The most important needs and preferences of patients for support from health care professionals: A reflective practice on (transitional) care for young adults with Juvenile Idiopathic Arthritis

2017 ◽  
Vol 100 (10) ◽  
pp. 1961-1964 ◽  
Author(s):  
Judy W. Ammerlaan ◽  
Harmieke van Os-Medendorp ◽  
Nienke C. de Boer-Nijhof ◽  
Berent Prakken ◽  
Johannes W.J. Bijlsma ◽  
...  
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Juvenile Idiopathic Arthritis ◽  
Reflective Practice ◽  
Health Care Professionals ◽  
Transitional Care

scholarly journals PARE0017 THE DREAMCATCHER – AN INNOVATIVE TOOL FOCUSING ON POSSIBILITIES INSTEAD OF LIMITATIONS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1294.1-1294
Author(s):  
C. Helin Hollstrand ◽  
K. Nilke Nordlund
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Rheumatic Disease ◽  
Health Care Professionals ◽  
Behavioral Science ◽  
Resource Planning ◽  
Pain Scale ◽  
Digital Tool ◽  
Starting Point ◽  
National Quality

Background:With the launch of The Swedish Young Rheumatics Report in April of 2018, we also presented new way of thinking and a tool called the Dreamscale, our complement to the traditional VAS scale used to assess pain. In October of 2018, we organized a workshop together with communication consults where we invited some of our members in different ages and health care professionals working with children, youths and young adults with rheumatic diseases, to try and reach a joint definition of what the Dreamscale is and could be, as we saw its huge potential. This is where the idea of the Dreamcatcher was born.Objectives:The objective is to create an innovative digital tool for young people with rheumatic disease. It takes its starting point in what is healthy and what is possible, rather than focusing on sickness and limitations. Using behavioral science, nudging and social functions, the Dreamcatcher has the potential to lower the barriers to living an active lifestyle, while also serving as a tool for dialogue with health care professionals, resulting in more efficient meetings, better resource planning and the gathering of valuable data to the national quality registers. It is also a digital tool with a big potential for development thanks to its open source code and its focus on enabling activity and participation, there is an obvious potential to develop its functions to also serve other actors and patient groups.Methods:We teamed up with communication bureau Gullers Grupp, pharmaceutical company Pfizer, and two health care clinics in Stockholm, one for children and youths with rheumatic disease and one for adults, and received funding for one year of development from Vinnova, the Swedish innovation authority, in April of 2019. We started the project by conducting a study to try and narrow down what focuses the Dreamcatcher should have. The pilot study contains both workshops with patients, both children, youths and young adults, and with teams of health care professionals, as well as more in-depth interviews with both patients and health care professionals. Based on the study, we will develop a prototype of what the Dreamcatcher could look like, and it will most likely be an application used for smartphones.Results:The study narrows down the Dreamcatcher into three things: the Dreamscale, Dream data, and the Dream collective.The Dreamscaleis as previously explained a complement to the traditional pain-scale and a tool for patients to set goals towards their dreams, and for patients and health care professionals to co-plan care and medical treatment based on what’s most important to the patient.Dream datais where patients can self-track their disease, data which is also available for the health care to view and therefore to be better prepared before meeting with the patient. It is also a goal to have the Dream data transferred to the national quality registers.The Dream collectiveis a social function where patients using the app can connect and get inspired by each other. It is a place to share your dreams and build a community to show that rheumatic disease isn’t something that should ever stop you from going after your dreams!Conclusion:The prototype of the Dreamcatcher will be presented in May of 2020 and we think this it has great potential to help shift focus withing health care, to not just focusing on sickness and limitations but rather on dreams, joy of life and possibilities!References:[1]https://ungareumatiker.se/nytt-digitalt-patientverktyg-unga-reumatiker-tar-fram-dromfangaren/[2]https://www.youtube.com/watch?v=zD6PwSKeb8IDisclosure of Interests:None declared

scholarly journals An e-Prehabilitation System of Care for Teenagers and Young Adults Diagnosed With Cancer: Protocol for a Qualitative Co-Design Study (Preprint)

2018 ◽  
Author(s):  
Lisa McCann ◽  
Kathryn A McMillan ◽  
Christopher Hewitt
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Data Collection ◽  
Health Care Professionals ◽  
Information Provision ◽  
System Of Care ◽  
Design Study ◽  
Care Experience ◽  
Accessible Information ◽  
Teenagers And Young Adults

