Illness perceptions and parental predictors of adherence to treatment in young people with haemophilia

Abstract

Background: Hemophilia can be managed with a lifelong treatment (prophylaxis/on-demand) and appropriate physical activity. Throughout adolescence, adherence reduces remarkably. According to the self-regulation model of Leventhal and colleagues, illness perceptions greatly influence health behaviours and adaptation to illness. Assessing illness perceptions while young patients gain more autonomy and how parent characteristics can affect their child’s adaptation is necessary to build interventions. Objectives: (1) Identify illness perceptions of children (2) Determine the accuracy of the parental estimate of those perceptions (3) Investigate if parental characteristics: parental distress and parenting sense of competence may predict accuracy of parental estimates and adherence Methods: The Illness Perception Questionnaire and Veritas-Pro/PRN assessing adherence were completed by 24 hemophilia patients, aged 6-18, receiving care at Sainte-Justine UHC in Montreal, Canada. Parents completed the same questionnaires in addition to the Parenting Sense of Competence scale and The Parenting Stress Index-short form. Proximity between children-parent answers was assessed with correlations, t-tests and ICCs. Parental characteristics were correlated to measures of adherence and proximity. Findings: Preliminary analyses suggest that consequences of illness, timeline, concerns and emotional response are more threatening perceptions of illness. Parent-child responses were minimally correlated overall, except for treatment control and identity (r >.42, p<.05). Adherence was higher when parental distress and parental satisfaction were high (r=0.616, p<.01; r=.433, p<.05). Discussion: Adherence behaviours can be stressful to parents. Interventions could focus on this and on promoting better communication between parents and their child on illness perceptions in order to foster a more adapted view of illness.