Background: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline.
Method: This qualitative study used semi-structured interviews. Nineteen interviews were conducted with parents of adults with Down syndrome. The main themes and subthemes were identified from the transcripts by using the framework method.
Results: Four main themes were identified which should be addressed in the guideline according to the parents: parents' support in medical care, patient-centred care, important medical topics and the organisation of medical care.
Conclusions: This study provides insights into parents' opinions about medical care for adults with Down syndrome. These insights are used in the construction of a guideline to improve medical care for adults with Down syndrome.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1111/jar.13173 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Wound care of Sweet syndrome in a patient with anaplastic lymphoma kinase-positive anaplastic large cell lymphoma: a case report.
J Wound Care
January 2025
The First Affiliated Hospital of Guangzhou University of Chinese Medicine, 510405, Guangzhou, China.
Sweet syndrome (SS), which is characterised by fever and erythematous tender skin lesions, has been shown to be associated with lymphoma. However, there are limited reported experiences on the wound care of SS in patients with lymphoma. This case report presents the wound care of SS in a patient with anaplastic lymphoma kinase (ALK)-positive anaplastic large cell lymphoma (ALK+ALCL).
View Article and Find Full Text PDFHypereosinophilic Syndrome Complicated by Eosinophilic Myocarditis: Embolic Stroke or Eosinophilic Stroke? A Case Report.
Turk Kardiyol Dern Ars
January 2025
Department of Cardiology, Isfahan University of Medical Sciences, Isfahan, Iran.
Hypereosinophilic syndrome (HES) is traditionally described as chronic peripheral eosinophilia with involvement of various organs and systems, including the heart and nervous system. In this report, we describe cardiac involvement and border zone stroke in a patient with idiopathic HES. A 37-year-old woman presented with sudden right-sided weakness and slurred speech, which began four days before admission, accompanied by palpitations, retrosternal exertional chest discomfort, dry cough, and progressive shortness of breath over approximately two months.
View Article and Find Full Text PDFChronic stress resulting from stressful life events and its role in the onset of primary Sjögren's syndrome: a comparative analysis using the modified Holmes-Rahe stress scale.
Stress
December 2025
Department of Rheumatology, Clinical Immunology, Geriatrics and Internal Medicine, Medical University of Gdańsk, Gdańsk, Poland.
Recent years brought considerable attention to the connection between chronic stress and the development of autoimmune diseases. However, little is still known about the impact of prolonged stress reactions on the onset and course of primary Sjögren Syndrome (pSS). This study aimed to seek for associations between chronic stress, resulting from stressful life events, and pSS.
View Article and Find Full Text PDFNon-Classical Complications of Adult-Onset Still's Disease: A Multicenter Spanish Study.
J Clin Med
January 2025
Department of Pediatric Rheumatology, Institut de Recerca Sant Joan de Déu, Hospital Sant Joan de Déu, Universitat de Barcelona, 08950 Barcelona, Spain.
To investigate the prevalence and clinical spectrum of atypical or non-classical complications in adult-onset Still's disease (AOSD) beyond macrophage activation syndrome (MAS) and to identify factors linked to their occurrence. Multicenter cross-sectional study of AODS cases included in the Spanish registry on Still's disease. This study included 107 patients (67% women), of whom 64 (59.
View Article and Find Full Text PDFMitigating the Risk of QTc Prolongation When Using Haloperidol for Acute Treatment of Cannabinoid Hyperemesis Syndrome in Adolescents and Young Adults.
J Clin Med
December 2024
Department of Pharmacy, CHOC Children's Hospital, Orange, CA 92868, USA.
: Cannabinoid Hyperemesis Syndrome (CHS), associated with long-term cannabinoid use, has been increasingly observed in emergency room visits as more states in the U.S. have legislatively permitted medical and recreational marijuana use.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!