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1.
J Adv Nurs ; 80(8): 3278-3297, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38212971

RESUMEN

AIM: To identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice. DESIGN: A real-time, qualitative process evaluation. METHODS: Individual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology. Data were analysed through the lens of normalization process theory. RESULTS: Themes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families. CONCLUSION: We identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top-down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation strategies should be developed before implementing a transfer program in clinical practice. IMPACT: Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators. Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them. The results of this qualitative study could support the implementation of transfer programs in other settings. REPORTING METHOD: Consolidated criteria for reporting qualitative studies (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation. Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program. Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation.


Asunto(s)
Actitud del Personal de Salud , Padres , Humanos , Enfermedad Crónica , Padres/psicología , Adolescente , Masculino , Femenino , Adulto , Persona de Mediana Edad , Investigación Cualitativa , Médicos/psicología
2.
J Adolesc Health ; 73(4): 707-714, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37389522

RESUMEN

PURPOSE: We aimed to examine whether wellbeing, health behavior, and youth life among young people (YP) with co-occurrence of physical-mental conditions, that is, multimorbidity differ from YP with exclusively physical or mental conditions. METHODS: The population included 3,671 YP reported as having a physical or/and mental condition from a Danish nationwide school-based survey (aged 14-26 years). Wellbeing was measured by the five-item World Health Organization Well-Being Index and life satisfaction by the Cantril Ladder. YP's health behavior and youth life were evaluated in seven domains: home, education, activities/friends, drugs, sleep, sexuality, and self-harm/suicidal thoughts, in accordance with the Home, Education and employment, Eating, Activities, Drugs, Sexuality, Suicide and depression, and Safety acronym. We performed descriptive statistics and multilevel logistic regression analysis. RESULTS: A total of 52% of YP with physical-mental multimorbidity reported a low level of wellbeing, compared to 27% of YP with physical conditions and 44% with mental conditions. YP with multimorbidity had significantly higher odds of reporting poor life satisfaction, compared to YP with exclusively physical or mental conditions. YP with multimorbidity had significantly higher odds for psychosocial challenges and health risk behavior, compared to YP with physical conditions, along with increased odds for loneliness (23.3%), self-harm (63.1%), and suicidal thoughts (54.2%), compared to YP with mental conditions. DISCUSSION: YP with physical-mental multimorbidity had higher odds for challenges and low wellbeing and life satisfaction. This is an especially vulnerable group and systematic screening for multimorbidity and psychosocial wellbeing is needed in all healthcare settings.


Asunto(s)
Multimorbilidad , Ideación Suicida , Adolescente , Humanos , Soledad , Escolaridad , Investigación , Enfermedad Crónica
3.
Trials ; 23(1): 1034, 2022 Dec 20.
Artículo en Inglés | MEDLINE | ID: mdl-36539857

RESUMEN

BACKGROUND: Previous research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program's effectiveness, acceptability, and costs. METHODS: The overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5-17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents' acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis. DISCUSSION: To our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child's transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04969328 . Retrospectively registered on 20 July 2021.


Asunto(s)
Pediatría , Transición a la Atención de Adultos , Humanos , Niño , Adolescente , Adulto , Padres , Enfermedad Crónica , Personal de Salud , Ensayos Clínicos Controlados Aleatorios como Asunto
4.
BMC Health Serv Res ; 22(1): 485, 2022 Apr 12.
Artículo en Inglés | MEDLINE | ID: mdl-35413976

RESUMEN

BACKGROUND: Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness. METHODS: The study was based on the UK Medical Research Council's (MRC) framework on developing and testing complex interventions. To increase the program's feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. RESULTS: Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition - a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. CONCLUSIONS: The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents' and adolescents' needs were represented and addressed in the program. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04969328.


Asunto(s)
Pediatría , Transición a la Atención de Adultos , Adolescente , Adulto , Ansiedad , Niño , Enfermedad Crónica , Humanos , Padres
5.
Int J Adolesc Med Health ; 34(6): 487-498, 2022 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-32877363

RESUMEN

OBJECTIVES: Significant variation in cultural and socio-economic factors across different countries means that modification of existing guidelines for youth-friendly health services are needed. Furthermore, including the views and perspectives of young people in developing health services add significant value. The aim of this study was to develop a national guideline for youth-friendly health services using the Delphi method. METHODS: We invited young people with chronic conditions, managers of paediatric, psychiatric and relevant adult departments and health care professionals with experience and interest in adolescent medicine to participate. The initial list of elements was constructed based on international guidelines and systematic reviews. The study consisted of three electronic questionnaire rounds assessing relevance, importance and whether the elements were essential/very important, respectively. We used 70% agreement as cut-off. RESULTS: More than 70% of participants agreed that only one element was essential: 'Young people should be actively involved in decisions about their treatment and encouraged and supported to ask questions about their illness and treatment'. Additionally, 18 elements reached more than 70% agreement, when the 'essential' was combined with the 'very important' category. We grouped these 19 elements into five themes: 1) staff competences and workflow, 2) developmentally appropriate communication, 3) focus on youth life, including mental health 4) youth participation and shared decisions, and 5) autonomy and transitional care. CONCLUSION: This guideline for a youth-friendly health care system may serve as inspiration for concrete changes, both locally and internationally, as it was developed together by young people, staff, and management.

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