Health Care Transitions最新文献

{"title":"Potential of patient portals to enhance adolescent asthma care engagement","authors":"Emma J. Clark MSc ,&nbsp;Whitney Chan ,&nbsp;Emily Gao ,&nbsp;Ilana Radparvar ,&nbsp;Rong Guo MS ,&nbsp;Ana Gomez BA ,&nbsp;Nashica Hamm BS ,&nbsp;Dariush Kafashzadeh MD ,&nbsp;Gery W. Ryan PhD ,&nbsp;Mindy K. Ross MD, MAS, MBA","doi":"10.1016/j.hctj.2025.100117","DOIUrl":"10.1016/j.hctj.2025.100117","url":null,"abstract":"<div><h3>Importance</h3><div>Electronic health record-based patient portals hold promise for health care transition (HCT), particularly for chronic conditions like asthma.</div></div><div><h3>Objective</h3><div>To understand the potential of a portal-based asthma care management module in adolescent patients with asthma and evaluate its performance and usability.</div></div><div><h3>Methods</h3><div>We completed semi-structured interviews to determine adolescent perceptions of a portal-based asthma care module and its potential for HCT. We prototype tested a portal-based asthma management module with adolescent patients (12–17 years old) with asthma for their upcoming pediatric pulmonary clinic visits and measured its performance and usability. We reported descriptive statistics for survey data, and content analysis for interviews.</div></div><div><h3>Results</h3><div>Sixteen adolescents completed interviews. Most interviewees favored the idea of using a module before visits and believed it could help them with HCT. We identified five themes: adolescent familiarity with the patient portal, perceived benefits, perceived barriers, suggestions for usability, and perspectives on a portal module’s potential role in supporting their asthma and HCT readiness for asthma management. Eleven adolescents tested the module. The percentage of asthma data captured from the physician visit notes with the module was higher compared to notes without (93.1 % [95 % CI: 90.3, 95.3] vs. 74.6 % [95 % CI: 71.0,77.6], p &lt; 0.005). The average System Usability Scale score of the module was 71 ± 9.6 (considered above average).</div></div><div><h3>Conclusions</h3><div>Our findings support the potential of portal-based based management modules to be accepted by adolescents with asthma and to engage adolescents more in their own care. We will continue to iterate the module for this population.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100117"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144860723","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health Care Transition Planning and Outcomes: What’s Next?","authors":"C. Betz, M. E. Díaz-González de Ferris","doi":"10.1016/j.hctj.2024.100045","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100045","url":null,"abstract":"","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"71 10","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139888199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What skills do adolescents and young adults desire as they prepare for adult health care?","authors":"Megan Patton ,&nbsp;Daniella San Martin-Feeney ,&nbsp;Brooke Allemang ,&nbsp;Zoya Punjwani ,&nbsp;Sophie Samborn ,&nbsp;Ken Pfister ,&nbsp;Laurel Ryan ,&nbsp;Andrew S. Mackie ,&nbsp;Susan Samuel ,&nbsp;Gina Dimitropoulos","doi":"10.1016/j.hctj.2024.100049","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100049","url":null,"abstract":"<div><h3>Background</h3><p>The transition from pediatric to adult care is a period associated with adverse health outcomes (e.g., health care dropout, health deterioration and poor adherence to management) for adolescents and young adults (AYA) with chronic conditions and their caregivers. AYA and caregivers often struggle to adapt to adult care settings resulting from a lack of preparedness and difficulties accessing services to manage their health conditions. To adequately design transition interventions and supports, it is critical to explore what skills AYA think would increase their confidence and ability to successfully move into adult health care.</p></div><div><h3>Methods</h3><p>The Transition Navigator Trial is a randomized controlled trial being conducted in Alberta, Canada, recruiting from three major tertiary care pediatric centers, in which half of participants receive a patient navigator, whose goal is to assist with this transition. Twenty-seven youth were interviewed at baseline, with a planned follow-up interview at the end of the trial. Participants were asked about their perspectives on the upcoming transition and how working with the navigator may assist with the transfer to adult-oriented services. Using an inductive approach to thematic analysis, baseline interviews were analyzed to explore AYA perspectives on their wants and needs for an upcoming transition to adult health care. The overarching guiding question is: what skills do AYA desire to assist with the transition to adult health care services?