Experiencing illness as a crisis by the caregivers of individuals with Prader-Willi Syndrome

BACKGROUND: The behavioural phenotype of Prader-Willi Syndrome (PWS) implies a specific emotional and social-interactive burden for the caregivers of the individuals with PWS. The aim of the study was to perform an in-depth exploratory analysis of experiences of the familial caregivers of individuals with PWS. METHOD: The study was carried out using a sociological methodology of the grounded theory (qualitative research). A purposively selected sample of 20 familial caregivers of children/adults with PWS was invited to take part in individual, semi-structured in-depth interviews which included questions pertaining to coping with problems arising from the condition, including its impact on social interactions, as well as to the meanings of PWS. RESULTS: The core category emerging from our analysis emphasized “experiencing PWS as a crisis”. The phases in the process of experiencing PWS were specified, each of which is characterised by specific cognitive, emotional and social problems, implying relevant requirements in the care of individuals with PWS. I. Crisis in response to the diagnosis; II. Crisis in response to lack of control over the hunger of individuals with PWS; III. Crisis in response to the social milieu’s failure to understand the nature of the condition; IV. Crisis in response to attempts to plan the future of individuals with PWS. The specificity of the PWS caregiver’s experience is primarily determined by the need to reconstruct the entire family’s lifestyle. The experiences of caregivers of PWS persons, at the time when they were available for study, had the characteristics of crisis. Moreover the psychosocial consequences of PWS were not subject to normalization and attempts to attribute any meaningful existential sense to the PWS were ineffective in the time period under scrutiny. CONCLUSIONS: Identifying phases of the PWS experience process from the perspective of the caregivers of individuals with PWS may be used to profile interventions supporting PWS individuals’ families in a manner corresponding to the flow of the illness experience.