Le vécu familial des enfants atteints du cancer : une étude qualitative de la perception par les enfants de la dynamique familiale

Abstract

The research focuses on the family experience of children suffering from cancer. Despite considerable improvements these recent years and whatever are the prognostic and diagnostic, childhood cancers remains an ordeal that challenges all children's landmarks and previously established family balance. In the need of facing to the traumatic event, status and role of each family member are reorganized. Previous studies have focused mainly on parental stress and adaptation. Despite that developmental theories and family approaches regard children as active parts of their family system with unique representations, surprisingly the child's point of view received very little attention. Consistent with family system theories and ecological developmental Bronfenbrenner's framework, this study examines specifically to how children with cancer perceive their family system and its changes since the announcement of the disease. Five 7- to 9.5-year-old boys participated in this study. All are hospitalized in a long-time pediatric onco-hematology service. Three research tools aimed to assess the family dynamic (1) the Systemic Analysis of Group Affiliation (SAGA) – a test tridimensional test largely used in systemic therapy in line with Minuchin's theory. It is a floating object with a circular checkerboard, fifteen 10-cm wood non-commercial figurines representing diverse family members including two sick children as well as yellow or blue token, which allow assessing the power and influences of each member along the child's perception. Children are invited to choose as much as figurines they want to depict their family, to place them on the checkerboard according to their proximity and give to each figurine none to several token in function of their influence within the family circle. Two indices are calculated: cohesion and hierarchy. (2) Family drawing along with Corman's procedure combined with the modern attachment assessing approach (3) a semi-directed interview. Data analyses are quantitative as well as qualitative in line with the triangulation guideline. Findings indicate that the three information sources are complementary, but the SAGA is a playful and sensitive tool that captures more accurately the child's perception of changes within the family circle. Results of SAGA show that children perceive moves in both cohesion and hierarchy since the announcement of the disease. Concerning cohesion, children perceive an increased closeness with their mother and grandparents, a decreased one with siblings and a stable but low one with father. Concerning hierarchy, they perceive a reversal of roles with an increase of their own power and a decrease for both parents and siblings. Family drawings enlighten a diversity of attachment patterns consistent with personal emotional history of each child. But they are not sensitive to moves related to the disease. Interviews have been useful to confirm all already collected information but do not provide any crucial new one. Discussion considered the importance to take into account the children's point of view on their family dynamic and the impact of their disease on family members in the care management. Such approach will allow sensitive empowerment care practices and reinstate to children their child status and confirm them as real actors within the family circle. Discussion ponders over the interest and accurateness of the three assessing tools.