Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder

Abstract

We describe the case of a 37-year-old woman with autism spectrum disorder (ASD) who lived with a mother with end-stage breast cancer and a visually impaired father. She was the main caregiver for her mother, who was receiving home-based palliative care. The caregiver needed training on communication and task management so that she could manage the communication with home care staff and perform more house chores. It was also necessary to share information with home care staff about ASD and how to treat her with understanding and respect. Although most support for people with ASD focuses on schools and workplaces, to offer successful end-of-life care at home, medical and home staff need to understand and communicate well with people with ASD and provide multiple types of support. Research, guidebooks, and visuals about main caregivers who have ASD and improving the inclusivity among staff members are necessary for providing successful home care and meeting caregivers' and patients' needs and expectations.

Keywords

• autism spectrum disorder
• communication supports
• family caregiver
• home care services
• interprofessional team
• palliative care