Abstract:
:The study illuminates the subjective experience of haemophilia in people who took part in the Haemophilia Experience, Results and Opportunities (HERO) initiative, a quali-quantitative research program aimed at exploring psychosocial issues concerning this illness around the world. Applying a bottom-up analytic process with the help of software for textual data, we investigated 19 interviews in order to describe the core themes and the latent factors of speech, to explore the role of different variables in shaping the participants' illness experiences. The five themes detected are feeling different from others, body pain, acquisition of knowledge and resources, family history, and integration of care practices in everyday life. We illustrate how nationality, age, family situation, the use of prophylaxis or on-demand treatment, and the presence of human immunodeficiency virus or hepatitis C virus affect the experience of our participants in different ways. Findings are used to bring insights on research, clinical practice, and psychosocial support.
journal_name
Int J Qual Stud Health Well-beingauthors
Palareti L,Potì S,Cassis F,Emiliani F,Matino D,Iorio Adoi
10.3402/qhw.v10.28915subject
Has Abstractpub_date
2015-11-16 00:00:00pages
28915eissn
1748-2623issn
1748-2631pii
28915journal_volume
10pub_type
杂志文章abstract::Purpose: This article aims to explore counsellor experiences using an idiographic assessment procedure implemented in adolescent mental health services. The procedure, Assert, is based on asking the adolescents the question "What matters to you?" to define important topics to address in treatment.Methods: Focus groups...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2020.1763741
更新日期:2020-12-01 00:00:00
abstract::This article focuses on Danish patients' experience of autonomy and its interplay with dignity and integrity in their meeting with health professionals. The aim is to chart the meanings and implications of autonomy for persons whose illness places them in a vulnerable life situation. The interplay between autonomy and...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v6i2.6045
更新日期:2011-01-01 00:00:00
abstract:BACKGROUND:Early labour is the very first phase of the labour process and is considered to be a period of time when no professional attendance is needed. However there is a high frequency of women who seek care at the delivery wards during this phase. When a woman is admitted to the delivery ward, one role for midwives...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v11.30230
更新日期:2016-05-10 00:00:00
abstract::The aim of this paper is to discuss how everyday life changes for the family in the event of chronic illness or disability. It changes physically due to loss of body function and socially due to time and other constraints related to treatment or lack of mobility. Equally important, there is a psychological impact due ...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v6i2.7206
更新日期:2011-01-01 00:00:00
abstract::In this article, we identify some worrying problems in the contemporary practice of qualitative research, such as the confusion regarding content and meaning in content analysis, the frequent use of standardized methods that avoids philosophy, as well as the description/interpretation dichotomy in empirical research. ...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2019.1598723
更新日期:2019-12-01 00:00:00
abstract::Purpose: This study explored whether the holistic theory of salutogenesis may be a suitable theoretical framework for the Clubhouse model of psychosocial rehabilitation, a pioneer among psychosocial rehabilitation programmes.Methods: A systematic examination of elements of the Clubhouse model, as prescribed by the Clu...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2020.1748942
更新日期:2020-12-01 00:00:00
abstract:INTRODUCTION:The negative impact of paediatric cancer on parents is well known and is even greater when intensive treatments are used. This study aimed to describe how couples whose child has received a transplant for the treatment of leukaemia view conjugal resilience and to evaluate the role of we-ness as a precursor...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v11.32423
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abstract::Research-based descriptions of the contents of the habilitation nursing of children with developmental disabilities are lacking. The objective of this qualitative study was to describe the habilitation nursing of children with developmental disabilities in a Finnish children's neurological ward. In addition, the purpo...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v9.23106
更新日期:2014-03-21 00:00:00
abstract::Purpose: Self-reliance and social participation are strongly promoted by social policy. Both concepts are linked to the concept of vulnerability, for people who do not meet these standards are labelled "vulnerable people". In this paper, the insider's perspective takes central stage by seeking to explore what it means...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2020.1863598
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abstract:BACKGROUND:As Norway moves toward the provision of home-based crisis response, knowledge is needed about understandings of mental health crisis and effective ways of addressing crises within the home. OBJECTIVE:To elicit and learn from service users' experiences about the subjective meanings of crisis and what kind of...
