title: Perceptions of Men With Moderate to Severe Hemophilia Regarding the Management of Their Chronic Disorder and Utilization of Community-Based Support.
abstract: Hemophilia is a genetic bleeding disorder that almost exclusively affects men. There is a nationwide network of nonprofit organizations providing support to men with hemophilia, which are affiliated with localized agencies that serve affected individuals within specific regions of the country. This community-based study was implemented in response to a local Utah agency's concern that men with hemophilia may be disengaged from and underserved by their local support network. The goal of the study was to gain a better understanding of the (a) unique challenges, (b) adaptations, and (c) physical, financial, psychological, and social needs of adult men with moderate to severe hemophilia from the local community. Over a period of 9 months, verbal qualitative interviews were conducted with 10 affected individuals, and written interviews were obtained from 3 additional participants. Using a grounded-theory approach, six themes were identified, based on men's commentary from interviews, across a spectrum of physical, social, communal, personal, medical, and vocational dimensions. Resilience theory, which explores internal resources that assist in coping with adverse situations, was used as a framework for interpreting research results. Findings indicate that men value the array of educational, social, and medical services that are available to them but choose to manage their hemophilia independently from the community and access support according to their individual needs. Understanding this dynamic may be helpful in developing services that are more specifically tailored to the physical and psychosocial needs of adult men with hemophilia and, potentially, men with other chronic health disorders.
authors.affiliation: University of Utah, Salt lake City, UT, USA erikrolstad@gmail.com.
authors.forename: Erik B
authors.initials: EB
authors.lastname: Rolstad
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000367:Age Factors; D002908:Chronic Disease; D015331:Cohort Studies; D003153:Community Health Services / Q000706:statistics & numerical data; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006467:Hemophilia A / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D011788:Quality of Life; D018570:Risk Assessment; D012720:Severity of Illness Index; D012938:Social Perception; D014589:Utah; D055815:Young Adult
keywords: community-based research; genetic disorders; hemophilia; men’s health; qualitative research