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Social support and resilience in persons with severe haemophilia: An interpretative phenomenological analysis

The result's identifiers

  • Result code in IS VaVaI

    <a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F68081740%3A_____%2F20%3A00525220" target="_blank" >RIV/68081740:_____/20:00525220 - isvavai.cz</a>

  • Result on the web

    <a href="https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/hae.13999" target="_blank" >https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/hae.13999</a>

  • DOI - Digital Object Identifier

    <a href="http://dx.doi.org/10.1111/hae.13999" target="_blank" >10.1111/hae.13999</a>

Alternative languages

  • Result language

    angličtina

  • Original language name

    Social support and resilience in persons with severe haemophilia: An interpretative phenomenological analysis

  • Original language description

    Introduction Haemophilia is a hereditary haemorrhagic disorder characterized by deficiency or dysfunction of coagulation factors. Recurrent joint and muscle bleeds lead to progressive musculoskeletal damage. Haemophilia affects patients physically but also socially and psychologically. Traumatic experiences, chronic stress and illnesses can lead to mental disorders, but many persons with haemophilia maintain a highly positive outlook. Aim To explore qualitatively which coping mechanisms persons with haemophilia use and in what way they help them to live with their diagnosis. Methods We recruited five adults with haemophilia and conducted semi-structured face-to-face interviews. Transcripts were analysed using interpretative phenomenological analysis (IPA). Results Two core themes emerged from the analysis: social support as an external factor and resilience as an internal factor of coping with the disease. Persons with haemophilia usually need help with health-related complications, and this affects the social support they require. Their wider support network tends to involve family and friends but also healthcare professionals and other specialists. This network provides practical help but also functions as an important psychological protective factor. An unexpected finding was that persons with haemophilia want not only to receive support but are also keen to offer support to others. Conclusion These findings can help identify persons who provide most support to people suffering from haemophilia. Haemophilic centres should include in their teams psychologists and social workers and offer individual and group therapy to their clients, group meetings for friends and families of persons with haemophilia, provide learning resources to teachers aiming to incorporate children with haemophilia in their peer group, and organize Balint groups for physicians, psychologists and other healthcare professionals.

  • Czech name

  • Czech description

Classification

  • Type

    J<sub>imp</sub> - Article in a specialist periodical, which is included in the Web of Science database

  • CEP classification

  • OECD FORD branch

    50101 - Psychology (including human - machine relations)

Result continuities

  • Project

  • Continuities

    I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Others

  • Publication year

    2020

  • Confidentiality

    S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Data specific for result type

  • Name of the periodical

    HAEMOPHILIA

  • ISSN

    1365-2516

  • e-ISSN

  • Volume of the periodical

    26

  • Issue of the periodical within the volume

    3

  • Country of publishing house

    US - UNITED STATES

  • Number of pages

    7

  • Pages from-to

    "E74"-"E80"

  • UT code for WoS article

    000525836000001

  • EID of the result in the Scopus database

    2-s2.0-85083385453