journal_title:International journal of qualitative studies on health and well-being
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abstract::An overemphasis on clinical trials and behavior change models has narrowed the knowledge base that can be used to design interventions. The overarching point is that the process of overanalyzing variables is impeding the process of gaining insight into the everyday experiences that shape how people define health and s...
journal_title:International journal of qualitative studies on health and well-being
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abstract::There is a demand for interventions aimed at adolescent girls with psychosomatic problems. In 2013, positive results were reported from a dance intervention programme addressing girls with internalizing problems. The research team behind the intervention immediately received requests from municipalities and county cou...
journal_title:International journal of qualitative studies on health and well-being
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doi:10.1080/17482631.2018.1438697
更新日期:2018-12-01 00:00:00
abstract::This article considers the question of how to produce ecologically valid assessments of music's role as a health technology. To address this question, I consider critically some of the standard quantitative instruments used to assess well-being and quality of life. I suggest that these instruments do not lend themselv...
journal_title:International journal of qualitative studies on health and well-being
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doi:10.3402/qhw.v8i0.20611
更新日期:2013-08-07 00:00:00
abstract::Patients experience extreme difficulty when facing an intractable genetic disease. Herein, we examine the experiences of patients with Duchenne muscular dystrophy in facing and learning about their disease. A total of seven patients with Duchenne muscular dystrophy (age range: 20-48) participated. We conducted in-dept...
journal_title:International journal of qualitative studies on health and well-being
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doi:10.3402/qhw.v11.32045
更新日期:2016-10-05 00:00:00
abstract::Registered nurses (RNs) working in homecare encounter severely ill and palliative patients whose expressions may cause ethical challenges and influence their daily work. The aim of this qualitative study was to illuminate and interpret the meaning of nurses' lived experiences when meeting these patients. Narrative int...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v8i0.21880
更新日期:2013-10-17 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v10.26590
更新日期:2015-02-19 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v7i0.19613
更新日期:2012-12-13 00:00:00
abstract::Being able to continue living in their own home as long as possible is the general preference for many older people, and this is also in line with the public policy in the Nordic countries. The aim of this study was to elucidate the meaning of self-care and health for perception of life situation and identity among si...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v7i0.18456
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abstract::Hip fractures are amongst the leading causes of admission to an orthopaedic ward. Systematized pathways with reduced admission time have become increasingly common as an essential tool for quality development and to improve efficiency in the hospital setting. The aim of this study was to clarify if the patients feel ...
journal_title:International journal of qualitative studies on health and well-being
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doi:10.1080/17482631.2017.1307061
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journal_title:International journal of qualitative studies on health and well-being
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doi:10.3402/qhw.v11.30193
更新日期:2016-03-31 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
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journal_title:International journal of qualitative studies on health and well-being
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doi:10.3402/qhw.v8i0.20758
更新日期:2013-05-23 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2019.1620551
更新日期:2019-12-01 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v7i0.9510
更新日期:2012-01-01 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2019.1648945
更新日期:2019-12-01 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.1080/17482631.2018.1549920
更新日期:2018-12-01 00:00:00
abstract:BACKGROUND:Telenursing is an expanding service in most Western societies. Sweden is a front-line country, with all of its 21 counties connected to Swedish Healthcare Direct (SHD) 1177. The intention of the service is twofold: to make health care more efficient, while also making it more accessible and safe for patients...
journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v9.24255
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journal_title:International journal of qualitative studies on health and well-being
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v6i3.7084
更新日期:2011-01-01 00:00:00
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journal_title:International journal of qualitative studies on health and well-being
pub_type: 杂志文章
doi:10.3402/qhw.v6i2.7118
更新日期:2011-01-01 00:00:00