patient-reported outcomes. Both Black and non-Black participants using MyKidneyCoach showed improvement in self-management competencies; thus, this intervention may help reduce healthcare inequities in KT.

Review and Evaluation of mHealth Apps in Solid Organ Transplantation: Past, Present, and Future.

With the rapid and widespread expansion of smartphone availability and usage, mobile health (mHealth) has become a viable multipurpose treatment medium for the US healthcare system. Methods: The purpose of this review is to identify posttransplant mHealth applications that support patient self-management or a patient-provider relationship and aim to improve clinical outcomes. The interventions were then analyzed and evaluated to identify current gaps and future needs of mHealth apps in solid organ transplantation. Results: The authors found a nearly universal dichotomy between perceived utility and sustained use, with most studies demonstrating significant attrition during the course of the intervention. In addition, interoperability continues to be a challenge. Conclusions: The authors present potential methods for mitigating the identified barriers and gaps in mHealth apps for solid organ transplant recipients.

Clinical Application of a Peer Coaching Intervention to Enhance Self-Management for Adolescents and Young Adults With Inflammatory Bowel Disease.

Objective: The purpose of this article is to characterize the current evidence base related to peer support interventions for adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) and to describe a peer support program to enhance self-management for AYAs with IBD through a case study. There is strong theory and compelling evidence suggesting that AYAs with IBD could benefit from and are interested in receiving peer support to enhance self-management; however, literature on peer support interventions for AYAs with IBD is lacking. Methods: This study (a) presents a topical review describing qualitative factors AYAs with IBD would seek in a peer support program as well as existing peer support programs for this population, (b) presents an innovative one-to-one peer support program targeting self-management through a case study, and (c) discusses clinical implications and directions for future research. Results: Peer support offers a promising approach for AYAs with IBD that is feasible and acceptable to patient populations. However, results from the present topical review identified only two studies that examined peer support interventions for AYAs with IBD. The case study demonstrates how a theoretically driven program uses peer support to promote self-management and adaptive behavioral change. Conclusions: The paucity of literature in this area reveals a critical opportunity for future research and clinical programming to improve existing practices by leveraging peer support. We present the application of an innovative mobile-based peer coaching intervention that has the potential to support AYAs with IBD in their self-management.

Lost in transition: resident and fellow training and experience caring for young adults with chronic conditions in a large United States' academic medical center.

BACKGROUND: The transition from pediatric to adult healthcare is a vulnerable time for adolescents and young adults (AYA), especially those with chronic conditions. Successful transition requires communication and coordination amongst providers, patients, and families. Unfortunately, multiple studies have demonstrated that the majority of practicing providers do not feel prepared to help AYA patients through health care transition, but little is known about the transition/transfer aptitudes of physician trainees. OBJECTIVES: The purpose of this study was to establish the transition/transfer training that residents and fellows from different fields receive - and determine what training factors are associated with increased confidence in core transition/transfer skills. DESIGN: A 20-item electronic survey regarding experiences caring for AYA patients was sent to all 2014-2015 graduate medical education (GME) trainees at our institution. RESULTS: Forty-nine percent (479/985) of trainees responded: 60 pediatric, 387 non-pediatric, and 32 'combined' (e.g., Medicine/Pediatrics or Family Medicine). Trainees from all three categories of programs reported similar exposure to AYA patients with chronic conditions, with a median of 1-3 encounters per month. A quarter of trainees rated themselves as 'not at all prepared' to speak with a counterpart provider about a transferring patient, while nearly half of trainees considered themselves 'not at all prepared' to speak with a patient and family about transition. Trainee confidence in performing these two skills was strongly predicted by three factors: increased exposure to AYA with chronic conditions, education (training or role modeling) in transition skills, and experience practicing transition skills. Of these, the strongest association with trainee confidence was experience practicing the skills of communicating with other providers (OR = 13.0) or with patients/families (OR = 14.5). CONCLUSION: Despite at least monthly encounters with AYA with chronic conditions, most residents and fellows have very little experience communicating across the pediatric-to-adult healthcare divide, highlighting training opportunities in graduate medical education.

Research With Children Exposed to Partner Violence: Perspectives of Service-Mandated, CPS- and Court-Involved Survivors on Research With Their Children.

Rapidly growing numbers of female survivors of intimate partner violence (IPV) who are the primary caregivers for their children are being mandated to services by child protective services (CPS) and/or the court system. Research is needed to better understand the experiences of these children; however, such research is hindered by the dearth of empirical evidence to guide researchers in how best to recruit and collect data about and from IPV-exposed children whose families are mandated to services. From a qualitative study with 21 CPS- and/or court-involved mothers, this article reports findings about participants' perspectives regarding research with their IPV-exposed children. Our analyses determined three key findings: (a) mothers' reasons or motivations for allowing their children to participate in research, (b) mothers' reasons for refusing consent for their children to participate, and (c) strategies for increasing research participation among this population. Based on these findings, we offer recommendations for enhancing research participation among IPV-exposed children from CPS- and/or court-involved families mandated to services, including specific recruitment and data collection strategies. These recommendations and strategies also hold value for research with other vulnerable families and children struggling with violence.

Comparison of Positive Youth Development for Youth With Chronic Conditions With Healthy Peers.

PURPOSE: Adolescents with childhood-onset chronic condition (COCC) are at increased risk for physical and psychological problems. Despite being at greater risk and having to deal with traumatic experiences and uncertainty, most adolescents with COCC do well across many domains. The Positive Youth Development (PYD) perspective provides a framework for examining thriving in youth and has been useful in understanding positive outcomes for general populations of youth as well as at-risk youth. This study aimed to compare levels of PYD assets between youth with COCC and youth without illness. METHODS: Participants with COCC were recruited from specialty pediatric clinics while healthy participants were recruited from a large pediatric primary care practice. Inclusion criteria for participants included being (1) English speaking, (2) no documented intellectual disability in electronic medical record, and (3) aged between 13 and 18 years during the recruitment period. Univariate and bivariate analyses on key variables were conducted for adolescents with and without COCC. Finally, we performed multivariable linear regressions for PYD and its subdomains. RESULTS: There were no significant differences between overall PYD or any of the subdomains between the two groups. Multivariable linear regression models showed no statistically significant relationship between chronic condition status and PYD or the subdomains. CONCLUSIONS: The findings from this study support the application of the PYD perspective to this population of youth. The results of this study suggest that approaches shown to benefit healthy youth, could be used to promote positive outcomes for youth with COCC.