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

Les taux de survie chez les patients pédiatriques atteints de leucémie lymphoblastique aiguë (LLA) se sont progressivement améliorés avec le temps, de sorte que la grande majorité des enfants diagnostiqués avec cette maladie chronique survivent. Bien que ce soit une nouvelle encourageante pour le patient et sa famille, être diagnostiqué et traité pour cette maladie dans l’enfance nécessite encore un ajustement considérable de la part de l'enfant malade et de la famille, en particulier chez les parents. À la suite du diagnostic de leur enfant, les parents prennent souvent des responsabilités supplémentaires pour s'occuper de l'enfant malade et ces responsabilités vont au-delà de leurs responsabilités parentales préexistantes. De telles exigences peuvent être très lourdes pour les parents au plan individuel et relationnel. Plusieurs études et revues empiriques ont porté sur l'adaptation psychologique des parents au cancer pédiatrique, mais seulement récemment, l'accent a été mis sur l'impact du cancer pédiatrique sur les relations des parents. Bien que ces études aient été fondamentales pour approfondir notre connaissance du fonctionnement des couples, elles ont principalement utilisé des approches individuelles pour leur analyse et ont été axées sur les expériences d'ajustement à court terme, peu après le diagnostic ou alors que l’enfant est encore en traitement. Il y a encore peu de données sur l'ajustement à long terme des couples. Le principal but de cette thèse est de proposer une approche dyadique pour comprendre les expériences psychologiques et d'ajustement relationnelle à long terme des parents d'enfants atteints de leucémie lymphoblastique aiguë (LLA). Le premier article a servi de test initial de l'approche dyadique sélectionnée, le modèle d'interdépendance acteur-partenaire, avec une cohorte longitudinale de parents dont l'enfant a été diagnostiqué et traité pour une leucémie lymphoblastique aiguë (LLA). En particulier, cet article visait à déterminer si l'ajustement conjugal des partenaires deux ans après le diagnostic de leur enfant pouvait être prédit par les états d'humeur perçus par les partenaires et leur perception du fonctionnement de leur famille au moment du diagnostic. Quarante-sept couples ont rempli des questionnaires d'auto-évaluation pour évaluer ces domaines au moment du diagnostic (états d'humeur des parents, le fonctionnement familial et l'ajustement conjugal initial) et deux ans plus tard (ajustement conjugal). L'ajustement conjugal des mères à la fin des traitements LLA de leurs enfants (deux ans après le diagnostic) a été associé à leur propre perception du soutien familial, des conflits de rôle et de la surcharge de rôle au moment du diagnostic. L'ajustement conjugal des pères à la fin du traitement a été associé à leur propre conflit de rôle, à leur ambigüité de rôle et à leur fatigue au moment du diagnostic, ainsi qu'à la perception par les partenaires du conflit de rôle au moment du diagnostic. S'appuyant sur les résultats et l’expérience de cette première étude dyadique et en étendant notre analyse à la période de survie, notre deuxième article visait à examiner les associations entre l'ajustement à long terme des couples et les souvenirs de la dynamique de relation passée avec leur partenaire. Une cohorte de suivi de 103 couples d'enfants ALL survivants a été invitée à réfléchir au moment où son enfant a été traité et à se rappeler la nature des changements de relation (changement négatif, sans changement, changement positif) sur des dimensions relationnelles spécifiques, comme l'intimité ou la sexualité. Ils ont également été invités à décrire leur bien-être psychologique actuel et leur fonctionnement en relation. Les résultats montrent que les partenaires au sein des couples ont eu tendance à être en accord sur la nature des changements dans les relations qui se sont produits suivant le diagnostic de leur enfant. Les mères décrivent qu’une meilleure satisfaction relationnelle actuelle a été associée à leur propre perception des changements positifs de la relation, alors que la meilleure relation relationnelle des pères était associée à la perception par les partenaires des changements de relation positifs. La détresse psychologique actuelle des mères était associée à leur propre perception des changements de relation et la détresse psychologique actuelle des pères était associée à la fois à leur propre et aux perceptions de leurs partenaires sur les changements de relation. Ces résultats suggèrent que l’ajustement psychologique et relationnel des mères de l’enfant avec leucémie est un processus individuel lorsque l’ajustement des pères est un processus surtout interdépendant, soutenant ainsi la nécessité d'utiliser une approche dyadique pour comprendre l'ajustement de ces couples. Afin de favoriser l'ajustement des deux partenaires, les cliniciens devraient se concentrer sur les besoins de chaque partenaire, en particulier ceux des mères.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

