Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative

被引:5
作者
Poti, Silvia [1 ]
Palareti, Laura [1 ]
Cassis, Frederica R. M. Y. [2 ]
Brondi, Sonia [1 ]
机构
[1] Univ Bologna, Dept Educ Studies Giovanni Maria Bertin, I-40126 Bologna, Italy
[2] Univ Sao Paulo, Fac Med, Clin Hosp, BR-05403000 Sao Paulo, SP, Brazil
关键词
health care professionals; subjective experience; chronic illness; hemophilia; cross-cultural; PHYSICIANS; MANAGEMENT; LIFE; ADOLESCENTS; EXPERIENCES; DISEASE; PATIENT; PEOPLE; MODEL;
D O I
10.2147/JMDH.S201759
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Assessing the viewpoints of health care professionals concerning their work with chronic patients is a relatively new research topic, widely overlooked in the literature. However, understanding their subjective work experience is highly relevant for identifying problems and perceived resources, enhancing health service organisation, improving relationships or communication with patients, and maintaining well-being. Purpose and method: Qualitative data from the "Haemophilia Experience, Results and Opportunities" Initiative - a research program aimed at investigating the psychosocial aspects of hemophilia - were used to evaluate the experiences of 62 professionals from seven countries around the world. Semi-structured interviews were submitted to thematic analysis of elementary contexts with the aid of T-Lab software. Results: Five dominant themes emerged, identifying the main challenges that professionals have to deal with in their everyday work practice: caring for impaired adult patients; handling policies and stakeholders; providing counselling on diagnosis and reproductive choices; considering the role of family dynamics; coping with adolescent patients. Conclusion: The outcomes of the study provide an opportunity to develop the area of the non-technical skills in the core curriculum of those who work with chronic illnesses by focusing on cross-professional competences and by improving a comprehensive care model for hemophilia patients.
引用
收藏
页码:361 / 375
页数:15
相关论文
共 40 条
[1]  
Aase M, 2008, J MED ETHICS, V34, P767, DOI 10.1136/jme.2007.023275
[2]   Ideal versus reality:: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia [J].
Åsbring, P ;
Närvänen, AL .
SOCIAL SCIENCE & MEDICINE, 2003, 57 (04) :711-720
[3]   A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders [J].
Baker, JR ;
Crudder, SO ;
Riske, B ;
Bias, V ;
Forsberg, A .
AMERICAN JOURNAL OF PUBLIC HEALTH, 2005, 95 (11) :1910-1916
[4]  
Boice MM, 1998, ADOLESCENCE, V33, P927
[5]   Approaches to the Difficult Patient/Parent Encounter [J].
Breuner, Cora Collette ;
Moreno, Megan A. .
PEDIATRICS, 2011, 127 (01) :163-169
[6]   Predictors of retention among HIV/hemophilia health care professionals [J].
Brown, LK ;
Schultz, JR ;
Forsberg, AD ;
King, G ;
Kocik, SM ;
Butler, RB .
GENERAL HOSPITAL PSYCHIATRY, 2002, 24 (01) :48-54
[7]   Emotional reactions of haemophilia health care providers [J].
Brown, LK ;
Stermock, AC ;
Ford, HH ;
Geary, M .
HAEMOPHILIA, 1999, 5 (02) :127-131
[8]   Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories [J].
Caputo, Andrea .
PSYCHOLOGY HEALTH & MEDICINE, 2014, 19 (02) :211-221
[9]   Psychosocial aspects of haemophilia: a systematic review of methodologies and findings [J].
Cassis, F. R. M. Y. ;
Querol, F. ;
Forsyth, A. ;
Iorio, A. .
HAEMOPHILIA, 2012, 18 (03) :e101-e114
[10]  
CRUTCHER JE, 1980, J FAM PRACTICE, V11, P933