The sample of carers (n = 20) (Table 1.) was predominately female (65%), aged between 29–72 years old, with all carers with one exception being direct family members (e.g. parents, siblings, children and family by marriage). Cancer sites included breast, colorectal, oesophageal, stomach, and ovarian. HCPs (n = 22) represented a broad range of medical staff from departments of surgery, radiotherapy, palliation, nursing, nutrition and social work, and included staff in both senior and junior positions.
Carers gave their time between their caring responsibilities. With the exception of two carers within our key informant interviews (phase 1) and one in our main study (phase 2), all carers were informal and not paid. Each participant was provided with a small financial compensation for his or her time in contributing to the study.
Study participants by phase and role
1: Study Design and Development
2: Descriptive Qualitative Study
3: Data verification and validation
Other Healthcare Professionals (Nurses, Nutritional Dept., Social Work Dept.)
Four key themes were identified from the data. Unmet needs for carers in Vietnam were described in terms of material requirements such as accessible and comfortable facilities, accommodation, and finance. Other reported needs related to information on cancer, caring, and nutrition; emotional support needs; and training on how to provide care during treatment and recovery. These needs were identified across all three participant groups with little variation and confirmed during phase 3 of the study in which the analysis was validated and deepened without new themes emerging.
Both carers (C) and health care providers (HCP) described the hospital/inpatient context as challenging and difficult. Carers and HCP noted the heavily overcrowded nature of centralised oncology hospitals, resulting in patients often sharing beds. Participants in our study acknowledged that carers contribute to this overcrowding. Carers are expected to remain bedside to support the needs of patients, yet are often asked to leave the ward during working hours. Many carers often reported feeling resentful at being asked to leave their loved one’s bedside for fear the patient would be neglected if they were not there to provide support:
My wife has not been able to walk since the surgery. In the days after that, I had to help her to use the toilet and to feed her, and I was still asked to get out (of the ward). Sometimes I got mad. I said, “Now you don't have anyone to care for the patient, but you still throw us out? We do not want to lie here, but we have to. If we are not here, who's holding the bedpan?” Do the doctors and nurses ever take the bedpan to the patients? (C/HN)
Many carers and HCP reported that both carers and patients must travel long distances to reach national-level oncology hospitals in Hanoi or Ho Chi Minh City. This results in difficulties for carers who must find affordable accommodation near the hospital for the duration of the patient’s treatment. Carers described situations in which they had to share motel rooms with other carers or stay in the corridors and communal areas of the hospital when asked to leave the wards. Often carers slept next to or under the patient’s beds when they were in the wards. Some carers staying in nearby motels described fearing for their safety; others noted the risk of having their possessions stolen if they slept in the hospital:
The first time I spent up to tens of million for renting a motel room out there. The first days, I didn’t know how to find a cheap motel. I came to a place up there and it cost me 300,000 VND per day (13 USD). I was shocked. It cost me a million [dong] for three days, without counting food costs. (C/HN)
Family members are not allowed to stay in the ward. They can only stay in the ward when needed. Family members have to take a mat to sleep outside in the corridor, and each time we come here for 25–30 days. I am the main caretaker. I sleep like that. I have aches and pains but I have to suffer. I am tired. (C/HCMC)
Costs for cancer treatment and services in Vietnam have been well documented. Economic challenges relating to the aforementioned accommodation and travel costs were additionally described as adding to the already difficult economic pressures experienced for families dealing with a cancer diagnosis:
My mom gets car sick, so she could not go by bus. Each time she went to Hanoi we had to pay 4 million [dong] for a taxi and 2 million [dong] for the train. (C/HN)
I think that most of the cancer patients that come here are from the provinces [rural areas]. We face difficulties in [terms of] travelling time. And worse is the financial problems. The majority of cancer patients are [living] in remote provinces and live in difficult conditions. We eat charity rice. We eat charity porridge. (C/HN)
Many participants described having a number of informational needs. These are categorised in two broad categories: information carers required about and for the patient related to their diagnosis, expectations for treatment, and questions about nutrition and traditional medicine; and information they needed as carers to both support themselves and provide logistical information on things like accommodation and places to stay near the hospital:
