Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study.

BACKGROUND: Previous literature has explored parent/caregiver perspectives and satisfaction with the health care transition (HCT) process for their adolescents and young adults with special health care needs (AYASHCN). Limited research has explored the opinion of health care providers and researchers on parent/caregiver outcomes associated with a successful HCT for AYASHCN. METHODS: A web-based survey was distributed through the international and interdisciplinary Health Care Transition Research Consortium listserv, which at the time of the survey was composed of 148 providers dedicated to optimizing the HCT of AYAHSCN. Participants responded to the open-ended question, 'What parent/caregiver-related outcome(s) would represent a successful healthcare transition?' Respondents included 109 providers (52 health care professionals, 38 social service professionals and 19 other). Responses were coded for emergent themes, and research suggestions were identified. RESULTS: Qualitative analyses identified two major themes: emotion- and behaviour-based outcomes. Emotion-based subthemes included relinquishing control of child's health management (n = 50, 45.9%) as well as parental satisfaction and confidence in their child's care and HCT (n = 42, 38.5%). Respondents also noted that parents/caregivers should experience an improved sense of well-being and decreased stress (n = 9, 8.2%) due to a successful HCT. Behaviour-based outcomes included early preparation and planning for HCT (n = 12, 11.0%) and parental instruction on the knowledge and skills necessary for their adolescent to independently manage their health (n = 10, 9.1%). CONCLUSIONS: Health care providers can assist parents/caregivers in learning strategies for instructing their AYASHCN about condition-related knowledge and skills as well as provide support for 'letting go' of the caregiver role during the HCT to adult-focused health services and adulthood. Communication between the AYASCH, their parents/caregivers and paediatric- and adult-focused providers needs to be consistent and comprehensive to ensure continuity of care and a successful HCT. We also offered strategies to address the outcomes suggested by the participants of this study.

Measuring health care transition: Across time and into the future.

PROBLEM: Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources and Service Administration, Maternal and Child Health Bureau have measured HCT service provision since 2001 but the longitudinal use of this measure has never been examined (Blumberg, 2003; Maternal and Child Health Bureau, n.d.). ELIGIBILITY CRITERIA: This manuscript highlights the consistent and inconsistent uses of HCT constructs in two prominent national surveys (the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Children's Health (NSCH)) between 2001 and 2019. All studies utilizing an HCT measure within a national survey between the 18 years were included in this examination. RESULTS: Significant changes have been made to the measurement of HCT service provision resulting in inconsistencies over the last 18 years. Measurement criteria and survey questions have changed substantially from the NS-CSHCN and NSCH limiting one's ability to examine trends in HCT since 2001. Since 2016, few changes have been made, allowing for analysis of trends over time. Importantly, the NSCH includes added questions pertaining to HCT that are not included in the composite HCT outcome measure. CONCLUSION: Future work should include a validation study of the HCT outcome in the National Survey of Children's Health and inclusion of additional HCT questions to promote continued and extensive use of a measure that more fully represents the needs of youth and their families.

Psychometric Testing of Family Centered Care (FCC) Instrument: A Mixed Methods Analysis of Pediatric Nurses and Their Workplace Perceptions of FCC.

BACKGROUND/PURPOSE: Family-Centered care (FCC) is a model used in pediatric healthcare delivery wherein planning care for children incorporates the family, but questions remain whether there has been effective FCC implementation in practice. The purpose of this study was to examine the importance of FCC to pediatric nurses and their view of their organizations' support of FCC implementation. METHOD: A survey with FCC descriptor statements was distributed electronically to the Society of Pediatric Nurses. Direct care nurses (N = 132) responded to demographic questions including their education level and organization size, and 26 items rating the importance of elements of FCC in their care (as it applies to themselves) and in their organizations (as it applies to their hospital or organization) using a 5-point Likert scale. Open ended questions supplemented the survey to yield narrative comments to triangulate the findings. RESULTS: The nurses' personal responses and their rating of their organizations were analyzed separately. The Cronbach alphas were 0.867 and 0.938, respectively. Factor analyses revealed the same three factors in the two foci of questions for (a) the nurse's own practice and (b) the organization's support of FCC: Philosophy of FCC, Implementation of FCC and Environment Variations of FCC. A qualitative process of narrative analysis added support to the factors with clarity in thematic triangulation. Additionally, there was a significant difference in the mean scores between nurses' personal responses and the mean scores for their organizations for all three factors (p = .000) and for self-reported FCC by nursing education to validate the utility of the tool. CONCLUSIONS: This instrument quantified the importance of FCC to pediatric nurses and their workplace support of FCC and can be used in future studies to evaluate FCC.

Pediatric Nurses' Role in Health Care Transition Planning: National Survey Findings and Practice Implications.

