Long-term dyadic adjustment of parents of children with acute lymphoblastic leukemia : couples’ experiences from treatment completion to survivorship

Survival rates for pediatric patients with acute lymphoblastic leukemia (ALL) have gradually improved over time, with the vast majority of children diagnosed with this chronic disease surviving. Although this is encouraging news for the patient and his family, being diagnosed and treated for this disease in childhood still requires considerable adjustment on the part of the sick child and the family, especially for the parents. Following their child’s diagnosis, parents often take on additional responsibilities to care for the sick child and these responsibilities go beyond their pre-existing parental responsibilities. Such demands can be very cumbersome for parents at individual and relational levels. Several empirical studies and reviews have focused on the psychological adjustment of parents to pediatric cancer, but only recently has the emphasis been placed on the impact of pediatric cancer on parents’ relationships. Although these studies were fundamental in deepening our understanding of couples' functioning, they mainly used individual approaches for their analysis and focused on short-term adjustment experiences either shortly after diagnosis or when the child is still being treated. There is still little data on the long-term adjustment of couples. The main goal of this thesis is to propose a dyadic approach to understand the long-term psychological and relational adjustment experiences of parents of children with acute lymphoblastic leukemia (ALL).  The first article served as an initial test of the selected dyadic approach, the Actor-Partner Interdependence Model, with a longitudinal cohort of parents whose child was diagnosed and treated for ALL. In particular, this article examined whether the marital adjustment of partners two years after their child’s diagnosis could be predicted by partners’ perceived mood states and their perception of family functioning at the time of diagnosis. Forty-seven couples completed self-assessment questionnaires to assess these areas at the time of diagnosis (parental moods, family functioning and initial marital adjustment) and two years later (marital adjustment). Mothers’ marital adjustment at the end of their child’s ALL treatments (two years after diagnosis) was associated with their own perceptions of family support, role conflicts and role overload at the time of diagnosis. Fathers’ marital adjustment at the end of treatment was associated with their own role conflict, role ambiguity and fatigue at the time of diagnosis, as well as the partners' perception of role conflict at the time of the diagnosis. Based on the results and experiences of this first study dyadic and extending our analysis to the survival period, our second article examined the associations between long-term adjustment of couples and memories of past relationship dynamics with their partner. A follow-up cohort of 103 couple of childhood ALL survivors were asked to think back to when her child was treated and remember the nature of the relationship changes (negative change, no change, positive change) occurring on specific relational dimensions, such as intimacy or sexuality. They were also asked to describe their current psychological well-being and relationship functioning. The results show that the partners within couples tend to agree on the nature of relationship changes that occurred after their child’s diagnosis. Mothers’ describing stronger current relationship satisfaction was associated with their own perception of positive changes in their relationship, whereas fathers’ stronger interpersonal relationship was associated with their partner’s perception of positive relationship changes. Mothers’ current psychological distress was associated with their own perception of relationship changes and fathers’ current psychological distress was associated with both their own and their partner’s perceptions of relationship changes. These results suggest that the psychological and relational adjustment of mothers of children with ALL is an individual process, while the adjustment of fathers is a mostly interdependent process, hence supporting the necessity of using a dyadic approach to understand these couples' adjustment. In order to foster both partners' adjustment, clinicians should focus on addressing each partner's needs, especially those of mothers.

Keyphrases: Parents, Couples, Pediatric leukemia, Distress, Relationship, Adjustment, Dyad, Post treatment, Survivorship, Parents, Couples, Relation, Dyade