المؤلفون: de Hosson, Michèle, De Groote, Katya, Van Hecke, Ann, De Wolf, Daniël, Vandekerckhove, Kristof, Muiño Mosquera, Laura, Panzer, Joseph, Logghe, Karen, Mels, Saskia, Demulier, Laurent, Campens, Laurence, Goossens, Eva, De Backer, Julie

المصدر: PATIENT EDUCATION AND COUNSELING ; ISSN: 0738-3991 ; ISSN: 1873-5134

مصطلحات موضوعية: Medicine and Health Sciences, General Medicine, Transition to adult care Chronic Disease, Transition Program, Transitional Care, Congenital, Heart defects

الوصف: Objective To evaluate the effectiveness of the transition program for adolescents with congenital heart disease (CHD) ‘Transition With a Heart’ (TWAH) on disease-related knowledge, quality of life (QoL), transition experiences, and gaps in follow-up. Methods A study with pre-posttest and control group (post-test) using consecutive sampling, including adolescents with moderate to severely complex CHD, without intellectual disability, aged≥ 12 y, and parents. After weighting, t-tests were performed. A multivariable regression analysis explored the outcomes’ determinants. Results In the intervention group, 28 adolescents and 25 parents were included, and 53 adolescents and 18 parents as controls. Adolescents’ knowledge significantly increased after completing TWAH (from 59.8% to 75.7%;p < 0.01). Their knowledge was positively correlated with TWAH (β = +13.3;p < 0.01). Adolescents’ transition experiences were also positively related to TWAH (general experience: β = +5.5;p < 0.01; transfer satisfaction: β = +0.8; p < 0.01). Adolescents’ QoL was mainly determined by CHD complexity and not by TWAH. No one showed gaps in follow-up. TWAH was not associated with parents’ transition experiences. Conclusion Implementing TWAH substantially improved adolescents’ disease-related knowledge and transition experiences. Practice implications The results regarding transition experiences need to be confirmed by further research. The TWAH design with the person-tailored educational program, skills training, and the transition coordinator can be used in settings with other chronic diseases.

وصف الملف: application/pdf

العلاقة: https://biblio.ugent.be/publication/01HDDHZHF6JZVZJ3TNPQKA6XZ5Test; http://hdl.handle.net/1854/LU-01HDDHZHF6JZVZJ3TNPQKA6XZ5Test; http://doi.org/10.1016/j.pec.2023.108028Test; https://biblio.ugent.be/publication/01HDDHZHF6JZVZJ3TNPQKA6XZ5/file/01HDDJ22BZ7Y001F29B09NY947Test

الإتاحة: https://doi.org/10.1016/j.pec.2023.108028Test
https://biblio.ugent.be/publication/01HDDHZHF6JZVZJ3TNPQKA6XZ5Test
http://hdl.handle.net/1854/LU-01HDDHZHF6JZVZJ3TNPQKA6XZ5Test
https://biblio.ugent.be/publication/01HDDHZHF6JZVZJ3TNPQKA6XZ5/file/01HDDJ22BZ7Y001F29B09NY947Test

المؤلفون: Barbosa, Samira Goldberg Rego, Gavioli, Aroldo, Cicchetto, Julia Rosa Matias, Sanches, Rafaely de Cassia Nogueira, Radovanovic, Cremilde Aparecida Trindade

المصدر: Aquichan, ISSN 1657-5997, Vol. 24, Nº. 1, 2024

مصطلحات موضوعية: Lista de verificación, enfermería, atención domiciliaria de salud, transición a la atención de adultos, estudio de validación, Lista de checagem, enfermagem, cuidados domiciliares, transição do cuidado, transição para assistência do adulto, estudo de validação, Checklist, nursing, home nursing, transition to adult care, validation study