PURPOSE: Youth and young adults (YYA) with chronic illness and/or disability (CID) face numerous challenges in transition from pediatric to adult health care. Established evidence supports interdisciplinary team approaches to preparing youth and families for transition and transfer. The purpose of this national survey was to address a gap in current knowledge specific to pediatric nursing professionals' roles and responsibilities in health care transition planning (HCTP). METHODOLOGY: A quantitative descriptive study using a survey questionnaire validated by experts in the field investigated respondents' role in HCTP, inclusion of HCTP in job description, levels of HCTP knowledge, and ratings of importance of HCTP elements. A volunteer sample of 1814 respondents was drawn from two professional organizations. RESULTS: Over 64% of respondents performed HCTP activities related to complex chronic illness management. Only 18% reported specialized training in HCTP. The highest-ranking items in regard to perceived importance were educating and supporting disease self-management and speaking with families about complex needs. Predictors of perceived importance were role, inclusion of transition planning in a job description, percentage of time in direct care, caring for those aged 14 years and older, and level of knowledge about HCTP. CONCLUSIONS: The findings highlight key aspects of the pediatric nurse role in HCTP and identify specific elements that can be addressed to support future HCTP role development. PRACTICE IMPLICATIONS: Pediatric nurses perform a vital role in HCTP for YYA with CID that may be enhanced with the inclusion of HCTP activities in job descriptions and specialized interdisciplinary HCTP training related to this emerging and growing population.

The Development and Content Validation of a Self-reported Instrument to Explore the Nurse's Role in Healthcare Transition Planning for Youth and Young Adults With Chronic Illness and/or Disability (NR-HCTP).

PURPOSE: To develop an instrument to assess the nurse's role and responsibilities in healthcare transition planning (HCTP) for youth and young adults (YYA) with chronic illness and/or disability (CI/D) that will determine to what extent nurses are involved with providing HCTP services; and identify the specific activities that nurses engage in when providing HCTP services. DESIGN AND METHODS: A panel of seven experts in the field were used to determine content validity. RESULTS: The final NR-HCTP instrument contains a total of 68 items (17 main items, 5 containing sub items) representing activities that nurses engage in when providing HCTP services, their level and extent of involvement, and their level of knowledge in the areas of HCTP. PRACTICE IMPLICATIONS: An exploration of nurse's roles in HCTP for YYA with CI/D allows for discussion of current nursing practices in the transition process. The information obtained may be used to identify gaps in knowledge and practice guidelines, develop nursing core elements and educational materials to support nurses in their role, and inform nursing administrators in the development of appropriate HCTP position descriptions.

Self-management and Transition to Adult Health Care in Adolescents and Young Adults: A Team Process.

As health care continues to evolve, the need for more effective health care transition (HCT) for all youth, but particularly children with chronic conditions and special health care needs, becomes even more important. With more than 90% of adolescents with chronic medical conditions now surviving into adulthood, suboptimal transition can lead to poorer quality of life and less successful adulthood.Through a series of clinical vignettes, the challenges of HCT are presented herein and accompanied by comments that underscore how these adolescents can best be helped to transition to successful adulthood. Several methods are presented to assess the readiness of adolescents and young adults (AYA) for transition. The process of transition can be divided into 3 stages: 1) setting the stage: initiation of HCT services and transition readiness assessment, 2) moving forward: ongoing provision of HCT services, and 3) reaching the goal: transfer of care and transition to adulthood.Several valuable suggestions for incorporating the HCT process into the health care system and improving HCT programs through a quality improvement (QI) approach are outlined. Future challenges in HCT include developing more precise assessments of transition status or transition readiness, better understanding the status and specific needs of AYA with chronic health care needs, continued program evaluation and QI efforts, and more reliance on patients and families to teach us about the challenges and methods in HCT that most effectively work for them.

Systematic review: Health care transition practice service models.

BACKGROUND: Nearly 750,000 adolescents and emerging adults with special health care needs (AEA-SHCN) enter into adulthood annually. The linkages to ensure the seamless transfer of care from pediatric to adult care and transition to adulthood for AEA-SHCN have yet to be realized. PURPOSE: The purpose of this systematic review was to investigate the state of the science of health care transition (HCT) service models as described in quantitative investigations. METHODS: A four-tier screening approach was used to obtain reviewed articles published from 2004 to 2013. A total of 17 articles were included in this review. DISCUSSION: Transfer of care was the most prominent intervention feature. Overall, using the Effective Public Health Practice Project criteria, the studies were rated as weak. Limitations included lack of control groups, rigorous designs and methodology, and incomplete intervention descriptions. CONCLUSION: As the findings indicate, HCT is an emerging field of practice that is largely in the exploratory stage of model development.