Lived experience of informal caregivers in long term care in Macao

• Thesis title in Czech: Zkušenosti neformálních pečovatelů s poskytováním dlouhodobé péče v Macao
• Thesis title in English: Lived experience of informal caregivers in long term care in Macao
• Key words: dlouhodobá péče;neformální pečovatelé; Macao
• English key words: long-term care; informal caregivers;Macao
• Academic year of topic announcement: 2024/2025
• Thesis type: diploma thesis
• Thesis language: angličtina
• Department: Department of Public and Social Policy (23-KVSP)
• Supervisor: Ing. Zuzana Kotherová, Ph.D.
• Author: hidden - assigned by the advisor
• Date of registration: 23.06.2025
• Date of assignment: 23.06.2025

References

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IAS, (2023). 照顧者津貼. https://www.ias.gov.mo/zh/swb-services/rehabilitation-service/caregiver-allowance
Kivak, R. (2024). Transactional Model Of Stress And Coping. EBSCO Information Services, Inc. | Www.ebsco.com; EBSCO. https://www.ebsco.com/research-starters/psychology/transactional-model-stress-and-coping
Macao News. (2022, December 1). How Macao can better support dementia patients and their caretakers as cases rise. Macao News. https://macaonews.org/features/how-macao-can-better-support-dementia-patients-and-their-caretakers-as-cases-rise/
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Peng, I. (2019, February 5). The Care Economy: a new research framework, Sciences Po LIEPP Working paper n°89 . https://sciencespo.hal.science/hal-03456901/document
Prevo, Lotte, Linssen, Evelyne, Hajema, KlaasJan, Kremers, Stef, Crutzen, Rik, & Schneider, Francine. (2017). Exploring Informal Caregivers’ Views on Their Perceived Burden. Home Health Care Management & Practice, 30(2), 47–53. https://doi.org/10.1177/1084822317746958
Sit, H. F., Huang, L., Chang, K., Chau, W. I., & Hall, B. J. (2020). Caregiving burden among informal caregivers of people with disability. British Journal of Health Psychology, 25(3), 790–813. https://doi.org/10.1111/bjhp.12434
Song, Y., Wang, H., Yin, Y., Nie, A., Yang, H., Liu, Y., Tao, L., Zhong, H., Zhang, L., & Chen, H. (2022). Caregiver Burden Among Informal Caregivers of Persons Living with HIV/AIDS in Liangshan Prefecture, China. PATIENT PREFERENCE and ADHERENCE, 16, 1027–1035. https://doi.org/10.2147/PPA.S357580
Tang, P. K., Cen, Z., Zheng, Y., Shi, J., Hu, H., & Ung, C. O. L. (2024). Implementation of the Macao dementia policy: a scoping review for the way forward. Frontiers in Public Health, 12. https://doi.org/10.3389/fpubh.2024.1400172
World Health Organization. (2022, December 1). Long-term care. Www.who.int. https://www.who.int/europe/news-room/questions-and-answers/item/long-term-care
Yue, L., Jia, C., Hu, B., Zhang, Z., Bai, M., Wang, S., & Yao, N. (2022). Caregiving stress among family caregivers of older adults living with disabilities in China. Geriatric Nursing, 47, 226–231. https://doi.org/10.1016/j.gerinurse.2022.07.017
Zhang, Y., Liu, M., Han, J., Tian, X., & Xin, Y. (2024). Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS. PATIENT PREFERENCE and ADHERENCE, 18, 677–685. https://doi.org/10.2147/PPA.S454590

Preliminary scope of work

Informal caregivers are unpaid individuals, often family members, close friends or neighbors, who provide support to chronically ill, disabled, or other people in need over an extended period (Prevo et al., 2017). In long term care, 90% of care is provided by informal caregivers, while 80% of these informal caregivers are women (World Health Organization, 2022). In Asian societies, including Macao, cultural values such as filial piety intensify expectations of family to provide care, yet little research exists on how caregivers experience this role. While studies in nearby regions like Hong Kong and mainland China have documented caregiver stress, burden, and coping, the topic remained underexplored in Macao. The current study aims to explore the experience of informal caregivers in long term care in Macao.
Studies have shown that caregivers experience a significant level of burden that is multifaceted, affecting various aspects of their lives. For instance, a study in China revealed that 44.1% of informal caregivers for persons living with HIV/AIDS experienced a mild level of burden, while 7.2% experiencing severe burden (Song et al., 2022). Another study in China also reported that nearly half (47.3%) of family caregivers for older adults with disabilities facing high caregiving stress (Yue et al., 2022).
Caregiving activities are frequently stressful and associated with physical, emotional, economic, and social consequences for caregivers (Prevo et al., 2018; Song et al., 2022). Caregivers often report a deterioration of their own health, including decreased sleep quality, weight loss, lack of energy, and exacerbation of existing illnesses (Song et al., 2022). The intensity of caregiving can lead to significant tiredness and physical strain. Consequently, caregivers with poorer self-reported health tend to experience a heavier burden (Song et al., 2022).
Understanding caregivers’ lived experience is crucial for shaping effective public policies and support systems. Research on the needs of caregivers in Macao remains limited. Sit et al. (2020) reported on the mental health of caregivers. Other studies have been conducted in neighboring regions or within broader Chinese-speaking populations (Song et al., 2020; Yue et al., 2022).
To date, no research has specifically addressed the unmet needs of informal caregivers in Macao. This study aims to fill the gap by providing empirical evidence based on in-depth, first-hand narratives from informal caregivers in Macao. These findings may inform the design of more targeted and effective social and health policy measures.

To explore the lived experiences of informal caregivers in Macao and identify their unmet needs.
1. To describe the daily routines and caregiving responsibilities of informal caregivers in Macao.
2. To identify the emotional, social, and economic challenges they encounter.
3. To understand the coping strategies adopted by caregivers
4. To inform policy recommendations aimed at supporting informal caregivers.
5. To evaluate the extent to which current public policies in Macao support or fall short in addressing the needs of informal caregivers.

Research questions
1. What are the day-to-day caregiving tasks of informal caregivers in Macao?
2. What physical, emotional, social, and economic challenges do these caregivers face?
3. How do caregivers in Macao cope with the demands of caregiving?
4. What forms of support do caregivers currently receive, and what additional support do they need?
5. How does the cultural context and expectations in Macao influence caregiving roles and expectations?
6. How do informal caregivers perceive the role of government and public services in supporting their caregiving responsibilities?Theoretical concept:

Preliminary scope of work in English

Stress Process Model: understanding how caregiving leads to stress and how social and personal resources mediate this stress; the model conceptualized stress as a process influenced by a dynamic interaction between primary stressors, secondary stressors, mediators and outcomes (Pearlin et al., 1990).

Transactional Model of Stress and Coping: exploring caregivers’ appraisal of caregiving demands and their coping mechanisms developed by Lazarus & Folkman in 1984 (Kivak, 2024).

Socio-Ecological Model: health is impacted by the interaction of multi-level perspective including individual, community, institution and policy influences (Bronfenbrenner, 1986).

Care Economy: care work, both paid and unpaid work underpins economic productivity by maintaining individual and societal well-being, including childcare, eldercare, healthcare, and domestic tasks (Peng, 2019). Though vital to economic and social functioning, it remains undervalued and underrecognized, with significant gender, social, and policy implications.

These four models were chosen to provide a comprehensive understanding of caregiver burden by capturing individual stress responses, coping mechanisms, social and policy influences, and the structural undervaluation of unpaid care work.