BACKGROUND A diagnosis of cancer in young adulthood can pose many different and unique challenges for individuals. The provision of adequate and appropriate information as well as care and support for teenagers and young adults at the time of diagnosis is central to their health care experience going forward. Moreover, appropriate and accessible information provision is critical to ensure that young individuals with cancer feel equipped and empowered to make decisions about, and be involved in, their treatment and recovery throughout their experience; this is a concept known as prehabilitation. As digital interventions and resources that support teenagers and young adults with cancer are an increasingly desirable part of health care provision, this study will focus on the development of an age- and population-appropriate electronic prehabilitation (e-Prehabilitation) system of care. OBJECTIVE We will conduct an exploratory, co-design research project that will inform the development of an e-Prehabilitation system of care to support teenagers and young adults diagnosed with cancer. A collaborative approach to data collection and prototype design will ensure that a patient-centered approach is embedded throughout. METHODS A qualitative, co-design study utilizing surveys, interviews, and focus group discussions is being conducted with teenagers and young adults, health care professionals, and technologists. RESULTS This research study is in progress; recruitment and data collection activities have commenced and findings are expected in early 2019. CONCLUSIONS The findings of this study will have important implications for informing the future development and evaluation of an e-Prehabilitation system of care to support teenagers and young adults diagnosed with cancer. REGISTERED REPORT IDENTIFIER RR1-10.2196/10287

An urge for change: Transitional care for young adults with juvenile idiopathic arthritis

2013 ◽  
Vol 92 (1) ◽  
pp. 127-129 ◽  
Author(s):  
Judy W. Ammerlaan ◽  
Lieske W. Scholtus ◽  
Hans J.W.J. Bijlsma ◽  
Berent J. Prakken ◽  
Aike A. Kruize
Keyword(s):  
Young Adults ◽  
Juvenile Idiopathic Arthritis ◽  
Transitional Care

scholarly journals Substance Addicted Mothers Need Multidisciplinary Treatment Modalities

2017 ◽  
Vol 1 (1) ◽  
Keyword(s):  
United States ◽  
Health Care ◽  
Substance Use ◽  
Young Adults ◽  
Pregnant Women ◽  
Health Care Professionals ◽  
Multidisciplinary Treatment ◽  
Marijuana Use ◽  
Treatment Modalities

Substance use during pregnancy is not so rare as health care professionals could easily expect. Actually, 6 % of pregnant women have some misuse during pregnancy. Marijuana use has been in the news lately and when attitudes toward it have become more tolerant especially among young adults and use is becoming more popular, it is no surprise use also during pregnancy is coming more prevalent. In United States, 0.88 % of women use it during pregnancy [1].

scholarly journals Health-Care Professionals' Assessments of, and Recommendations for, Sexual-Health Education and Service Provision for Young People in Tehran

2021 ◽  
Vol 9 ◽  
Author(s):  
Narges Sheikhansari ◽  
Charles Abraham ◽  
Sarah Denford
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Young People ◽  
Sexual Health ◽  
Health Care Professionals ◽  
Service Provision ◽  
Cultural Barriers ◽  
Structured Interviews ◽  
Supported Education ◽  
Design And Methods

Background: Only limited Sexual Health and Relationships Education (SHRE) is provided in Iranian schools and universities while research has highlighted demand and need for improved SHRE among young adults. We explored health-care professionals' (HCPs) assessments of, and recommendations for, SHRE and service provision for young people in Tehran.Design and Methods: Semi-structured interviews were conducted with a sample of 17 HCPs based in Tehran and verbatim transcripts were analyzed using thematic analysis.Results: Participants confirmed the need for improved SHRE and service provision for young adults. HCPs described how a lack of reliable educational resources for young adults, taboo and cultural barriers, and a lack of trust and confidentiality prevented young people from accessing information and services. They unanimously supported education and services to be augmented, and provided recommendations on how this could be achieved.Conclusions: A number of positive suggestions for the improvement of SHRE and Iranian sexual health services in Iran were identified.

scholarly journals “We Just Take Care of Each Other”: Navigating ‘Chosen Family’ in the Context of Health, Illness, and the Mutual Provision of Care amongst Queer and Transgender Young Adults