الوصف: Introduction: The use of pre-discharge tools enables the nursing team to guide informal caregivers, promoting continued care at home, which can minimize readmissions. Objective: To develop and validate a checklist to support the nursing team in guiding informal caregivers regarding home care during the discharge transition process. Materials and Methods: This is a methodological study, submitted to 14 nurse judges, who evaluated a checklist on care guidelines for informal caregivers in the hospital discharge transition. The study was performed in three stages: A literature review, the development of the checklist, and validation using the Delphi technique, which was conducted from February 2022 to January 2023, and the data was treated using scale reliability analysis, a content validity index, and an intraclass correlation coefficient. Results: The checklist was comprised of 10 domains: Hygiene and comfort; tracheostomy; oxygen therapy; nutrition; indwelling urinary catheter; ostomies; dressings; risk of falls; medication; returns and referrals, totaling 32 guidelines for informal caregivers. The checklist was submitted to two validation stages and, after implementing the changes suggested by the judges, a content validity index of 100% agreement was obtained between the evaluators, with a Cronbach’s Alpha of 0.84 and an intraclass correlation index of 0.80. Conclusions: The checklist presents good reliability, intraclass correlation, and content validation, and can be applied in professional practice and scientific settings regarding the transition to hospital discharge of critically ill patients, helping to promote continued care at home. ; Introdução: a utilização de ferramentas na pré-alta hospitalar capacita a equipe de enfermagem na orientação de cuidadores informais, promovendo a continuidade do cuidado no domicílio, o que pode minimizar reinternações. Objetivo: construir e validar um checklist para apoiar a equipe de enfermagem na orientação de cuidadores informais sobre os cuidados domiciliares no ...

وصف الملف: application/pdf

العلاقة: https://dialnet.unirioja.es/servlet/oaiart?codigo=9378316Test; (Revista) ISSN 2027-5374; (Revista) ISSN 1657-5997

الإتاحة: https://dialnet.unirioja.es/servlet/oaiart?codigo=9378316Test

المؤلفون: Li, Lin

مرشدي الرسالة: Strachan, Patricia, Health Sciences

مصطلحات موضوعية: Healthcare transition, transition to adulthood, transition to adult care, youth, adolescents, medical complexity, case study, qualitative

الوصف: Background: A growing population of youth with medical complexity (YMC) are surviving into adulthood and being forced to transition from pediatric to adult health care. YMC and their families face significant challenges during this transition, putting them at risk for service fragmentation, inadequate care, and negative health outcomes. Existing interventions to support transition continue to have limited benefits for this group, demonstrating a clear need for tailored supports, informed by the perspectives of YMC and their families. Currently, these families’ transition experiences are poorly understood in the Canadian context. Thus, the aim of this dissertation was to holistically examine the experiences of families of YMC with the transition to adult care in Ontario. Methods: This sandwich thesis consists of: 1) a meta-ethnography synthesizing qualitative literature about the experiences of YMC and their families during the transition to adulthood; and 2) a patient-oriented qualitative case study exploring: i) how families of YMC adapt to the transition to adult care; ii) the influence of contextual factors; and iii) family recommendations for support. Findings: Transition impacts nearly all aspects of the youth’s and family’s lives. Families encounter numerous challenges in their pursuit of a good future and they “survive” by advocating, making sacrifices, and persisting despite inequities. Furthermore, families’ experiences are shaped by the complex interplay of personal and environmental factors. Conclusion: Implications for nursing practice, health care provider education, and health policy focus on: supporting nurses to provide instrumental and psychological support to families; building capacity in primary care (e.g., through nurse-led models of care); training health professionals on complex care management; and advocating for system-wide strategies to improve health care transition. Future research should prioritize the co-design and evaluation of interventions to address families’ information and emotional needs and training initiatives to facilitate the implementation of recommendations into practice.
Thesis
Doctor of Philosophy (PhD)
Youth with medical complexity have serious illness and intensive care needs. Recent advances in technology have led to more of these youth living into adulthood and moving to adult health care. The transition to adult care puts their health at risk and is highly stressful for their families. Currently, little is known about how these families cope with this transition and what help they need. This thesis aims to address these gaps by reviewing existing research and interviewing youth and families about their experiences. Findings show that the transition to adult care greatly affects many parts of the youth’s and family’s lives. Families cope with these changes by advocating, making sacrifices, and persisting in the face of inequities. Study findings can help guide nurses, other health care providers, and policy makers to better support these youth and families in their transition to adult care.

الإتاحة: http://hdl.handle.net/11375/29908Test

المؤلفون: Schwartz, Jaclyn K., Agrawal, Mavara, Treminio, Ingris, Espinosa, Sofia, Rodriguez, Melissa, Richard, Lynne

المصدر: Advances in Autism, 2020, Vol. 6, Issue 2, pp. 153-164.

