Integrating carer’s voice into a medical humanities curriculum: Teaching holistic care and autism-friendly patient experience through the lens of parents of children living with ASD

Abstract

Background: It has been documented that carers of patients with mental health conditions have heightened risks of depression and psychological distress. Thus, it is important that medical students are trained from early on to be aware of psychological needs of carers. The move in current teaching practices towards use of carers as teacher in psychiatric education is also shown to have obvious benefits including deeper learning for students and a sense of empowerment for carers. Objectives: By the end of a structured teaching session delivered by carers including family members of persons living with ASD, medical students would be able to (i) identify stressors in caregiving, (ii) demonstrate empathetic understanding of the lived experience of carers, and (iii) reflect upon humanistic approaches in interacting with carers in future practice. Methods: As part of a core medical humanities curriculum at HKU, third-year and fourth-year MBBS students received a structured face-to-face workshop in 2017-18 and 2019-20 respectively. Each session comprised a 30-min introduction on the burden of care, a 10-min sharing from psychiatrist on signs and symptoms of ASD, a 40-min sharing by family members of persons living with ASD, followed by a 50-min Q&A in small groups. At end of class, students each produced a postcard addressing their understanding (or concerns) about the burden of care, which were graded by carers. Observations: 187 third-year and 34 fourth-year MBBS students participated in the activity and completed evaluation surveys after randomly selected sessions. Students found strong relevance to their personal development as a doctor (mean score of 2.85 out of 3 on a 4-point Likert scale reported in both cohorts). Students were inspired by sincere personal narratives from multiple perspectives (e.g. husband and wife) in the same family raising an autistic child. Conclusion: By engaging carer’s voice in a medical humanities curriculum of a medical school, students can be more attuned to the psychological wellbeing of this important group of health stakeholders.