Table 4 Codes and Exemplary Quotes
Codes | Exemplary Quotes |
|---|---|
Category 1: Carer Attributes | |
1. Sense of responsibilityBo | “I just take care of my parents as they took care of me when I was young. It’s something I need to do. It’s my responsibility.” (Carer 7) |
2. Readiness for accepting supportBo | “They (carers) need to accept their situations. If they can’t, they’ll regard accepting help as an act of weakness and being dependent.” (Carer 7) |
3. Interactions between patients and carersBo | “We support each other on this journey. S/he (care-recipient) has persevered for so many years and that gives me confidence, a confidence that I can persevere like s/he does.” (Carer 3) |
4. Support from other family membersBo | “Then they (patient and carer) have to find support from family members. Like the old couple, they may seek help from their children so that the carer can take a break occasionally.” (Professional 1) |
5. Mutual support of carersBo | “I finally identified a WhatsApp group of carers. We can share information and sometimes vent our emotions there.” (Carer 5) |
6. Interpersonal network of carersBo | “First, I will get to understand the case (carer) to see if any social support or network is available. Sometimes, if they need practical support, they can actually reach out to their friends or church members.” (Professional 20) |
Category 2: Social Care Services | |
7. Home-based supportBr | “It takes 3 months before the domestic helper arrives. It’s better to have someone go to their homes and exchange dialysis fluid for them, rather than just sending them to elderly care homes.” (Professional 11) |
8. Respite careBr | “The (day) hospital is good. It offers different activities and physiotherapy. They are indeed patients. We (carers) feel safe for them to be looked after by healthcare staff.” (Carer 20) |
9. Venting spaceBr | “They are carers, so they have less time to keep their old friends. They have fewer and fewer friends over time. Then, they have fewer chances or channels to vent their feelings.” (Community Member 21) |
10. Patient transport servicesBr | “We can recommend those accessible taxis or buses, but there are queues for transport services, and they are too expensive for them (patients and carers). They pay 100 dollars for a one-way trip.” (Professional 12) |
11. Financial and material assistanceBr | “Because of the household finances, they (patients and carers) need to work. If they can receive financial assistance, they can stay home and have more time to rest.” (Carer 9) |
12. Timely transition to institutional careBr | “The biggest challenge is sustainability. They (carers) need to wait for 3 to 6 years for a place in an elderly home. They may put a lot of effort in caregiving at the beginning, but when time passes and they feel tired, some may want to withdraw from caregiving.” (Professional 16) |
13. Need-oriented service designBr | “Although they (service providers) offer certain kinds of support or service, they don’t always meet the needs of carers. I think that understanding the needs of carers is of utmost importance.” (Community Member 8) |
14. Carer-centered care approachBr | “The community resources for patients are much more than those for carers. Carers need to initiate supportive efforts by themselves.” (Professional 9) |
15. Reaching out proactivelyBr | “If anyone wants to provide social capital or community support to these people (carers), they can’t say ‘I offer help, approach me.’ Instead, they need to reach out to these people, and tell them what support and service is available for them. This is the only way carers can find help.” (Community Member 8) |
Category 3: Healthcare Services | |
16. Optimizing treatments for patientsBr | “If you can relieve the symptoms of the patient and improve their self-management and mental wellbeing, you can alleviate the burden of the carer.” (Professional 4) |
17. Discharge supportBr | “I heard a case that a physician discharged a patient without telling him what to do. Does that patient really know how he can manage his life at home?” (Carer 11) |
18. Community-based healthcareBr | “In future, every public housing estate should have a center providing all kinds of (healthcare) services. They can offer basic care like the usual follow-ups. Of course, for more advanced care, you need to go to the hospital.” (Patient 11) |
19. Healthcare professionals’ attitudesBr | “They show you that they are walking with you. They want to go through the journey with the patient and carer.” (Carer 2) |
Category 4: The Community | |
20. Mutual support of neighborsBo | “If the carer wants to go out for grocery shopping, the neighbor may offer help to look after (the care-recipient) for a couple of hours. This is social capital, but I don’t think we can do this in Hong Kong. Even if we set up clinics inside the housing estate, the neighbors are not under your control.” (Community Member 18) |
21. Trained volunteer workforceBo | “The churches can help. There are many professionals attending churches. Carers can send their patients to churches for several hours. Without training, other people in the neighborhood do not dare to take up this responsibility.” (Community Member 5) |
22. Flexible working arrangementL | “It’s (company) cold and unsympathetic. They knew my situation, but they didn’t show understanding and gave me more tasks to do. It’s still performance-driven. Even when I expressed my need to look after my hospitalized family member, my company still penalized me because I was late at work.” (Carer 11) |
23. Inclusive public spaceBr | “We need to check the accessibility of exits when my mother needs to travel by train. If it’s far away, even if she wants to go out, she wouldn’t take this way.” (Carer 7) |
24. Advocacy workBr | “If there is greater awareness in the community, people will be willing to help each other. Some normal people, who aren’t carers, may give a little help that solves a big problem for carers.” (Carer 5) |
Category 5: Information | |
25. Caregiving informationBr | “In terms of practical support, they can teach you how to address the physical and psychological needs of patients with kidney failure. What do those signs and symptoms mean? I think there should be a full package, instead of just a lecture. A lecture is just a single session. I can forget everything 2 weeks after attending a talk.” (Carer 11) |
26. Reliable and effective communication channelsBr | “There is lots of information. You can find it on (social) media, on the internet, or on TV. Information is overwhelming nowadays. You can even find it on your cell phone.” (Patient 15) |
27. Referral by social workersBr | “I know nothing about these resources. Are they really available? Medical social workers aren’t very caring. They manage financial assistance and conduct asset reviews. These tasks shouldn’t be the job of a social worker. What I need from them is information about community resources.” (Carer 11) |
28. Healthcare professionals’ knowledge of social careBr | “They (patients and carers) believe in healthcare staff. It helps if physicians and nurses know more about the resources in community.” (Professional 15) |
Category 6: Policies | |
29. Increasing resources for carer servicesL | “There are too many time-limited projects. Sometimes, when they (carers) get to know the service, it has already ended. The situation here is that services are conducted on a project-by-project basis.” (Professional 16) |
30. Coordinating supportive servicesL | “I think it’s (carer support) scattered. There are various types of carer support. We have many elderly centers, but how can they be coordinated? Is it the carer support that we want if something is offered to carers? Can carers find this support? Which organization they should approach?” (Professional 20) |
31. Researching carer situationL | “We have started having some understanding about their (carers) situation, but that’s not enough. We don’t have figures and data to formulate policies that serve the public interest.” (Community Member 16) |