الوصول الحر: http://www.emeraldinsight.com/doi/10.1108/AIA-07-2019-0022Test

المؤلفون: Ravens Esther, Becker Johanna, Pape Lars, Ernst Gundula

المصدر: Journal of Transition Medicine, Vol 2, Iss 1, Pp 441-57 (2020)

مصطلحات موضوعية: adolescent, adult, systematic review, transition, transition to adult care, transitional care, young, young people, Pediatrics, RJ1-570

الوصف: Chronically ill young people must transition to the adult health care service after their 18th birthday. The transition from child centred paediatric care to the adult health care service is not simply limited to the change from familiar structures to something unknown, but includes the entire process of growing up, of individuals becoming independent from their parents and taking responsibility for their own disease management. Young people are at particular risk of losing the connection to medical care during this phase and the transition of young people with chronic conditions is associated with a high risk of declining adherence and worsening health status. Studies suggest that transition programs might be helpful, yet there is no evidence as to whether risks can be reduced or which intervention components are particularly conducive to better outcome. This study aimed to identify transition-specific interventions and evaluate their effect on the improvement of psychosocial parameters, such as health related quality of life and adherence of patients. A systematic literature review was conducted. Electronic databases (Cochrane, Embase, Pubmed, Web of Science) were searched by two independent reviewers for intervention studies aiming to improve transition. Grey literature was also searched. Studies were included if they evaluated transition-specific interventions aiming to improve psychosocial or adherence parameters of participants aged 12 years and older suffering from a chronic condition. Both controlled trials and studies with measurements before an after the intervention were included. The GRADE approach was used to assess the quality of evidence. The inclusion criteria was met by forty studies. Patients suffered from different chronic conditions, such as inflammatory bowel disease, type 1 diabetes or juvenile idiopathic arthritis. Transition interventions used several program components, such as transition coordinators, patient education programs or web-based interventions. Outcomes included quality of life, transition-specific knowledge, adherence and loss to follow up. Thirty-eight studies showed beneficial effects in the intervention group, respectively after intervention. The overall study quality was low. A large number of studies evaluating transition-specific interventions was included. Transition-specific interventions seem to have beneficial effects on psychosocial outcomes and adherence. The promotion of health literacy, appointment arrangement service and the use of technical elements (websites, SMS) seem to be particularly helpful in the transition process. As the patient population was diverse, the results can be transferred to other diseases. Even though the overall study quality was poor, it is possible to draw some conclusions. Future studies should aim to include large numbers of patients over extended periods of time in order to assess long-term outcomes.

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/2568-2407Test

الوصول الحر: https://doaj.org/article/c1247dfcf0964227aa94e2175ba245d5Test

المؤلفون: Amanda Botelho, Pedro Norton Gonçalves Dias, Andre Hiroki Suyama Tsuji, Mila Torii Corrêa Leite

المصدر: Einstein (São Paulo), Vol 19 (2022)

مصطلحات موضوعية: Transitional care, Adolescent, Child, General surgery, Transition to adult care, Medicine

الوصف: ABSTRACT Objective To identify among pediatric surgeons across Brazil how the transition of pediatric patients to adult clinics is carried out. Methods A questionnaire was emailed to pediatric surgeons registered with the Associação Brasileira de Cirurgia Pediátrica in 2018. The data assessed included training time, maximum age of care, subspecialty of practice, outpatient follow-up of adult patients, reason for continuing care of adult patients, referral to adult specialties, concern with transition of care, and what has been done to improve it. Results Most pediatric surgeons had more than 20 years of experience, and approximately 61% worked simultaneously at a public hospital, private hospital and private office. The maximum age of care at public, private hospitals and private offices proved to be quite varied. The follow-up of patients aged over 18 years at public hospitals, private hospitals and private clinics wase 32%, 23.58% and 20.75%, respectively. The main reason for patients aged over 18 years continued to be accompanied by pediatric surgeons was lack of knowledge about the disease by adult specialties. Most patients were referred to the adult specialty of the hospital, and roughly 37% of pediatric surgeons responded that they were in contact with the adult specialty. Most believed in autonomy of care of their patients and were concerned with transition of care. Conclusion Transition of care is a relevant issue that needs to be studied and debated to ensure an appropriate long-term follow-up.

