Psychosocial intervention for children with narcolepsy:: Parents' expectations and perceived support

The study focuses on the parents of children who were affected by narcolepsy after a pandemic influenza and vaccination campaign in Finland. The main aim of the study was to clarify parents' expectations and perceived support from the intervention and to assess their need for additional support. The data were gathered using questionnaires. Fifty-eight parents answered the baseline questionnaire and 40 parents the final questionnaire. Parents' expectations of and perceived support from the intervention mainly related to peer support. The intervention offered an arena for sharing information and experiences and provided encouragement for coping in everyday life. Many expectations were not met, especially those concerning information about needed services, financial benefits and availability of local support. The results highlight that for persons with rare disorders and their families, an inpatient psychosocial intervention can offer an important arena to receive both informal and professionally led peer support. Comprehensive psychosocial and other support services are also needed in the community. Listening to parents' perspectives on the intervention and perceived support can help to establish multiform family-centred support for families with children affected by a rare chronic disabling condition.