Eunice Lee Tsz-ying, a social worker from BOKSS understands Chan’s initial reaction to her daughter’s illness. When a person becomes mentally ill, their personality and temperament change, they seem to have “changed into another person, living in another world”, as Chan puts it. This puts immense pressure on the carers as they struggle to make sense of reality.
“The families say it is like they have lost a family member,” Lee says. “On the one hand they have to take care of the patient; on the other, they have to bear the transition period of their ‘loss’.”
Lee thinks that, like Chan initially, many carers resist seeking help due to the conservative atmosphere in the community, where speaking out may trigger a sense of shame and self-blame in the Chinese context.
Chien Wai-tong, a professor at the School of Nursing of the Hong Kong Polytechnic University, has been studying the role of the family in the recovery of the mentally ill for nine years. He says family intervention is important for both the initial discovery of the illness and for the recovery process.
Chien says the family carer is the first and most crucial person to discover the illness and gauge the needs of the person with mental illness. This is important because early diagnosis and treatment with anti-psychotic drugs and psychotherapy increases the chance of successfully controlling the symptoms.
The family plays a supportive role in the treatment and recovery and, in order to do so, Chien says family members need to learn how to control the “amount” of emotion they display in their interactions with the mentally ill person. “The lower the ‘expressed emotion’, the lower the rate of relapse of the illness,” he says.
Yet, despite the central and often indispensable role that carers play in helping patients recover from mental illness, there are no official counselling services or training programmes specifically aimed at carers. Currently, they have to rely on a few non-governmental organisations like BOKSS, SOCO and Hong Kong Familylink Mental Health Advocacy Association, which provide training workshops and self-help groups for carers. Due to limited resources, these are usually small-scale operations that can only serve a limited number of people.
Hong Kong lags behind countries where the treatment for mental illness is family-based; instead the government adopts a policy that relies on patients themselves to seek help. The emphasis is on medication of the patient and other factors. Family carers are considered supplementary in the recovery process.
“Owing to the high costs, prevention is rarely carried out. If outreach services are provided, it would help to get people on treatment sooner and lower the relapse rate,” says Chien.