Psychosocial adjustment in adolescents with a parent with multiple sclerosis

Abstract

Previous research has shown that children with a parent with a chronic medical condition may face psychosocial difficulties. This thesis presents a series of studies to explore how children adjust to their parents’ Multiple Sclerosis (MS).

Study 1: A systematic review of the literature showed a number of factors linked to children's adjustment and also that adolescents might be at increased risk of psychosocial problems compared to younger children with a parent with MS.

Study 2: Following the systematic review, a qualitative interview study, is presented, with 15 adolescents with a parent with MS which showed how adolescents view their increased responsibilities and also the importance of the parent without MS to provide practical and emotional support.

Study 3: Mixed methods were used in order to develop a questionnaire (Perceptions of Parental Illness Questionnaire, PPIQ) to measure adolescents’ beliefs about their parents’ MS. To assess the psychometric properties of the newly developed questionnaire, 104 adolescents completed the PPIQ together with standardised measures of emotional and behavioural adjustment and illness-related impairment. The PPIQ appeared to be valid and reliable.

Study 4: Finally, the data of the questionnaire development study was used in a longitudinal design study in which 56 parents with MS, 40 partners without MS and 75 adolescent children were included. The findings showed that parents’ anxiety and depression symptoms, parents' emotional expression and adolescents' views about MS were associated with adolescents' adjustment. MS characteristics (e.g. MS severity, type, time since diagnosis, relapses) and adolescents' reports on parent-adolescent communication were not associated with their adjustment.

Family environment and adolescents’ illness beliefs are important factors to be incorporated in future interventions to support adolescents’ adjustment to parental MS.

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