2020 ◽  
Vol 17 (19) ◽  
pp. 7346
Author(s):  
Nina Jackson Levin ◽  
Shanna K. Kattari ◽  
Emily K. Piellusch ◽  
Erica Watson
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Health Care Professionals ◽  
Phenomenological Approach ◽  
Mutual Aid ◽  
Medical Systems ◽  
Structured Interviews ◽  
Health And Illness ◽  
Definition Of ◽  
Provision Of Care

“Chosen family”—families formed outside of biological or legal (bio-legal) bonds—is a signature of the queer experience. Therefore, we address the stakes of “chosen family” for queer and transgender (Q/T) young adults in terms of health, illness and the mutual provision of care. “Chosen family” is a refuge specifically generated by and for the queer experience, so we draw upon anthropological theory to explore questions of queer kinship in terms of care. We employ a phenomenological approach to semi-structured interviews (n = 11), open coding, and thematic analysis of transcriptions to meet our aims: (1) Develop an understanding of the beliefs and values that form the definition of “chosen family” for Q/T young adults; and (2) Understand the ways in which “chosen family” functions in terms of care for health and illness. Several themes emerged, allowing us to better understand the experiences of this population in navigating the concept of “chosen family” within and beyond health care settings. Emergent themes include: (1) navigating medical systems; (2) leaning on each other; and (3) mutual aid. These findings are explored, as are the implications of findings for how health care professionals can better engage Q/T individuals and their support networks.

scholarly journals Improving health care transition and longitudinal care for adolescents and young adults with hydrocephalus: report from the Hydrocephalus Association Transition Summit

2019 ◽  
Vol 131 (4) ◽  
pp. 1037-1045 ◽  
Author(s):  
Michael A. Williams ◽  
Tessa van der Willigen ◽  
Patience H. White ◽  
Cathy C. Cartwright ◽  
David L. Wood ◽  
...  
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Health Care Professionals ◽  
Health Care Services ◽  
Care Transition ◽  
Health Care Transition ◽  
Professional Societies ◽  
Consensus Recommendations ◽  
Care Services ◽  
The Us

The health care needs of children with hydrocephalus continue beyond childhood and adolescence; however, pediatric hospitals and pediatric neurosurgeons are often unable to provide them care after they become adults. Each year in the US, an estimated 5000–6000 adolescents and young adults (collectively, youth) with hydrocephalus must move to the adult health care system, a process known as health care transition (HCT), for which many are not prepared. Many discover that they cannot find neurosurgeons to care for them. A significant gap in health care services exists for young adults with hydrocephalus. To address these issues, the Hydrocephalus Association convened a Transition Summit in Seattle, Washington, February 17–18, 2017.The Hydrocephalus Association surveyed youth and families in focus groups to identify common concerns with HCT that were used to identify topics for the summit. Seven plenary sessions consisted of formal presentations. Four breakout groups identified key priorities and recommended actions regarding HCT models and practices, to prepare and engage patients, educate health care professionals, and address payment issues. The breakout group results were discussed by all participants to generate consensus recommendations.Barriers to effective HCT included difficulty finding adult neurosurgeons to accept young adults with hydrocephalus into their practices; unfamiliarity of neurologists, primary care providers, and other health care professionals with the principles of care for patients with hydrocephalus; insufficient infrastructure and processes to provide effective HCT for youth, and longitudinal care for adults with hydrocephalus; and inadequate compensation for health care services.Best practices were identified, including the National Center for Health Care Transition Improvement’s “Six Core Elements of Health Care Transition 2.0”; development of hydrocephalus-specific transition programs or incorporation of hydrocephalus into existing general HCT programs; and development of specialty centers for longitudinal care of adults with hydrocephalus.The lack of formal HCT and longitudinal care for young adults with hydrocephalus is a significant health care services problem in the US and Canada that professional societies in neurosurgery and neurology must address. Consensus recommendations of the Hydrocephalus Association Transition Summit address 1) actions by hospitals, health systems, and practices to meet local community needs to improve processes and infrastructure for HCT services and longitudinal care; and 2) actions by professional societies in adult and pediatric neurosurgery and neurology to meet national needs to improve processes and infrastructure for HCT services; to improve training in medical and surgical management of hydrocephalus and in HCT and longitudinal care; and to demonstrate the outcomes and effectiveness of HCT and longitudinal care by promoting research funding.

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