</p></div><div><h3>Results</h3><p>Two broad themes were generated based on participant baseline interviews: 1) ownership of care; and 2) system navigation. Participants identified that self-management and self-advocacy skills are essential for taking ownership of their own healthcare. Participants identified that even when they have acquired the necessary skills to take ownership of their care, there is a further step of system navigation that they might require external help with.</p></div><div><h3>Conclusions</h3><p>It has been highlighted in the literature that health-related knowledge, self-advocacy, and self-management skills promote a more successful transition, however, a gap exists in what youth prioritize as important skills. These findings exemplify that AYA want to gain skills that will allow for independence and success in the transition to adult health care. By involving youth in the development of future transition interventions, we can better understand the needs and priorities of AYA to assist in the success of transition to adult health care.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100049"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000096/pdfft?md5=058e94317f7e5a29ce998a7be863c5f3&pid=1-s2.0-S2949923224000096-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139908102","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Self-Management assistance for recommended treatment (SMART) IBD app randomized control trial in adolescents with IBD: Design and methodology","authors":"Caroline M. Roberts ,&nbsp;Jill M. Plevinsky ,&nbsp;Kaitlyn L. Gamwell ,&nbsp;Amy E. Noser ,&nbsp;Lee A. Denson ,&nbsp;Kevin A. Hommel","doi":"10.1016/j.hctj.2023.100031","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100031","url":null,"abstract":"<div><h3>Aims</h3><p>Adherence to medical regimens, including medications and appointments, is a significant concern for adolescent populations that warrants behavioral interventions. Negative health behaviors during adolescence can persist into adulthood and lead to long-term negative health outcomes. Due to the limited availability and resources for behavioral self-management intervention, many youth do not receive evidence-based behavioral care and continue to struggle with managing their illness. Therefore, there is a need for easily accessible mHealth interventions targeting self-management in order to reduce health care barriers and provide more timely and effective behavioral care particularly during this developmental stage.</p></div><div><h3>Methods</h3><p>We provide a description of the design and methodology of the Self-Management Assistance for Recommended Treatment (SMART) IBD App randomized controlled pilot trial in pediatric inflammatory bowel disease (IBD) that aims to test the preliminary efficacy of the SMART IBD app compared to a usual care (UC) arm. Thirty participants 13–17 years of age will be recruited and randomized in the trial. Those randomized to the intervention arm will use the app for four weeks, each with one weekly challenge that focuses on self-management. Participants in both arms will complete baseline assessments, daily diaries for four weeks, and post-treatment assessments.</p></div><div><h3>Conclusion</h3><p>We hypothesize that participants in the intervention arm will experience clinically significant improvements in their self-management compared to those in the UC arm at the post-treatment assessment. Findings from the current study could provide initial evidence to support self-management interventions in adolescents with health conditions via mobile health apps, thereby reducing health care barriers and strains on institutional and nursing resources. Mobile health apps may also be a preferred avenue to disseminate interventions to adolescents.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100031"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000314/pdfft?md5=de3b1a3f7b00a856c0b1d8d95e90f5d1&pid=1-s2.0-S2949923223000314-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138472056","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An exploration of anxiety and depressive symptoms among sexual and gender minority young adults visiting a drop-in center for youth experiencing homelessness","authors":"Lourence Misedah-Robinson ,&nbsp;Laura Witte ,&nbsp;Elizabeth Henneke ,&nbsp;MaDonna Land ,&nbsp;Vanessa Schick","doi":"10.1016/j.hctj.2024.100055","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100055","url":null,"abstract":"<div><h3>Background</h3><p>Research suggests that marginalized young adults, particularly sexual and gender minorities (SGM), face distinctive healthcare transition challenges. SGM often navigate a complex intersection of identities, experiences, and stressors that can contribute to mental health disparities. However, they often lack access to appropriate support and resources tailored to their needs, which can result in increased psychological distress. Drop-in centers are effective mental health interventions for marginalized communities. Therefore, we conducted a study to explore the healthcare access experiences and mental health outcomes of young adult SGM compared to their non-SGM counterparts.