Disease‐related distress among adults with haemophilia: A qualitative study

Introduction Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease‐specific distress is associated with health outcomes. Haemophilia‐related distress is less understood. Aim To identify qualit...

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Bibliographic Details
Published in:Haemophilia : the official journal of the World Federation of Hemophilia Vol. 25; no. 6; pp. 988 - 995
Main Authors: Mattis, Shanna, Barry, Vaughn, Taylor, Natalie, Lynch, Mary Ellen, Tatum, Katharine, Whitten, Stephanie, Kempton, Christine L.
Format: Journal Article
Language:English
Published: England Wiley Subscription Services, Inc 01.11.2019
Subjects:
Adolescent
Adult
adults
Aging
Chronic illnesses
Cohort Studies
Diabetes mellitus
Disease
distress
Female
haemophilia
Hemophilia
Hemophilia A - complications
Hemophilia A - psychology
Hemophilia B - complications
Hemophilia B - psychology
Humans
interviews
Male
Middle Aged
qualitative
Qualitative Research
Stress, Psychological - complications
Stress, Psychological - epidemiology
Young Adult
distress
haemophilia
disease
qualitative
adults
interviews
ISSN:1351-8216, 1365-2516, 1365-2516
Online Access:Get full text
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Summary:Introduction Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease‐specific distress is associated with health outcomes. Haemophilia‐related distress is less understood. Aim To identify qualitative features of haemophilia‐related distress among affected adults to ultimately inform the creation of a measurement tool. Methods Adults with haemophilia A or B associated with a large haemophilia treatment centre in the south‐eastern U.S. were recruited to participate in this qualitative study. Fifteen participants completed semi‐structured telephone interviews. Interviews lasted 1‐2 hours and explored experiences of distress related to various aspects of haemophilia. Interviews were audio taped, transcribed and coded using NVIVO, software for organizing, managing and analysing qualitative data. Coding was deductive and inductive, and the analysis was thematic. Results Haemophilia‐related distress was broadly related to feelings of isolation and vulnerability which incorporated health system factors, physical functioning, caretaker roles and psychological considerations. Specific features associated with haemophilia‐related distress included lack of trust in the knowledge of haemophilia and care provided by staff in community healthcare settings, concerns about the future such as health insurance access and ageing/disability, long‐standing feelings of being different from others and feeling like an outsider, treatment burdens and fear of acute bleeds. Protective factors included supportive relationships with family, friends and haemophilia care teams through which participants received practical and emotional support. Conclusion Features of haemophilia‐related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.
Bibliography:The study was supported by an investigator‐initiated award from Novo Nordisk (CLK). CLK has received honorarium from Bayer Healthcare, Genentech, Octapharma, Spark Therapeutics, Grifols, and Pfizer for participation on Advisory Boards and research support from Novo Nordisk. All other authors report no conflicts of interest.
Funding Information
ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
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ISSN:1351-8216
1365-2516
1365-2516
DOI:10.1111/hae.13850