A 2‐year dyadic longitudinal study of mothers' and fathers' marital adjustment when caring for a child with cancer

Objective Studies examining interrelationships within parental couples confronted with pediatric cancer are scarce. This study explored dyadic longitudinal associations between both partners' family functioning and mood at diagnosis, and marital adjustment 2 years later. Method Parents of children (n = 47 couples) with acute lymphoblastic leukemia (ALL) completed the Family Well‐Being Assessment and Profile of Mood States‐Bipolar Form at diagnosis, and the Locke–Wallace Marital Adjustment Test 2 years post diagnosis. Multilevel linear models using the actor–partner interdependence model (APIM) and controlling for baseline marital adjustment were conducted to evaluate within subject and dyadic longitudinal effects. Results For mothers, better marital adjustment 2 years post diagnosis was associated with perception of greater family support and less role conflict and role overload at diagnosis. For fathers, better marital adjustment 2 years post‐diagnosis was associated with perception of less role conflict, greater role ambiguity, and being more tired at diagnosis, as well as their partner's perception of less role conflict at diagnosis. Conclusions These findings highlight the importance of considering both partners' perspectives in understanding marital adjustment across treatment phases in parents of children with ALL. Early interventions for couples should be tailored to meet each partner's needs in order to foster resilience within the couple

Cancer-related effects on relationships, long-term psychological status and relationship satisfaction in couples whose child was treated for leukemia: A PETALE study.

OBJECTIVES:Follow-up studies suggest that the psychosocial impact of pediatric cancer on parents often extends beyond the end of their child's cancer treatments, and parents can continue to experience both individual and relationship effects. In a long-term study of parents of children who were treated for acute lymphoblastic leukemia (ALL), we aimed to: 1) describe parents' adjustment (psychological distress, relationship satisfaction; 2) describe the perceived impact of cancer on couples' relationship, and; 3) identify to what extent the perceived impact of cancer on the couple is related to both parents' long-term adjustment. METHODS:Parents of childhood ALL survivors (n = 103 couples) were surveyed as part of a cohort recall (PETALE cohort). Both parents completed questionnaires exploring adjustment (Brief Symptom Inventory-18, Dyadic Adjustment Scale) and perceived impact of cancer on the relationship (Impact of Cancer on the Couple). Mothers' and fathers' scores were compared using MANOVAs. We also examined the degree to which a parent's perceived changes in relationship dynamics following their child's cancer were associated with their own current adjustment (actor effects), and their partner's current adjustment (partner effects) using the Actor-Partner Interdependence Model (APIM). RESULTS:Frequencies of current distress were normative in parents (mothers/fathers): general distress (6.8/7.8%), anxiety (5.8/6.8%), depression (2.9/6.8%), somatization (13.6/9.7%), and relationship distress (21.4/20.4%). Mothers and fathers typically agreed on their reported relationship satisfaction, and the perceived nature of relationship changes following the illness. Dyadic analyses indicated that whereas mothers' adjustment was related to their own perceived relationship changes, fathers' adjustment was primarily related to their partner's perceptions. CONCLUSION:In long-term stable couples, mothers may act as an influential bridge connecting the illness experiences of survivors and fathers. This could explain why mothers' perceptions of relationship changes were related to their partners' long-term adjustment, which was not the case for fathers