وصف الملف: electronic resource

العلاقة: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1679-45082021000100259&tlng=enTest; http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1679-45082021000100259&tlng=ptTest; https://doaj.org/toc/2317-6385Test

الوصول الحر: https://doaj.org/article/25b4eea3366d4257a0708d8375f1ae99Test

المؤلفون: Russet, Frederick, Humbertclaude, Veronique, Davidovic Vrljicak, Nikolina, Dieleman, Gwen C., Dodig-Ćurković, Katarina, Franic, Tomislav, Gerritsen, Suzanne E., de Girolamo, Giovanni, Hendrickx, Gaelle, Kerbage, Hala, McNicholas, Fiona, Maras, Athanasios, Paramala, Santosh, Paul, Moli, Schandrin, Aurélie, Schulze, Ulrike M. E., Street, Cathy, Tuomainen, Helena, Wolke, Dieter, Singh, Swaran P., Tremmery, Sabine, Purper-Ouakil, Diane

مصطلحات موضوعية: transition, general adult psychiatry, training, DDC 610 / Medicine & health, Adolescent psychiatry, Child psychiatry, Mental health services, Transition to adult care, Transitional care, Psychiatry, Education, Europe, Kinderpsychiatrie, Jugendpsychiatrie, Psychiatrische Versorgung, Transition , Europa

الوصف: Background In mental health, transition refers to the pathway of young people from child and adolescent to adult services. Training of mental health psychiatrists on transition-related topics offers the opportunity to improve clinical practice and experiences of young people reaching the upper age limit of child and adolescent care. Methods National psychiatrist's organizations or experts from 21 European countries were surveyed 1/ to describe the status of transition in adult psychiatry (AP) and child and adolescent psychiatry (CAP) postgraduate training in Europe; 2/ to explore the amount of cross-training between both specialties. This survey was a part of the MILESTONE project aiming to study and improve the transition process of young people at the service boundary. Results Transition was a mandatory topic in the AP curriculum of 1/19 countries (5%) and in the CAP curriculum of 4/17 countries (24%). Most topics relevant for transition planning were addressed during AP training in 7/17 countries (41%) to 10/17 countries (59%), and during CAP training in 9/11 countries (82%) to 13/13 countries (100%). Depending on the training models, theoretical education in CAP was mandatory during AP training in 94% (15/16) to 100% of the countries (3/3); and in AP during CAP training in 81% (13/16) to 100% of the countries (3/3). Placements were mandatory in CAP during AP training in 67% (2/3) to 71% of the countries (12/17); and in AP during CAP training in 87% (13/15) to 100% of the countries (3/3). Discussion and Conclusion Specific training about transition is limited during CAP and AP postgraduate training in Europe. Cross-training between both specialties offers a basis for improved communication between child and adult services but efforts should be sustained in practical training. Recommendations are provided to foster further development and meet the specific needs of young people transitioning to adult services. ; publishedVersion

وصف الملف: application/pdf; application/octet-stream; image/tiff

العلاقة: https://www.frontiersin.org/articles/10.3389/fpsyt.2021.768206/full#supplementary-materialTest; http://dx.doi.org/10.18725/OPARU-44454Test; https://oparu.uni-ulm.de/xmlui/123456789/44530Test; http://nbn-resolving.de/urn:nbn:de:bsz:289-oparu-44530-7Test

الإتاحة: https://doi.org/10.18725/OPARU-44454Test
https://oparu.uni-ulm.de/xmlui/123456789/44530Test
http://nbn-resolving.de/urn:nbn:de:bsz:289-oparu-44530-7Test

المؤلفون: Scheers, Isabelle

المساهمون: UCL - SSS/IREC/PEDI - Pôle de Pédiatrie, UCL - (SLuc) Service de gastro-entérologie et hépatologie pédiatrique

المصدر: Best practice & research. Clinical gastroenterology, Vol. 56-57, p. 101782 [1-8] (2022)

مصطلحات موضوعية: Adult, Child, Exocrine Pancreatic Insufficiency, Humans, Mutation, Pancreatitis, Chronic, Transition to Adult Care, Hereditary pancreatitis, PRSS1, Shwachman-Bodian-diamond syndrome

