2 results
9 - RAiISE: Advocating for Young People With Invisible Illnesses
- Edited by Louca-Mai Brady
-
- Book:
- Embedding Young People's Participation in Health Services
- Published by:
- Bristol University Press
- Published online:
- 25 February 2021
- Print publication:
- 07 October 2020, pp 231-248
-
- Chapter
- Export citation
-
Summary
Introduction
In this chapter, we discuss RAiISE (Raising Awareness of invisible Illnesses in Schools and Education), a charity founded in the United Kingdom that is led by young people, for young people. From the perspective of the Chief Executive Officer (CEO) and the Board of Trustees, all of whom have lived experience of invisible illnesses themselves or as a parent/carer, we will provide insight into day-to-day life for the charity and its unique journey from an initial idea of one young person diagnosed with a chronic health condition to a national organisation with a global presence. RAiISE is a positive example of young people leading health and wellbeing initiatives with the support of healthcare and education professionals, rather than simple instances of young people's engagement or involvement. It also highlights the importance of collaboration across sectors, including schools and charities, to ensure that young people with health conditions are adequately supported, acknowledging the wider impact of health on a young person's life – away from the hospital. In this chapter, we will refer to ‘invisible illnesses’, which for context, is an umbrella term for any health condition that isn't easily visible to others. This includes chronic conditions such as cystic fibrosis, diabetes, inflammatory bowel diseases and musculoskeletal diseases, among others – but also mental health illnesses such as anxiety, depression and schizophrenia. RAiISE attempts to be as inclusive as possible in reference to invisible illnesses and equally helps to place the spotlight on visible illnesses affecting young people too.
What matters to us: young people's perspective on participation in healthcare
The importance of young people's involvement in healthcare is undeniable, and recent years have shown a positive increase in the inclusion of young people's voices in decision-making processes in healthcare (Weil et al, 2015). While there are discussions in both child and adult healthcare, it is important to acknowledge that there is no distinct line or ‘cut-off’ between childhood and adulthood, and the ways in which these groups engage with healthcare, despite organisational and legal definitions of who is defined as a child or adult. Therefore, the ‘young person’ demographic must have a place to voice their own unique experiences and concerns of healthcare, which indeed differs from younger children and older adults with health conditions (Betz et al, 2013).
Anxiety reduction after pre-procedure meetings in patients with CHD
- Preston J. Boyer, Joshua A. Yell, Jennifer G. Andrews, Michael D. Seckeler
-
- Journal:
- Cardiology in the Young / Volume 30 / Issue 7 / July 2020
- Published online by Cambridge University Press:
- 05 June 2020, pp. 991-994
-
- Article
- Export citation
-
Background:
Cardiac catheterisations for CHD produce anxiety for patients and families. Current strategies to mitigate anxiety and explain complex anatomy include pre-procedure meetings and educational tools (cardiac diagrams, echocardiograms, imaging, and angiography). More recently, three-dimensionally printed patient-specific models can be added to the armamentarium. The purpose of this study was to evaluate the efficacy of pre-procedure meetings and of different educational tools to reduce patient and parent anxiety before a catheterisation.
Methods:Prospective study of patients ≥18 and parents of patients <18 scheduled for clinically indicated catheterisations. Patients completed online surveys before and after meeting with the interventional cardiologist, who was blinded to study participation. Both the pre- and post-meeting surveys measured anxiety using the State-Trait Anxiety Inventory. In addition, the post-meeting survey evaluated the subjective value (from 1 to 4) of individual educational tools: physician discussion, cardiac diagrams, echocardiograms, prior imaging, angiograms and three-dimensionally printed cardiac models. Data were compared using paired t-tests.
Results:Twenty-three patients consented to participate, 16 had complete data for evaluation. Mean State-Trait Anxiety Inventory scores were abnormally elevated at baseline and decreased into the normal range after the pre-procedure meeting (39.8 versus 31, p = 0.008). Physician discussion, angiograms, and three-dimensional models were reported to be most effective at increasing understanding and reducing anxiety.
Conclusion:In this pilot study, we have found that pre-catheterisation meetings produce a measurable decrease in patient and family anxiety before a procedure. Discussions of the procedure, angiograms, and three-dimensionally printed cardiac models were the most effective educational tools.