Participants’ Bias in Disability Research on Family Quality of Life During the 0-6 Years Stage

Abstract

Background: Over the past two decades, various research teams have designed and applied instruments to measure the quality of life of families with a member who has a disability. A recent systematic review on the state of art of Family Quality of Life in early care identified that many of these studies collected data only from the mothers. The present study aimed to investigate whether there is a bias in participant selection in these types of studies. Method: A systematic review of the scientific literature was conducted in the 3 databases from the year 2000 to 2022. A total of 72 empirical studies have been identified. Results: The findings indicated that most studies examining the family quality of life were based on the information of a single informant per family unit. The profiles of participants according to the research objective is quite similar. In one third of studies the authors report that family members who participate cannot be represented by only mothers or one participant per household. Conclusions: Given the dynamic and collective nature of the construct, the application of a systemic approach is necessary.