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Living with a Rare Disease as a Family: A Co-Constructed Autoethnography from a Mother

Author

Listed:
  • Irene Damen

    (Department of Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, The Netherlands)

  • Alice Schippers

    (Department of Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, The Netherlands
    Stichting Disability Studies in Nederland, Bikkerspolder 14, 3453 NW Utrecht, The Netherlands)

  • Alistair Niemeijer

    (Department of Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, The Netherlands)

  • Tineke Abma

    (Department Public Health and Primary Care, Leiden University Medical Centre, Leiden University, Albinusdreef 2, 2333 ZA Leiden, The Netherlands
    Leyden Academy on Vitality and Ageing, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands)

Abstract

Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time.

Suggested Citation

  • Irene Damen & Alice Schippers & Alistair Niemeijer & Tineke Abma, 2022. "Living with a Rare Disease as a Family: A Co-Constructed Autoethnography from a Mother," Disabilities, MDPI, vol. 2(2), pages 1-17, June.
    • Handle: RePEc:gam:jdisab:v:2:y:2022:i:2:p:25-364:d:837454
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    References listed on IDEAS

    as
    1. Marjorie L. Devault, 1999. "Comfort and Struggle: Emotion Work in Family Life," The ANNALS of the American Academy of Political and Social Science, , vol. 561(1), pages 52-63, January.
    2. Carmen Francisco Mora & Alba Ibáñez & Anna Balcells-Balcells, 2020. "State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review," IJERPH, MDPI, vol. 17(19), pages 1-16, October.
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