On November 29th 2020, our guest expert panelists Hui-Chun Lo, in Taiwan, and Niluka Gunawardena, in Sri Lanka, shared with us their experiences with family systems approaches during the pandemic. Niluka is a Visiting Lecturer at the University of Kelaniya Department of Disability Studies & consultant to the AHEAD project at the University of Colombo, which is aimed at creating an accessible and equal learning environment for students with disabilities. Niluka currently serves on the Board of Women Enabled International & the Programme Advisory Committee of the Asia Pacific Resource and Research Centre for Women. Hui-Chun is a postmodern counseling psychologist working at Mackay Memorial Hospital Counseling Center in Taipei, Taiwan. As an adjunct lecturer at Mackay Medical College & National Taiwan Normal University, he also teaches family therapy and the relationship between patients’ family system and medical system, which is a key area of his work. Since 2019, Hui-Chun has been a vice president of the Taiwan Counseling Psychologist Union.
Hui-Chun discussed the decline in recreational and leisurely travel to Taiwan during the pandemic, and thus the subsequent decrease in income for those who depend on tourism in the East of the country for their livelihood. This has meant, in his work, seeing families’ increasing difficulty in being able to pay for their children’s medical treatment. Hui-Chun discussed a challenging case of a single father struggling to take care of his young son with a terminal illness. The father travels several hours to Taipei by train from the East of Taiwan to get care for his son. He suffers from substance use issues, depression, and anxiety, which become relevant family systems issues for the health care team as they interact with the father, who is sole caretaker for his son and has no family in Taipei.
In addition, Taiwan’s Covid-19 restrictions allow for few people in the hospitals; nurses and health care staff thus give more care for the child. Hui-Chun discussed the importance of the biopsychosocial spiritual model in his work, and Hui-Chun then poignantly discussed how he and his team do their best to incorporate love and hope in their work with families, in addition to providing resources, psychoeducation, and advocacy for this family system. Mental health professionals are a crucial segment of the family’s care; their selfcare is critical and a key part of Hui-Chun’s analysis.
Turning to Sri Lanka, Niluka discussed the concept of care for family members with disabilities in the country. Niluka recently started a peer support group for caregivers; this hour is sometimes the only hour caregivers get for themselves. Niluka reported that disability of a child or family member is often blamed on mothers, or other female family members, in Sri Lanka. The attendees in her group, the majority of whom are mothers, report feeling very isolated and unsupported. The presence of a disability can be interpreted as “bad karma” or even a sin. Thus, mothers may experience shame, stigma, and denial. The social model of disability Niluka described explores the sociocultural barriers impacting care, and during this pandemic, some of these barriers require urgent attention.
For example, an ongoing concern exacerbated by the pandemic is the possible sexual abuse and exploitation of girls with disabilities. Some parents may resort to sterilization of their children to protect them from this risk. This then raises human rights concerns: How to protect people with disabilities without infringing on their rights? Since the pandemic, many families are facing financial difficulty; there has been a spike in use of alcoholism which has led to more violence especially for those with a disability. Those who are deaf or with hearing impairments are greatly impacted because sign language services are not currently available, and with people wearing masks, as they cannot lip read. Community responses to these challenges include student activists starting a campaign to create clear masks for the deaf, and more use of social media for advocacy.
As we have seen in previous webinars, families all over the world are facing numerous challenges, complicated by the effects of the ongoing Covid-19 pandemic. Niluka’s presentation highlighted the added stress for people with disabilities, which requires sensitization to thinking beyond able-bodied persons, and further, how to do so during a public health emergency. For example, persons with disabilities may depend on personal care assistants; thus hands-on work and touch by caregivers is not something that can be avoided. Additionally, for those who use wheelchairs, there are potential risks beyond the typical WASH (water and sanitation hygiene) protocols that are critical in a pandemic. Similarly, food insecurity becomes a factor that may increase other risks. For example, caregivers may have to spend hours standing in line to receive food and other supplies. In places like Sri Lanka, where the caregivers are mostly women, this responsibility takes them away from the home, and may increase the possible isolation, and even abuse, of a disabled person left at home.
As both Hui-Chun and Niluka noted in their panel, a father in Taiwan can be affected by the sequalae of the pandemic in as debilitating a way as a mother in Sri Lanka. Each parent may face differing challenges to protect and provide for their child’s well-being; however, the way their challenges became problematic in the first place can also be directly tied to the pandemic. These specific family cases require us to consider systemic approaches that inform: How are we responding to the pandemic globally? How are we truly being inclusive? How can we take advantage of this public health emergency to do something different? As we think about systemic processes of inclusivity, we must consider the growing global mental health needs as well as disparities in access, quality of care, and treatment for marginalized populations. We must also take seriously the wellbeing of healthcare workers and what we are doing to address their professional self-care, an issue we hope to discuss in our next panels.