“I Just Learned by Observation and Trial and Error”: Exploration of Young Caregiver Training and Knowledge in Families Living with Rare Neurological Disorders

Background Caregiver skill training and support programs are traditionally offered to adult caregivers, leaving out the over 1 million children and youth who provide care (“young caregivers”). Skill building and support programs are critical to caregiver and patient well-being and can be informed by the knowledge of current caregiver skill and support acquisition. Objective Using data from three studies of neurological disorders, this paper provides initial data on how young caregivers acquire caregiver skills and training needed to inform young caregiver programs. Method Mixed method data drawn from three studies of young caregivers in neurological disorders, Huntington’s disease (HD) and amyotrophic lateral sclerosis (ALS). Results Youth (N = 96), ranged in age from 8 to 20, care for a family member with HD or ALS, and involved in tasks ranging from assistance with walking (76%), toileting (32%) and administering medications (37%). The majority (N = 59; 61%), received no training or guidance. When asked how they knew what to do, six main themes arose: (1) patient tells me what to do, (2) watching and observing, (3) common sense, (4) treating patient like child or self, (5) process of figuring it out, and (6) don’t know. Conclusion Young caregivers in neurological disorders engage in numerous caregiving tasks with little formal guidance, despite a desire for training and education by adults and professionals. Reliance on various skill methods and lack of formal guidance, points to the need for health care professionals to develop education and training programs targeting this isolated and underserved population, improving the well-being of both caregiver and care recipient.