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

Irene Damen, Alice Schippers, Alistair Niemeijer and Tineke Abma
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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
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

Disabilities, 2022, vol. 2, issue 2, 1-17

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.

Keywords: quality of life; family; care; autoethnography; family dynamics; neurofibromatosis; chronic disease; qualitative research; rare disease (search for similar items in EconPapers)
JEL-codes: I (search for similar items in EconPapers)
Date: 2022
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