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.

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.

Brief Report: Adolescents' Reasons for Participating in a Health Care Transition Intervention Study.

PURPOSE: This study investigated the reasons adolescents with spina bifida consented or assented to participate in a randomized controlled prospective health care transition intervention study. METHODS: Sixty-five adolescents with spina bifida (SB), ages 14 to 18 years, who had previously participated in the Transition Preparation Training Program (TPT) study were recruited for the current study. A total of 26 consents/assents were obtained; a total of 25 questionnaires were returned (11 treatment; 14 control). Study findings were from a sample of 25 adolescents, aged 14 to 20 years who had participated in a randomized controlled prospective study entitled the Transition Preparation Training Program (TPT). Content analysis was used to code and analyze data. RESULTS: Study findings revealed adolescents indicated several reasons for choosing to participate in the research study. Major reasons cited for their participation were related to the desire to learn more about their condition and for altruistic purposes. Numerous reasons were offered by respondents as to why adolescents declined to participate in the research study; feelings of discomfort and issues of privacy were cited. Sixty-four percent of the respondents indicated the offer of a research incentive did not affect their decision to participate in the TPT study. Other findings are reported as to the use of research incentives and future recruitment recommendations. CONCLUSIONS: Youth shared a number of reasons and insights about recruitment strategies that may be helpful for future research efforts, especially those studies involving adolescents with special health care needs who participate in health care transition research.

Uncharted Territory: Systematic Review of Providers' Roles, Understanding, and Views Pertaining to Health Care Transition.

BACKGROUND: Health care transition (HCT) for adolescents and emerging adults (AEA) with special health care needs is an emerging field of interdisciplinary field of practice and research that is based upon an intergenerational approach involving care coordination between pediatric and adult systems of health care. Informed understanding of the state of the HCT science pertaining to this group of providers is needed in order to develop and implement service programs that will meet the comprehensive needs of AEA with special health care needs. METHODS: The authors conducted a systematic review of the literature on the transition from child to adult care for adolescents and emerging adults (AEA) with special health care needs from 2004 to 2013. Fifty-five articles were selected for this review. An adaptation of the PRISMA guidelines was applied because all studies in this review used descriptive designs. RESULTS: Findings revealed lack of evidence due to the limitations of the research designs and methodology of the studies included in this systematic review. Study findings were categorized the following four types: adult provider competency, provider perspectives, provider attitudes, and HCT service models. The discipline of medicine was predominant; interdisciplinary frameworks based upon integrated care were not reported. Few studies included samples of adult providers. CONCLUSIONS: Empirical-based data are lacking pertaining to the role of providers involved in this specialty area of practice. Evidence is hampered by the limitations of the lack of rigorous research designs and methodology.