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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| Veröffentlicht in: | Haemophilia : the official journal of the World Federation of Hemophilia Jg. 25; H. 6; S. 988 - 995 |
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| Hauptverfasser: | , , , , , , |
| Format: | Journal Article |
| Sprache: | Englisch |
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England
Wiley Subscription Services, Inc
01.11.2019
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| ISSN: | 1351-8216, 1365-2516, 1365-2516 |
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| Abstract | 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. |
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| AbstractList | 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.INTRODUCTIONDistress 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.To identify qualitative features of haemophilia-related distress among affected adults to ultimately inform the creation of a measurement tool.AIMTo identify qualitative features of haemophilia-related distress among affected adults to ultimately inform the creation of a measurement tool.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.METHODSAdults 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.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.RESULTSHaemophilia-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.Features of haemophilia-related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.CONCLUSIONFeatures of haemophilia-related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia. 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. 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. To identify qualitative features of haemophilia-related distress among affected adults to ultimately inform the creation of a measurement tool. 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. 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. Features of haemophilia-related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia. IntroductionDistress 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.AimTo identify qualitative features of haemophilia‐related distress among affected adults to ultimately inform the creation of a measurement tool.MethodsAdults 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.ResultsHaemophilia‐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.ConclusionFeatures of haemophilia‐related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia. |
| Author | Barry, Vaughn Tatum, Katharine Taylor, Natalie Mattis, Shanna Whitten, Stephanie Lynch, Mary Ellen Kempton, Christine L. |
| Author_xml | – sequence: 1 givenname: Shanna orcidid: 0000-0001-5952-5512 surname: Mattis fullname: Mattis, Shanna email: slmatti@emory.edu organization: Emory University School of Medicine – sequence: 2 givenname: Vaughn orcidid: 0000-0002-8711-8268 surname: Barry fullname: Barry, Vaughn organization: Emory University School of Medicine – sequence: 3 givenname: Natalie surname: Taylor fullname: Taylor, Natalie organization: Emory University School of Medicine – sequence: 4 givenname: Mary Ellen surname: Lynch fullname: Lynch, Mary Ellen organization: Emory University School of Medicine – sequence: 5 givenname: Katharine surname: Tatum fullname: Tatum, Katharine organization: Emory University School of Medicine – sequence: 6 givenname: Stephanie surname: Whitten fullname: Whitten, Stephanie organization: Emory University School of Medicine – sequence: 7 givenname: Christine L. orcidid: 0000-0002-2391-2016 surname: Kempton fullname: Kempton, Christine L. organization: Emory University School of Medicine |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/31577383$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.1177/1049732316665344 10.1002/pbc.26167 10.1007/s10549-006-9447-x 10.1002/pon.796 10.1111/hae.12297 10.1017/S0033291702006074 10.1080/21683603.2016.1130532 10.2337/dc09-1238 10.1016/j.jdiacomp.2016.04.023 10.1007/s10865-013-9505-x 10.1016/j.jpsychores.2014.06.015 10.1111/hae.12104 10.1016/j.jdiacomp.2015.01.012 10.2337/dc12-0181 10.1037/hea0000131 10.1016/j.appet.2012.08.010 10.2337/diacare.18.6.754 10.1046/j.1365-2648.2003.02938.x 10.3109/02770900903426989 10.2337/diacare.20.5.760 10.1080/13607863.2015.1031639 10.1016/j.bbi.2007.03.005 10.1111/bju.12209 10.1111/j.1365-2516.2011.02714.x 10.1111/j.1464-5491.2008.02533.x 10.1111/hae.12748 10.1037/0278-6133.22.6.638 10.1186/1472-6823-13-25 10.1016/S2213-8587(15)00135-7 10.1016/j.annepidem.2008.12.005 10.1111/dme.12781 |
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| Copyright | 2019 John Wiley & Sons Ltd 2019 John Wiley & Sons Ltd. |
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| ISSN | 1351-8216 1365-2516 |
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| Keywords | distress haemophilia disease qualitative adults interviews |
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| Notes | 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 content type line 14 content type line 23 |
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Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these... Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations,... IntroductionDistress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these... |
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| SubjectTerms | 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 |
| Title | Disease‐related distress among adults with haemophilia: A qualitative study |
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