الوصف: Hereditary pancreatitis (HP) encompasses two distinct disease groups: the first manifests as congenital exocrine pancreatic insufficiency (EPI), and the second includes hereditary forms of pancreatitis. EPI represents the ultimate expression of gland function loss. Cystic fibrosis is by far the most frequent aetiology of early-onset EPI; genetics and a growing understanding of the disease mechanisms have paved the way for innovative and personalized treatment approaches. Efforts are ongoing to further decipher the pathophysiology and explore new therapies for other causes of EPI. HP occurs in patients carrying mutations in genes encoding digestive proteases or proteins playing an important role in proper pancreatic function and homeostasis. Improved sequencing techniques have led to the discovery of several causal and disease promoting genes. Most forms of HP have a paediatric onset but complications usually manifest during adulthood. Surveillance in experienced centres is mandatory to diagnose and address these complications in a timely manner.

العلاقة: boreal:260973; http://hdl.handle.net/2078.1/260973Test; info:pmid/35331395; urn:ISSN:1521-6918; urn:EISSN:1532-1916

الإتاحة: https://doi.org/10.1016/j.bpg.2021.101782Test
http://hdl.handle.net/2078.1/260973Test

المؤلفون: Canares, Glenn, Clarke, Roxanne, Caffrey, Erica, Chavis, Sydnee

مصطلحات موضوعية: Dental Care, Transition to Adult Care, Dental Care for Disabled, Caregiver Burden

الوصف: The article processing charges (APC) for this open access article were partially funded by the Health Sciences and Human Services Library's Open Access Publishing Fund for Early-Career Researchers ; Few studies have investigated the concerns of caregivers of adolescents with special health-care needs (ASHCN) regarding the barriers and challenges of transitioning from a pediatric to an adult-based dental home. The purpose of this study was to assess these perceptions. Methods. A 23-question survey was administered to guardians of ASHCN who presented to the pediatric dental clinic at the University of Maryland. Question types were either multiple choice, Likert scale responses, or openended. A descriptive analysis and Fisher’s exact test were performed. Keywords were evaluated from the open-ended answers. Results. Twenty-seven caregivers completed the survey over a six-month period. Sixty-six percent of caregivers were aware that dental needs change as child ages and thought that transitioning was a logical next step, 78% had concerns about transitional care, and 70% did not have the desire to transition. Fisher’s exact analysis comparing awareness of transition versus the desire to transition was p < 0.10. Conclusion. Most caregivers were aware of the changing dental needs of ASHCN and believed transitioning was a logical step. Many caregivers lacked readiness and perceived multiple barriers to transitioning. Awareness of the need to transition from pediatric to adult-based dental homes was not correlated with the readiness to transition.

العلاقة: http://hdl.handle.net/10713/20980Test

الإتاحة: http://hdl.handle.net/10713/20980Test

المؤلفون: Price, Anna, Mitchell, Siobhan, Janssens, Astrid, Eke, Helen, Ford, Tamsin, Newlove-Delgado, Tamsin

المصدر: Price , A , Mitchell , S , Janssens , A , Eke , H , Ford , T & Newlove-Delgado , T 2022 , ' In transition with attention deficit hyperactivity disorder (ADHD): children’s services clinicians’ perspectives on the role of information in healthcare transitions for young people with ADHD ' , BMC Psychiatry , vol. 22 , 251 . https://doi.org/10.1186/s12888-022-03813-6Test

مصطلحات موضوعية: ADHD, Adolescent, Information, Mental health, Qualitative, Transition, Parents/psychology, State Medicine, Humans, Transition to Adult Care, Mental Health Services, Adult, Attention Deficit Disorder with Hyperactivity/psychology, Child

الوصف: Background: National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children’s services. Methods: Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with 15 paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care. Results: Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children’s services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process. Conclusions: These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult ...

وصف الملف: application/pdf

العلاقة: https://portal.findresearcher.sdu.dk/da/publications/c400a366-cc42-4add-9c35-ccfab6fa4361Test

الإتاحة: https://doi.org/10.1186/s12888-022-03813-6Test
https://portal.findresearcher.sdu.dk/da/publications/c400a366-cc42-4add-9c35-ccfab6fa4361Test
https://findresearcher.sdu.dk/ws/files/202267493/s12888_022_03813_6.pdfTest