Living with a Rare Chronic Illness
A Phenomenological, Systemic Examination of Hemophilia Complicated by an Inhibitor
Bibliographic Data
| ID | 21476096 |
|---|---|
| Authors | W David Robinson (0000-0002-1302-6512, Utah State University, corresponding author), Adam C Jones (0000-0002-1752-157X, Texas Woman's University), Douglas P McPhee (0000-0001-5776-5977, Texas Tech University) |
| Year | 2020 |
| Volume | 48 |
| Issue | 3 |
| Pages | 250-270 |
| Publication date | 2020-05-26 |
| Open Access | No |
| Type | ARTICLE |
| Venue | American Journal of Family Therapy (JOURNAL) |
| Journal identifiers | ISSN: 0192-6187 • E-ISSN: 1521-0383 |
| Publisher | Informa UK Limited (PUBLISHER • GB) |
| DOI | 10.1080/01926187.2019.1708831 |
| OpenAlex | W3005360556 |
| Language | EN |
| References cited | 37 |
Up to 20% of individuals with hemophilia experience the added complication of an inhibitor. An inhibitor results in severe bleeds, joint damage, impaired mobility, and even death. We conducted a focus group with eight individuals affected by inhibitors (three patients and five caregivers). Data were analyzed using the immersion/crystallization method. The following themes emerged: (a) fear and anxiety within the family, (b) social isolation of the patient, (c) unique impacts on caregivers and siblings, and (d) desired changes in treatment. Similar experiences may be common across comparable disorders that are incapacitating, acute, and relapsing in nature
Anxiety · Complication · Psychiatry · Social isolation · Clinical Psychology · Hemophilia Treatment and Research · Medicine · Psychology · Internal Medicine
| Highly cited | No |
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