Skill, confidence and support: conceptual elements of a child/youth caregiver training program in amyotrophic lateral sclerosis – the YCare protocol

Abstract

Aim: Pilot study of a novel caregiving training and support intervention for children and youth <19 years, who provide care for person living with amyotrophic lateral sclerosis. Materials & methods: Youth (n = 19) between the ages of 8–19 years, participated in skills training and support program (basic care, feeding/communication, assistive devices and social support). Results: Participants reported significant increase in confidence in tasks, including communication systems and respiratory equipment. Participants identified goal setting and creating behaviors to reach those goals. Benefits of training included that the day changed their perceptions of care and meeting ‘like’ peers. Conclusion: Results of the pilot YCare intervention underscores the need to assess how young caregivers feel and respond to new tasks when receiving support from developmentally similar peers.