The impact of parental neurological illness on adolescent and adult children: quality of life, psychosocial factors and relationship with parent well-being

Background: The onset of a chronic neurological condition can have a serious impact on the individual's quality of life (QoL). Literature on how this affects the individual's children is sparse, and only a preliminary measurement tool, the Parental Illness Impact Scale (PUS), currently exists to measure this.;Aims: Further development and validation of the PUS, and to assess the QoL and psychosocial well-being of adolescent and adult children whose parent has either a chronic or acute neurological condition, and make comparisons across conditions.;Methods: Following an extensive pre-testing programme, questionnaire batteries including a revised version of the PUS and instruments measuring QoL and psychosocial variables were postally administered to 438 family members where one parent had a diagnosis of Parkinson's disease (PD), Multiple Sclerosis (MS) or stroke. Responses were received from 331 participants (76%). Of these 171 were adolescent and adult children (age range 11-48), 91 were the affected parent, and 69 the non-affected parent.;Results: Psychometric analysis shows the revised PIIS-R to have good construct, concurrent and discriminant validity. Internal consistency (Cronbach's Alpha .92) and test-retest reliability was high. The impact of parental neurological illness was highest in children of stroke patients, and lowest in children of people with PD. Levels of self-reported depression were significantly raised in all three groups. Correlations between child QoL and parental well-being suggest that the emotional manifestations of MS significantly affect children's QoL.;Conclusion: The PIIS-R is a scientifically robust measurement tool with which to assess the impact of parental illness. Both chronic and acute parental neurological illness has an impact on children's QoL and psychosocial well-being, and this needs to be recognised by service providers and in clinical guidelines. The development of effective interventions, information resources, and evidence-based guidelines, will require longitudinal study