On 16 January, the Caritas Institute of Higher Education released the findings of its study on ‘Family Caregivers of Persons with Advanced Illnesses’, which show that carers of persons with advanced illnesses not only experienced greater stress during the COVID-19 pandemic, but also encountered discrimination in the workplace.

Funded by the EOC’s 2020-21 Funding Programme of Research Projects on Equal Opportunities, the study aims to determine the high-risk factors of caregiver stress in Hong Kong; investigate the relationship amongst the caregiver stress, care recipients’ illness and the employer support; and explore any difference in types of caregiver stress between employed and unemployed caregivers by means of questionnaire survey and in-depth interviews.

The findings of the study show that the average time spent by carers on their caring duties exceeded 40 hours a week, with the carers of advanced cancer patients spending longer hours than those caring for patients with degenerative illness, end-stage organ failure and other illnesses. The majority of the caregivers accompanied their care recipients for medical consultation (81.9%), provided emotional support (65.3%), assisted in grocery shopping (62.8%), assisted in dining or prepared food for the care recipients (59.4%), performed housework (54.3%), assisted mobility (53.1%) and provided financial support (44.7%).

In terms of the stress level, the mean of caregiver stress level (measured in Kingston Caregiver Stress Scale) was 25.85, with those self-employed and housekeeping persons experiencing higher stress level. Most of the carers (65.1%) expressed that they faced extra stress during the pandemic period.

For carers who were working, most (79.6%) experienced extra work stress for caregiving, and more than one-third of them (36.9%) thought that discrimination against caregivers is common in the workplace of Hong Kong. Indeed, the major problems encountered by the carers were service accessibility, caring roles and role conflicts, and self-development. Most of the working participants reflected that there were neither carer-friendly policies nor caregiving benefits in their workplace. Other common barriers faced by the caregivers were difficulties in daily care and transportation.

The study included a number of recommendations, such as early referral of palliative home care services and setting up a designated hotline operated by a group of experienced home care nurses and social workers by the Hospital Authority; increase appropriate training to both formal and informal carers of the patient with advanced illnesses by qualitied institutes, such as NGOs; and setting guidelines for employers to build a caregiver-friendly workplace. In particular, the Government should take the lead and be a role model of developing policy for the caregiver-friendly workplace.  

• Read the study report
• Read the press release on the study