A balancing act : work life and childcare among parents of children with cancer

Abstract: Aim: The overall aim of this thesis was to investigate the socioeconomic consequences for parents of children with cancer in Sweden. The specific aims were to increase the knowledge of (I) risk of sick leave, (II) division of childcare leave, (III) balancing work and family roles, and (IV) facilitators and barriers to return to work and meet financial needs. Methods: The thesis comprises four studies. The first two studies were based on quantitative methods. The data were derived from a sample of 3,626 parents of 1,899 children who were diagnosed with cancer during 2004-2009, and a matched reference cohort of 34,874 parents from the general population. National registry data were utilized to analyze sick leave and childcare leave longitudinally. Logistic, negative binomial, beta, and linear regression analyses were conducted. The final two studies were based on qualitative methods. Nine focus group interviews with 22 mothers and 11 fathers of children with cancer were conducted. The interviews were audio-recorded and transcribed verbatim. The data were analyzed using inductive content analysis in study III, and deductive content analysis in study IV. Results: In studies I and II, we found that parents of children with cancer were on sick leave and childcare leave for statistically significantly more days than reference parents from the year of the child’s diagnosis and up to six years after diagnosis. Bereaved parents were at particularly high risk of sick leave. Mothers were overall on sick leave and childcare leave for more days than fathers. The division of childcare leave within a parental couple (i.e. fathers’ share of the couple’s total childcare leave days) was not substantially associated with the division of income within the couple (i.e. fathers’ share of the couple’s total income). Moreover, parents’ income development was not affected by extent of childcare leave. In study III, we found that parents experienced changed perspectives and priorities after a child’s cancer diagnosis. Their ability to balance work and parent roles were affected by context and conditions regarding work, economy and gender roles. Furthermore, parents described a long-term unbalance of roles. In study IV, we found that facilitators for return to work were flexibility and understanding from employers and social services, while barriers were pressures to return without consideration of the consequences. Facilitators to meet financial needs were available public, private and employer support, while barriers were a lack of organized and efficient support from employers and social services. Conclusions: Parents experience considerable work disruptions for several years after a child’s cancer diagnosis, due to both the child’s increased care demands, as well as their own ill health. Parents ability to balance work and family was affected for a long time, while the understanding and support from employers and social services declined over time. For parents to be able to meet financial needs and return to work, more coordinated and efficient support is needed from healthcare and social services, as well as flexibility from employers.