Quality versus Quantity? A time use study of father-mother pairs with a disabled preschool child

Abstract

Time use studies are an effective way of finding out more about individuals’ daily lives and when used with semi-structured interviews can provide a form of participant observation. Large multinational studies have been performed over the past 40 years providing comprehensive data on general populations, including couples with children. However, little is known about the daily lives of couples with children with complex disabilities, and whether there are differences in time use decisions and quality of life for this group of parents. Quantities of time spent on different activities can affect quality of life; the way activities are performed can affect their quality. This study considers these issues of quality versus quantity in the time use of parents. Aims and Objectives: 1) To explore the time use of parents with a young child with complex disabilities and compare this with the time use of similar parents with young children without any identified disabilities; 2) To explore what factors influence parents’ time use decisions, and relate these to quality of life and parental satisfaction and 3) To use this knowledge to guide service delivery.

Methodology and Methods: This is a critical ethnographic mixed methods study. Three group of parents participated: 1) Parents with a preschool child with complex health needs dependent on technology; 2) Parents with a healthy preschool child with autism and 3) Parents with a healthy preschool child without any identified disabilities. All parents completed the PedsQLTM Family Impact Module Survey followed by a specifically designed precoded time use diary for seven consecutive days. Parents in groups one and two were then interviewed to explore their feelings around time use and family life. Secondary analysis of the Multinational Time Use Survey (MTUS) data from the UK 2000/1 provided a further comparison data set. Results: Data are available on 28 couples and an additional 200 couples from the MTUS data. Significant differences in time use were found between the groups with regard to sleep, leisure, social contact, work, and quality of life measures with parents in groups one and two disadvantaged in these aspects compared to the parents in group three. Five main themes emerged from analysis of the interviews: ‘feeling trapped at home’; ‘twenty-four seven caring’; ‘trying to achieve a balance’; ‘discovering a whole new world’; and ‘evolving roles’ with ‘trust’ emerging as a unifying theme. Trust was found to provide the threads that linked parents in a complex web of relationships. The quality and quantity of these trust threads affected parents’ time use decisions and quality of life as highlighted by the reduced quality and quantity of sleep and leisure experienced. The interparental trust relationship varied between couples with different levels of trust defining ‘dictatorship’, ‘coalition’ and ‘democracy’ groups.
Conclusion: Quality and quantity of sleep and leisure time are reduced for parents with a disabled preschool child. This decreases opportunities for parents to ‘re-charge’ and hence can impact on parents’ health and wellbeing. Levels of trust between mothers and fathers influence parental time use and are an important determinant of parental quality of life.