RESUMEN
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.
Asunto(s)
Transición a la Atención de Adultos , Humanos , Adolescente , Niño , Adulto Joven , Cuidadores , Transferencia de Pacientes , Atención a la Salud , PadresRESUMEN
This study investigated the role of social support in self-management within education/employment settings for young adults (YA) with end-stage renal disease (ESRD) as well as barriers and facilitators to social support formation. Nineteen YA with ESRD (mean age 24 years, 10 males, 9 African American) recruited from a pediatric nephrology clinic in the Southeast United States completed in-person semi-structured interviews. The grounded theory was used to analyze transcribed interviews to identify emergent themes. Absences hindered participants' school/work attendance and performance. Social support was necessary for illness management and success in academic/vocational settings. Facilitators to establishing support included self-awareness and view of disclosure as a way to access accommodations. Barriers included fear of judgment, job loss, and the belief that the condition was too personal to disclose. Educators and employers must acknowledge the needs of YA with ESRD to promote development and educational/vocational success. Fear of disclosure and poor disease self-management interferes with accessing social support. Communication skills and autonomy in patients' medical and personal lives can promote success in education and employment settings.
Asunto(s)
Empleo , Fallo Renal Crónico , Adulto , Niño , Humanos , Fallo Renal Crónico/terapia , Masculino , Investigación Cualitativa , Apoyo Social , Sudeste de Estados Unidos , Adulto JovenRESUMEN
BACKGROUND: Alcohol consumption on college and university campuses is a public health concern. Some universities have instituted medical amnesty policies (MAPs) to encourage calling first responders to the scene of an alcohol-related emergency. This study describes perceptions of a university MAP and the perceived risks of calling first responders among a sample of undergraduate students at a mid-sized, private, residential university. Methods: This is an exploratory, peer-led study, in which student-researchers worked under faculty supervision to devise the aims of the study, recruit and conduct qualitative interviews with participants, analyze data, and organize major findings. Results: Participants in this convenience sample (N = 42) were majority female (n = 33, 78.67%) and white (n = 35, 83.3%). White students often reported risking disciplinary consequences (i.e. suspension) if found in violation of university alcohol policy. White students who were familiar with the MAP praised it as beneficial in improving student safety. Students of color (especially Black students) reported concerns for their safety in the presence of first responders (especially police officers). Awareness of the MAP among students of color was very low, and many reported low levels of institutional trust, suggesting the protections conferred by the MAP should be taken "with a grain of salt." Conclusions: MAPs may alleviate concern about some perceived risks of calling first responders, but that benefit may not be experienced equitably among students of color. More research is needed to understand the complex relationship between alcohol policies, alcohol-related injuries, policing, and race on college and university campuses.