</p></div><div><h3>Methods</h3><p>We surveyed 151 young adults aged 18–25 who visited two drop-in centers for young adults experiencing homelessness in Houston, Texas, between October and November 2018. Depressive and anxiety symptoms were assessed using Patient Health Questionnaire- 4 (PHQ-4.ther variables included demographics, prior mental health diagnosis, and experiences of homelessness and involvement in justice.</p></div><div><h3>Results</h3><p>Transgender and gender-diverse individuals had higher proportions of anxiety symptoms than their cisgender counterparts, while gay and lesbian individuals were more likely to experience depressive symptoms. In general, SGM individuals were three times more likely to report a previous anxiety diagnosis and four times more likely to report a previous depression diagnosis than their non-SGM counterparts. However, we did not find a significant association between having anxiety or depressive symptoms with seeking healthcare, experiences of homelessness, and justice involvement.</p></div><div><h3>Conclusion</h3><p>The findings suggest that drop-in centers can provide targeted care for SGM youth with intersecting needs, thus improving their mental health outcomes. Nevertheless, more research is needed to understand further and inform more targeted and effective evidence-based interventions that support SGM young adults across the trajectory of experiences, changing needs, and care coordination over time during this critical and vulnerable transition to adulthood.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100055"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000151/pdfft?md5=2287a7849f2c88840b19e74ca0f4d2ee&pid=1-s2.0-S2949923224000151-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140122177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Role of primary care for individuals with childhood-onset neurologic conditions","authors":"Miho Osako ,&nbsp;Yui Yamaoka ,&nbsp;Yoko Mochizuki ,&nbsp;Takeo Fujiwara","doi":"10.1016/j.hctj.2023.100037","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100037","url":null,"abstract":"<div><h3>Background</h3><p>Individuals with childhood-onset neurologic conditions often face challenges in the pediatric-to-adult health care transition (HCT). Furthermore, the importance of implementing primary care is unrecognized. We investigated the situation of adults with childhood-onset neurologic conditions from the perspective of health care professionals (HCPs) in community- and hospital-based primary care practice.</p></div><div><h3>Design and methods</h3><p>Overall, 1334 HCPs in medical facilities across Tokyo (mainly in Kita, Nerima, and Itabashi Cities) were surveyed regarding their experience caring for adults with childhood-onset neurologic conditions. Snowball sampling was also deployed to enhance the input from various health professions. The questionnaire included quick response codes linked to web-based questionnaires identical to paper-based ones, enabling additional HCPs to answer the questionnaire. The survey included questions about the care provided by HCPs, the perceived challenges and worthwhileness of the care, and their views on HCT.</p></div><div><h3>Results</h3><p>We collected 276 responses (response rate, 20.7%): 224 by mail and 52 online. In total, 94 HCPs of the respondents (75 doctors, 11 nurses, 5 therapists, 2 care workers, and 1 medical social worker) involved in caring for this population were analyzed. Doctors and nurses managed medical devices, educated patients, and provided consultation and care. Doctors cited the management of comorbidities outside of their expertise and difficulties securing hospitalization during emergencies as barriers to care. HCPs found the valuable opportunities to enrich their clinical experience and long-term relationships with patients worthwhile. HCPs expressed the need for systems that guarantee patient hospitalization and multidisciplinary conferences between HCPs and specialists.</p></div><div><h3>Conclusion</h3><p>We described the roles of HCPs in community- and hospital-based primary care, which are vital components of HCT for adults with childhood-onset neurologic conditions. Their practice includes multidisciplinary involvement, patient education, and care coordination. For better HCT in this population, efforts are required to enhance HCPs’ capability to respond to patients with disabilities, patients’ multiple comorbidities, and families’ needs.</p></div><div><h3>Practice implications</h3><p>Further efforts to deepen community-based care are desired to improve HCT for people with childhood-onset neurologic conditions.