Successful healthcare transition for youth with special healthcare needs is a team effort

2021 ◽  
Vol 46 (11) ◽  
pp. 38-43
Author(s):  
Rhonda G. Cady ◽  
Catherine Erickson ◽  
Debbi Simmons Harris ◽  
Tracy Nickelsen
2019 ◽  
Vol 33 (2) ◽  
pp. 180-192
Author(s):  
Laura M. Heron ◽  
Rumi Agarwal ◽  
Joel Greenup ◽  
Marlaina Maddux ◽  
Nicole Attong ◽  
...  

2013 ◽  
Vol 55 (3) ◽  
pp. 803-811 ◽  
Author(s):  
Fareed Iqbal ◽  
Shafquat Zaman ◽  
Sharad Karandikar ◽  
Charles Hendrickse ◽  
Douglas M. Bowley

Author(s):  
Gitte Normann ◽  
Kirsten Arntz Boisen ◽  
Peter Uldall ◽  
Anne Brødsgaard

AbstractObjectivesYoung adults with cerebral palsy (CP) face potential challenges. The transition to young adulthood is characterized by significant changes in roles and responsibilities. Furthermore, young adults with chronic conditions face a transfer from pediatric care to adult healthcare. This study explores how living with CP affects young adults in general, and specifically which psychosocial, medical and healthcare needs are particularly important during this phase of life.MethodsA qualitative study with data from individual, semi-structured, in-depth interviews with six young adults with CP (ages 21–31 years) were transcribed verbatim and analyzed. The participants were selected to provide a maximum variation in age, gender, Gross Motor Function Classification System score and educational background. A descriptive thematic analysis was used to explore patterns and identify themes.ResultsThree themes were identified: “Being a Young Adult”, “Development in Physical Disability and New Challenges in Adulthood” and “Navigating the Healthcare System”. The three themes emerged from 15 sub-themes. Our findings emphasized that young adults with CP faced psychosocial challenges in social relationships, participation in education and work settings and striving towards independence. The transition to young adulthood led to a series of new challenges that the young adults were not prepared for. Medical challenges included managing CP-related physical and cognitive symptoms and navigating adult health care services, where new physicians with insufficient knowledge regarding CP were encountered.ConclusionThe young adults with CP were not prepared for the challenges and changes they faced during their transition into adulthood. They felt that they had been abandoned by the healthcare system and lacked a medical home. Better transitional care is urgently needed to prepare them for the challenges in young adulthood.


2021 ◽  
Vol 23 (1) ◽  
pp. 10-19
Author(s):  
Shivam Gupta ◽  
Priyanka Das ◽  
Siddhartha Kumar ◽  
Arindam Das ◽  
P. R. Sodani

Objective: To map the range of access barrier indicators for which data can be derived from the three most common health related household surveys in India. Methods: A mapping review study was conducted to identify access dimensions and indicators of access barriers for maternal and child health (MCH) services included in three household surveys in India: National Family Health Survey (NFHS), District Level Household and Facility Survey (DLHS) and Annual Health Survey (AHS). Results: The Tanahashi framework for effective coverage of health services was used in this study, and 12 types of access barriers were identified, from which 23 indicators could be generated. These indicators measure self-reported access barriers for unmet healthcare needs through delayed care, as well as forgone care, and unsatisfactory experiences during health service provision. Multiple barriers could be identified, although there was marked heterogeneity in variables included and how barriers were measured. Conclusions: This study identified tracer indicators that could be used in India to monitor the population that experiences healthcare needs but fails to seek and obtain appropriate healthcare, and determine what the main barriers are. The surveys identified are well validated and allow the disaggregation of these indicators by equity stratifiers. Given the variability of the frequency and methodologies used in these surveys, comparability could be limited.


2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Scovia Nalugo Mbalinda ◽  
Sabrina Bakeera-Kitaka ◽  
Derrick Lusota Amooti ◽  
Eleanor Namusoke Magongo ◽  
Philippa Musoke ◽  
...  

Abstract Background Whereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. Methods Data presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care. Results The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition. Conclusion The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition.


Diagnostics ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. 151
Author(s):  
Raphael A. Yaakov ◽  
Özgür Güler ◽  
Tim Mayhugh ◽  
Thomas E. Serena

The current public health crisis has highlighted the need to accelerate healthcare innovation. Despite unwavering levels of cooperation among academia, industry, and policy makers, it can still take years to bring a life-saving product to market. There are some obvious limitations, including lack of blinding or masking and small sample size, which render the results less applicable to the real world. Traditional randomized controlled trials (RCTs) are lengthy, expensive, and have a low success rate. There is a growing acknowledgement that the current process no longer fully meets the growing healthcare needs. Advances in technology coupled with proliferation of telehealth modalities, sensors, wearable and connected devices have paved the way for a new paradigm. Virtual randomized controlled trials (vRCTs) have the potential to drastically shorten the clinical trial cycle while maximizing patient-centricity, compliance, and recruitment. This new approach can inform clinical trials in real time and with a holistic view of a patient’s health. This paper provides an overview of virtual clinical trials, addressing critical issues, including regulatory compliance, data security, privacy, and ownership.


Sign in / Sign up

Export Citation Format

Share Document