Globally, rapidly aging populations give rise to increasing demand for home care services. The World Health Organisation estimates that approximately 1.3 billion people worldwide require care due to ageing or disability. In Hong Kong, owing to deeply rooted cultural norms that emphasise family bonding and rising healthcare costs, caregiving is often performed by family members, imposing heavy physical and mental strain on them. A research team at The Hong Kong Polytechnic University (PolyU) has investigated the quality of life (QoL) of the City's family caregivers and explored the use of data-driven assessment tools to support the development of effectively targeted interventions.
Led by Prof. Richard XU, Assistant Professor of the PolyU Department of Rehabilitation Sciences, the researchers surveyed QoL of 323 informal family caregivers in Hong Kong from Jan to Mar 2025. Their questionnaire included items relating to physical health, mental health, social relationships, well-being and fatigue, as well as about their experience with the existing caregiving.
The findings reveal a concerning decline in both the physical and mental health of family caregivers. Among those surveyed, 42% had encountered mental health issues, with more than half of them reporting symptoms of depression and one-fourth suffering from anxiety disorders. Additionally, nearly 20% of respondents said that they had mobility issues.
The researchers pointed out that current policies prioritise service quantity over caregivers' QoL, thereby failing to provide systematic and long-term support to their health and well-being. In particular, effectiveness of respite care services, which are designed to offer temporary relief, is severely undermined by uneven service distribution and prolonged waiting times. These limitations are especially detrimental to caregivers who provide intensive care for more than 16 hours per day, leaving their needs largely unmet. Furthermore, while the situation of "the elderly taking care of the elderly" and "the elderly taking care of the disabled" becomes more common, many elderly caregivers cannot access certain support services due to digital barriers. For instance, the self-service "Information Gateway for Carers" launched by the Social Welfare Department in 2023, remains inaccessible to 80% of caregivers over 60.
Prof. Xu said, "Serious gaps in Hong Kong's existing caregiver support and insufficient societal recognition of caregiver well-being both highlight a pressing need for enhanced services and policy reforms. The Government should establish a robust cost-benefit analysis system to guide the strategic allocation of resources, and focus on providing psychological counselling for caregivers and strengthening social support networks. This would improve caregiver QoL and demonstrate a societal commitment to their well-being."
In view of the urgent challenges faced by family caregivers in Hong Kong, Prof. Xu and his team conducted a comprehensive evaluation of caregiver QoL. They propose utilising data-driven assessment tools, such as CarerQol, to assess caregiver needs and inform relevant policy reforms.
CarerQol helps measure caregivers' quality of life
Developed in 2006 by Erasmus University Rotterdam in the Netherlands, CarerQol is a data-driven assessment tool designed to evaluate caregivers' physical and mental well-being, economic stress levels and social support networks, thereby measuring the impact of informal caregiving on their health and QoL. The tool has been widely adopted in research and health policy contexts in European countries, including the Netherlands, the United Kingdom and Germany, to guide resource allocation. Its application at the community level varies depending on local health systems and research initiatives.
To enable application of CarerQol in Chinese societies, the research team engaged native speakers for translation, professional translators for back-translation and a group of the general Chinese public for cognitive debriefing, ultimately introducing a culturally adapted Chinese translation of CarerQol. Through hospitals, patient associations and community health centres, the team recruited a total of 324 caregivers with diverse backgrounds from across China who reported providing care for patients with disabilities or long-term care needs for more than five years, and asked them to complete the web-based CarerQol survey, with the aim of validating the tool in a Chinese context.
Published in the international journal Health and Quality of Life Outcomes, the findings indicate that CarerQol performs well in Chinese society. It effectively reveals significant differences across all known groups. For instance, participants in good health, with higher education levels and who lived in urban areas achieved significantly higher scores than their counterparts. CarerQol also exhibited strong test-retest reliability, with highly consistent results when administered under similar conditions on the same group of participants. These findings verify that the tool provides reliable and stable results for caregivers to better understand their own needs and improve self-management. The researchers envision that, with its high cost-effectiveness and potential for local application, CarerQol can offer policymakers essential data evidence to support more accurate resource allocation, advancing the social welfare system.
In addition, the team suggested that natural language processing and artificial intelligence-driven text analysis tools be used to streamline the thematic coding of data from interviews and focus groups, enhancing both the efficiency and depth of data analysis. Online forums and social media, meanwhile, could facilitate virtual focus groups and sentiment analysis, offering valuable insights into diverse perspectives on quality of life and guiding the development of more effective support strategies.
Prof. Xu added, "Advanced technological innovations have facilitated both qualitative and quantitative studies in the areas of both health-related and overall QoL, broadening research design methodological flexibility. Wearable devices and mobile health applications, for example, allow researchers to obtain real-time physiological and behavioural data, enabling longitudinal tracking of QoL metrics like physical activity levels and sleep patterns, and hence more comprehensive analysis."