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100037"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000375/pdfft?md5=c5c057b3cb4ff0f199618b0c2099209f&pid=1-s2.0-S2949923223000375-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139107369","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Wellbeing measurement among adults with Charcot-Marie-Tooth disease","authors":"Payton D. Rule,&nbsp;Megan W. Wolk,&nbsp;Patrick L. Hill","doi":"10.1016/j.hctj.2024.100053","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100053","url":null,"abstract":"<div><h3>Background and aims</h3><p>Wellbeing research among individuals with Charcot-Marie-Tooth disease (CMT) is limited. The goal of the current study is to characterize the challenges experienced by adults with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing.</p></div><div><h3>Methods</h3><p>In 2021, we recruited 288 US adults with CMT (<span><math><msub><mrow><mi>M</mi></mrow><mrow><mi>Age</mi></mrow></msub></math></span> = 60 years, 59% Female, 93% White) to take part in an online survey. Participants were presented with validated wellbeing and health measures, in addition to newly created measures specific to CMT, and then asked to provide free-response feedback about aspects of their lived experiences missing from these measures. Thematic analysis were applied to the free-response data to identify CMT-related difficulties that may impact wellbeing among adults with CMT.</p></div><div><h3>Results</h3><p>Results identified nine CMT-related challenges that are important to individuals with CMT and are often left out of wellbeing assessments in this population. The three most common themes identified were anxiety or worry, coping with loss of function or progression, and difficulty finding knowledgeable medical providers. Further, some aspects of the CMT experience may be comorbid.</p></div><div><h3>Interpretation</h3><p>These results can be used to inform future research and clinical practice in the CMT population.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100053"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000138/pdfft?md5=3dc8405b9d0a5a75c9eb7d0f91f22e81&pid=1-s2.0-S2949923224000138-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139986520","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of the iManage SCD mobile health application for transition","authors":"Caren Steinway ,&nbsp;Steffi Shilly ,&nbsp;Tanisha Belton ,&nbsp;Kim Smith-Whitley ,&nbsp;Sophia Jan ,&nbsp;Lisa A. Schwartz ,&nbsp;Lori E. Crosby","doi":"10.1016/j.hctj.2024.100074","DOIUrl":"10.1016/j.hctj.2024.100074","url":null,"abstract":"<div><h3>Objective</h3><div>This paper outlines the design and implementation of iManage SCD, a self-management mobile health application for adolescents and young adults (AYA) with sickle cell disease (SCD) during transition from pediatric to adult health care.</div></div><div><h3>Methods</h3><div>The Integrate, Design, Assess, Share (IDEAS) framework, emphasizing user insights, iterative design, rigorous assessment, and knowledge sharing, guided the development process. The design team consisted of researchers, psychologists, physicians, social workers, AYA with SCD, and parents of AYA with SCD (n = 16) across three states. Qualitative focus groups and interviews were conducted and analyzed using thematic analysis across the integrate and design phases. Point of use feedback from AYA with SCD was used to assess feasibility and acceptability.</div></div><div><h3>Results</h3><div>The development process was centered around tenants of the Social-ecological Model of Adolescent and Young Adult Readiness to Transition. Development integrated multidisciplinary perspectives, fostering a person-centered approach. The iterative design process involved collaboration with a digital health firm, Agency39A. Health equity and implementation considerations were addressed at individual, community, and healthcare system levels. Themes that emerged from focus groups with AYA, clinicians, and researchers in the integrate and design phases of development included recommendations for content and user experience features.</div></div><div><h3>Conclusions</h3><div>iManage SCD emerges as a comprehensive, user-friendly mobile health application, incorporating theoretical principles and direct user input. The development process demonstrated feasibility and acceptability, and the paper discusses dissemination strategies for the Community Health Workers and Mobile Health Programs to Help Young Adults with SCD Transition to Using Adult Healthcare Services (COMETS) study.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100074"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142531591","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparative analysis of characteristics amongyoungpeople discharged from adolescent medium secure psychiatric hospital","authors":"Charlotte A. Jones ,&nbsp;Simon A Hill ,&nbsp;Louise Dibben ,&nbsp;Sana Sajid ,&nbsp;Suchith Shetty ,&nbsp;Selma Majeed ,&nbsp;Peter Phiri","doi":"10.1016/j.hctj.2024.100047","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100047","url":null,"abstract":"<div><h3>Background</h3><p>Specialised forensic mental health provision for young people with mental disorders and high-risk behaviours has developed significantly in the UK. Despite this, research on the young people within secure settings remains limited. Adolescents in secure settings exhibit higher levels of mental disorders and have complex needs. This study aims to compare the demographic characteristics of patients discharged from an adolescent medium secure unit (AMSU) to different discharge destinations: community, another hospital, or custodial setting.