The roles of quality of life and family and peer support in feelings about transition to adult care in adolescents with gastroenterology, renal, and rheumatology diseases.

PURPOSE: Transition to adult healthcare is a critical time in the lives of adolescents with chronic medical conditions, with clear impacts on health outcomes. Little is known about factors that impact feelings about healthcare transition, including HRQOL, family and peer support, and utilization of a framework such as the SMART Model can guide exploration of these factors. The goal of this study is to examine how HRQOL (i.e., functional impact of disease) and family and peer support may impact adolescents' feelings about healthcare transition. DESIGN AND METHODS: 135 adolescents (17-23 years) with chronic gastroenterology, renal, or rheumatology disease completed four questionnaires as part of a larger study examining health, relationships, and healthcare transition. Questions assessed current HRQOL (i.e., number of days health was "not good"), peer and family support, and feelings about transition. Data were analyzed using SPSSv25 and linear regressions were performed. RESULTS: Lower HRQOL (ß = 0.283, p < .01) and less peer support (ß = -0.198, p < .05) were associated with worse feelings about transition (R2 = 0.203, p < .001). Family support was significantly correlated at the bivariate level. There were no differences by type of disease, race/ethnicity, or gender that impacted study findings. CONCLUSION(S): Results are concerning as healthcare transition is a milestone for every patient. Lower HRQOL (i.e., greater functional impact of disease) and less peer support were associated with worse feelings about transition. PRACTICE IMPLICATIONS: This study highlights potential targets for intervention such as improving HRQOL (e.g., acceptance and commitment therapy) and increasing peer support (e.g., social skills training, family facilitation) to improve transition to adult care for pediatric patients with chronic diseases.

The Development of Health Self-Management Among Adolescents With Chronic Conditions: An Application of Self-Determination Theory.

PURPOSE: The purpose of the study was to better understand the progressive development of health self-management among adolescents and emerging adults (AEAs) with chronic medical conditions in order to identify opportunities to prepare AEA for transition to adult-based care. METHODS: Twenty-three AEA aged 17-20 years with renal, inflammatory bowel, or rheumatologic diseases, and their parents, completed individual semistructured interviews describing each AEA's health self-management. Self-Determination Theory was used to frame interview questions, including the constructs of competence, autonomy, and autonomy support. Transcripts were analyzed using directed content analysis. RESULTS: Four themes emerged: Development of Competence in Self-Management; Autonomy: Motivations to Self-Manage; Ways Important Others Support or Hinder Independence; and Normal Adolescent Development. AEA's competency and autonomy increased as they progressed from lack of knowledge about self-management to having knowledge without doing tasks, and, ultimately, to independent completion of tasks. Motivations to self-manage included avoiding sickness/weakness and wanting to engage in activities. Parents and providers supported AEA's autonomy through teaching and transferring responsibility. Parental fear/lack of trust in AEA's ability to self-manage hindered development of AEA's autonomy, producing anxiety. Normal adolescent development impacted timing of self-management task mastery. CONCLUSIONS: As AEA gain competence in increasingly complex self-management tasks, they assume greater responsibility for managing their health. Competence and autonomy are facilitated by a feedback loop: AEA successful self-management increased parent trust, enabling the parent to transfer responsibility for more complex tasks. Conversely, parents' fear of the AEA doing wrong hinders transfer of responsibility, limiting competence and autonomy. Health-care providers play an important role in fostering autonomy.

Comparing provider and patient views of issues for low-resourced breast cancer patients.

OBJECTIVE: The purpose of this study was to compare provider and patient views from the same clinical settings on issues raised by low-socioeconomic status (SES) breast cancer survivors. METHODS: We conducted qualitative interviews among two groups: low-SES breast cancer survivors (n = 37) and medical personnel (ie, physicians, nurses, and navigators; n = 8) who interact and serve with these patients from two geographically distinct low-resourced clinical settings. These semistructured qualitative interviews used grounded theory to identify several potential themes, such as finances, resources, and medical care. Transcripts were coded and summarized into themes. RESULTS: We analyzed each type of interview data separately then compared patient and provider perspectives. From these qualitative interviews, we discovered that low-SES breast cancer survivors reported many unmet needs, including transportation, housing, health literacy, and language, among others. Providers reported that many of these needs are served by the extensive network of supports surrounding these patients. CONCLUSIONS: These results illustrate that low-SES breast cancer survivors have unique needs that differ from other breast cancer survivors. Many providers feel that these needs are being met, but patients have more diverse experiences. By better addressing the links between resource needs and low-SES breast cancer survivors, quality of life can be improved.