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Quality of life in people with syndromic heritable thoracic aortic disease and their relatives: a qualitative interview based study.
Orphanet J Rare Dis
January 2025
Department of Social Work, Child Welfare and Social Policy, Faculty of Social Science, Oslo Metropolitan University, Oslo, Norway.
Introduction: The purpose of this study was to investigate perceptions and opinions on what constitutes determinants for quality of life (QoL) in individuals with syndromic Heritable Aortic Disease (sHTAD), utilizing a qualitative study approach. Further to discuss clinical implications and direction for research.
Method: A qualitative focus group interview study was conducted of 47 adults (Marfan syndrome (MFS) = 14, Loeys-Dietz syndrome (LDS) = 11, vascular Ehlers Danlos syndrome (EDS) = 11, relatives = 11).
A Hermeneutic Phenomenological Study on Experiences of Patients Post Heart Transplantation.
Florence Nightingale J Nurs
February 2024
Department of Nursing, All India Institute of Medical Science, New Delhi, India.
The present study was conducted to explore the lived-in experiences of post-heart transplant patients. This study with a hermeneutic phenomenological approach was conducted on 23 heart transplant recipients in a tertiary hospital, AIIMS, New Delhi, India, from August to December 2020. Participants were selected through total enumerative sampling.
View Article and Find Full Text PDFOpportunities and Risks of Gender-Stereotypical Approach to Men in the Context of Education and Counselling Work Using the Example of Birth Preparation for Expectant Fathers At first glance, it seems absurd that families or mothers and fathers become addressees of social work when they decide to have a child. But the legislator has also formulated it: "Mothers and fathers as well as pregnant women and expectant fathers should be offered advice and help in questions of partnership and the development of parental parenting and relationship skills" (§16 paragraph 3 SGB VIII). One can argue that this makes sense, especially in complex and challenging times.
View Article and Find Full Text PDFEditorial: Community series in mental illness, culture, and society: dealing with the COVID-19 pandemic, volume VIII.
Front Psychiatry
June 2024
Mental Health Research Center, Psychosocial Health Research Institute, Department of Psychiatry, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.
A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca.
J Clin Med
August 2023
Social Research Unit on Health and Rare Diseases, Sociology and Social Work Department, University of Valladolid, 47002 Valladolid, Spain.
Hemophilia is a chronic, congenital/hereditary and X-linked disease, characterized by an insufficiency of factors VIII or IX, which are necessary for blood clotting. Those affected by hemophilia often suffer from particular psychosocial problems, both in the acceptance, coping, treatment and self-management of their disease and in their family and social relationships, which are often mediated by these circumstances. The aim of this study was to explore the experiences of people with hemophilia or their family members, of in a specific region of Spain, regarding the impact of having hemophilia.
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