</p></div><div><h3>Methods</h3><p>A retrospective study was conducted using data from 155 patients admitted to a UK AMSU from 2008 to 2021. Demographic data, clinical information and Millon Adolescent Clinical Inventory (MACI) scores were extracted from electronic health records. A descriptive statistical method was used to report observational differences in patient characteristics between discharge locations. Statistical analysis included Chi-squared tests and AVOVA testing.</p></div><div><h3>Results</h3><p>Patients discharged to different settings exhibited distinct demographic and clinical characteristics. Those discharged to custodial settings were predominantly male and often transferred from custodial settings. Those discharged to other hospitals were mostly females with a diagnosis of Borderline Personality Disorder. The community-discharged group had a higher frequency of admissions from other hospitals under civil sections. Multiple variables were found to be statistically significant in relation to discharge location including gender and age at discharge. Findings of the MACI were not statistically significant in relationship with discharge location.</p></div><div><h3>Conclusions</h3><p>The study enhances understanding of healthcare transitions from AMSUs. The influence of diagnoses, particularly personality disorders, and their connection to admission duration is explored, as is the influence of this on transitioning patients across care settings. The impact of trauma-informed, attachment focussed models of care in regards transitions from AMSUs is also examined. Despite diversity in discharge locations, self-reported personality questionnaires show consistent outcomes, demonstrating psychological similarities across groups. Further research is needed to understand post-discharge trajectories enabling targeted interventions and improved care pathways.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100047"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000072/pdfft?md5=890c21d52881a60dfbece034d1941819&pid=1-s2.0-S2949923224000072-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139975726","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"“We do it all”: A qualitative exploration of the caregiver role for young adults with cerebral palsy","authors":"Cristina A. Sarmiento ,&nbsp;Chloe Glaros ,&nbsp;Jessica Solomon Sanders ,&nbsp;Jordan M. Wyrwa ,&nbsp;Brooke Dorsey Holliman ,&nbsp;Lisa A. Brenner","doi":"10.1016/j.hctj.2023.100039","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100039","url":null,"abstract":"<div><h3>Aim</h3><p>To describe the complex roles of and crucial support provided by caregivers to young adults with cerebral palsy (CP) during the transition to adulthood.</p></div><div><h3>Method</h3><p>This was a qualitative study. We conducted 20 semi-structured interviews (13 caregiver; 7 patient/caregiver dyad) and analyzed data using a qualitative descriptive approach informed by phenomenological principles.</p></div><div><h3>Results</h3><p>We identified four major themes related to the roles that caregivers play during the transition to adulthood for young adults with CP: 1) caregivers as care coordinators; 2) navigating logistic and insurance barriers; 3) adjusting to adulthood and planning for an uncertain future; and 4) supporting maintenance of health, function, and quality of life. Overall, caregivers shared the many different ways that they act as advocates for young adults with CP. Many participants identified the extensive amount of time, energy, and financial resources required to appropriately provide care.</p></div><div><h3>Conclusions</h3><p>The transition to adulthood for young adults with CP is a challenging, uncertain, complex process for both adults with CP and their caregivers. Throughout this transition, caregivers also prioritize the happiness and quality of life of their adult children with CP. Our findings could be used by clinicians and researchers to develop and study patient- and family-centered transition processes for individuals with CP that attend to the struggles and priorities of youth with CP and caregivers alike.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100039"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000399/pdfft?md5=3ef1a84870e360a55fb382b03528caa0&pid=1-s2.0-S2949923223000399-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139050406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}