Press release - immediate release
December 11, 2022
Taking care of beloved ones who have cancer is challenging, the pandemic had made it even worse. According to the survey conducted by the Hong Kong Anti-Cancer Society (HKACS), during the fifth wave peak of pandemic, the anxiety index of the cancer caregivers had increased by 34%. Even when the pandemic has subsided, the anxiety index is still 17% higher than pre-pandemic. Nearly 60% consider that caretaking work is meaningless and nearly 60% feeling depressed. HKACS considered that the psychological condition of cancer caregivers has reached the tipping point. HKACS suggested the caregivers should take care of themselves first and ask for help when needed, instead of keep pushing their limits when things get tough.
Over the past decade, new cancer cases have jumped up by 30%1.2, with one in every four male and 1 in every 5 female had cancer3. Depending upon their disease progression and treatment types, cancer patients may experience different health issues, such as pain, fatigue, mental confusion or memory loss, as well as appetite loss4, making caretaking of cancer patients more challenging than other diseases.
To understand the stress level of the caregivers of cancer patients, HKACS conducted "1000 days fighting COVID: a survey about the caregivers of cancer patients" and interviewed 256 cancer caregivers. Most of the caregivers are female (78%) and middle-aged (60% aged 40-59). Half of the cancer caregivers are working (53%) yet need to take care of other person(s) at the same time, including their children (42%), or their parents (37%).
67% feeling trapped with the cancer patients at home after being a caregiver. 38% of them feeling lifeless, while 59% feeling depressed after becoming cancer caregivers, and 11% of them even had considered committing suicide or committed suicide.
Caretaking work had already made the caregivers fatigue (55% interviewed experienced psychological fatigue, and 52% experienced physical fatigue in the past three months), the pandemic had made them more stretched and kept staying 'highly-alerted'.
During the fifth wave peak of pandemic, the anxiety index of the cancer caregivers had increased by 34% (before the pandemic: 5.8; during fifth wave peak: 7.8). Though the pandemic had subsided in May to mid-August this year, their anxiety index is still 17% higher than pre-pandemic period (anxiety index: 6.8). 70% interviewed 'worried that the cancer patient gets infected due to insufficient preventive measures': 54% interviewed 'worried that they might make wrong decision for the cancer patient (e.g. if they should send them to hospital)'. 81% interviewed considered that their chances of infection are higher than others as they need to visit hospital/clinic regularly. Therefore, 82% interviewed considered that, as long as the COVID exists, their stress is still there.
Even though caregivers have paid lots of efforts in taking care of the patient, 57% of them feeling their caretaking work is meaningless. Dr. Rico LIU King Yin, Chairman of Cancer Education Subcommittee of the HKACS considered that cancer caregivers in Hong Kong are very stressed. Some caregivers may feel their 'sacrifice' is meaningless as the patient may die eventually or being complaint by the patients or other relatives and friends.
Dr. Liu pointed out that, being a caregiver of cancer patient is a new role that involves continuous skills learning and information gathering, learning and adaption takes time. He hoped that the caregivers shouldn't be too harsh to themselves and not taking all the responsibilities onto themselves; they should seek for professional assistance when needed, share their worries and problems with their peers.
Sometimes, cancer patients may express their fear to cancer and death through anger, and the one closest to them (caregivers) suffered the most. He also suggested caregivers should understand the emotions of the patients and explain to the patients their difficulties. On the other hand, some family members and friends may complain about the caregivers without understanding their struggles; though their intention may be just caring about the patient, it would still cause unnecessary stress to the caregivers. He suggested that other family members or friends can help with providing encouraging comments, and share the caregiving work, leaving the caregivers some time on their own. He also pointed out that, even caregivers may not be able to change the outcome, when they stay with the patients and provide them appropriate help (like the food they like) and accompany them at their most difficult times, this would be a great support.
In Dr. Liu's opinion, the current support from the society to cancer caregivers is insufficient. Therefore, HKACS published a holistic guidebook, 'The A to Z Guide for Carers of Cancer Patients', providing information related to Chinese / Western medicine, stress management, support services and financial arrangements. HKACS has been providing continuous support for cancer patients and their caregivers during pandemic, including the Jockey Club Cancer Survivorship Care Project which provides support for cancer patients throughout different stages (diagnosis, treatment, and recovery) by a team of professionals; Prof. H.C. Ho Memorial Medical Assistance Programme which subsidises cancer patients to assess to self-financed drugs listed by the Hospital Authority; the Charity Bed Programme which lets financially disadvantaged patients be benefitted from staying at the Jockey Club Cancer Rehabilitation Centre; and the Portia Cheung Breast Cancer Support Programme which supports breast cancer patients assess to treatment or/and drugs that currently are not funded by the Government or other sources.
HKACS also provides workshops for cancer caregivers, including emotion management, nutrition, lifting and transferring techniques, to help caregivers enhance their knowledge and relieve their stress.
Dr. Liu also provided six 'self-care' tips for caregivers:
Dr. Liu also encouraged the caregivers, 'Your cancer patient is important, but you, the one providing care for them all the way, are also precious!' He hoped caregivers understand their work is essential for cancer patient, while they should also take good care of themselves. They should not be over-worried: under the 'new normal' of pandemic, social life can be resumed after taking preventive measures and get vaccinated for COVID and influenzas. Meanwhile, he hoped that the community services for cancer patients (e.g. meal delivery, transfer services, etc.) and the day care centres would not stop due to pandemic, to leave some room for caregivers; he also hoped the Government can provide more resources to support the caregivers of cancer patients.
1 Overview of HK Cancer Statistics of 2020. Cancer Registry.
https://www3.ha.org.hk/cancereg/pdf/overview/Overview%20of%20HK%20Cancer%20Stat%202020.asp
2 Overview of HK Cancer Statistics of 2021. Cancer Registry.
https://www3.ha.org.hk/cancereg/pdf/overview/Overview%20of%20H%20Cancer%20Stat%202010.asp
3 Cancer Prevention, Detection & Screening. HKACS. https://www.hkacs.org.hk/ufiles/CancerScreening 1.pdf
4 Cancer Caregiving in the U.S. An Intense, Episodic, and Challenging Care Experience National Alliance for Caregiving, in partnership with the National Cancer Institute and the Cancer Support Community June 2016,
https://www.caregiving.org/wp-content/uploads/2020/05/CancerCaregivingReport_FINAL_June-17-2016.pdf
