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Participants' bias in disability research on Family Quality of Life during the 0-6 years stage
  • Carmen Francisco Mora,
Carmen Francisco Mora
Universidad Ramón Llull
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University of Cantabria

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Ramon Llull University
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Background: A recent systematic review on state of art of Family Quality of Life (FQoL) in early care and disability identified a limitation in some studies, where data were primarily collected from mothers. The present study aimed to investigate whether there is a bias in participant selection in empirical studies focusing on the quality of life of families with children with disabilities aged 0 to 6 years. Methods: A systematic review of the scientific literature was conducted in the Scopus, Web of Science, and Eric databases. A total of 72 studies published between January 2000 and July 2022 were included. Results: 66 studies relying on the “traditional approach” of collecting information from only one informant per family unit. Of the remaining seven studies, only one adopted a systemic approach in which multiple family members are represented. Conclusions: In most of the studies there is a gap between the systemic theoretical framework and the definition of FQoL on the one hand, and the selection of participants on the other hand. Given the dynamic and collective nature of the construct, the application of a systemic approach is necessary. Only one study indicated an epistemological limitation regarding the validity of the conceptualization.