Exploring the impact on young people who are caring and grieving for a parent with motor neurone disease

Background: Motor Neurone Disease (MND) is a terminal neurological disease. Little attention has been paid in the literature to investigating the experiences of children and young people who provide care for a parent with the disease. Aim: To explore how providing care for a parent with MND impacts upon a young person’s life. Sample: A purposive sample of seven young people who were bereaved or currently providing care for a parent with MND. Methods: A qualitative methodology with informal semi-structured interviews. Results: Five key themes were identified; initial MND diagnosis, changing family roles, implications upon education, implications upon social life and positive outcomes. Conclusion: The study suggests that young carers for a parent with MND experience substantial challenges in addition to some positive outcomes.