Even though we are family members, our knowledge about the field of cancer is still very limited. Now I have to take care of nutrition and psychological health.. My experience of patient care is very limited. (C/HN)
Information needs for the patient were normally prioritised by carers in the study. Carers wanted information on a wide range of factors, from the aetiology of cancer, to information on the ‘best’ hospitals and doctors, to information on probability of survival:
We needed to choose a place to get treatment. For cancer, there are many places, but how do we find the best and most suitable? That is very important because there are many hospitals that have the ability to treat -- like here, they focus on cancer treatment. I had to look around so that I knew that here is the hospital specialized in cancer. Before I didn't know the difference between hospitals. (C/HCMC)
Carers often requested simple information such as the stage of the patient’s diagnosis and what this meant. They often reported a lack of information and communication between healthcare providers and carers and patients. This was often attributed to the lack of time that HCPs had for in-depth conversations. This problem is potentially exacerbated by patients relying on internet sources for information about cancer, and not knowing which sources to trust and which sources were accurate:
Basically, I'm not a person in the field [of cancer] so I do not have the knowledge. But the information on the Internet is too wide, so the knowledge we learn from the Internet is difficult to apply for the care of our family patients -- what to eat, what not to eat, is milk allowed or not? Our information is not good; you don't know what to select to hear. (C/HCMC)
Information from different sources is not correct, thus the readers have the wrong understanding. So, when the patient asks questions, the doctor will explain the information to the patient accurately. But the patient will not accept the explanations of the doctor because what the doctor has said is different from what they have heard or read. (HCP/HCMC)
Doctors and healthcare professionals also described the difficulties in reiterating information to multiple carers. They referenced efforts made to create solutions to communication problems, such as the creation of regular group meetings organised by the hospital to try and answer common questions from carers.
When one person comes, they take care the patient. The next person comes, they also take care of the patient. So as a doctor, we feel very upset -- doctors, nursing staff, head nursing staff and nurse aides… So they give medicines to a different person [caring for the same patient] each day. Sometimes the family has eight children; sometimes they have low awareness. They even sometimes they don't hand over the medicine [to the patient], which is the most important [task they have to do]. (HCP/HN)
Nutrition appeared to be a central concern for many carers. Carers described a feeling of confusion or uncertainty relating to what they should be feeding the patient and when. Carers wanted to know what food they should provide (carers provide all meals to patients) to help maximise patients’ treatment outcomes and recovery. Specific dietary information was requested for different types of cancer, different stages of diagnosis, and different stages of the treatment process (e.g. food before and after surgery, food during chemotherapy, etc.):
The doctor is not able to advise you carefully about nutrition; they are only consulted about the [patient’s] drugs or the daily necessities. I had to search the Internet, but the information from internet is not the same. (C/HN)
Information needs to support the carer focused around training and on providing practical information on how to navigate the hospital administration, how to find cheap and comfortable accommodation, and how to support their emotional and mental health. It was suggested that resources such as booklets and online information should be created and provided to carers when they arrive in the hospitals.
Emotional and Support Needs
Carers described a wide range of emotional and psychological needs and a lack of specialised services available to help them cope with the strain and emotional impact of caring. Carers described feelings of stress, shock (at the diagnosis), fatigue, grief, and sadness that made it difficult for carers to look after themselves. HCPs additionally observed similar emotions and strains, and described how patients sometimes worry that their carer will abandon them due to the stresses they experience in their role:
I went to the second floor to cry hourly because she (her mother) was diagnosed at the late stage. [But] my mother is so old she may die on the operating table. So even with such surgery she cannot live long, either. It is very miserable psychologically. (C/HN)
Usually in the late stages, the patient is afraid of being abandoned because many caregivers have been helping for a long time. They are tired, and could not afford to pay anymore and they will abandon the patients. Patients are really afraid of that. (HCP/HCMC)
Carers additionally reported stresses upon relationships between carers and the patient, and of the lack of support groups and communities to address this problem. Most support for carers came from their peers on the wards or in motels close to the hospitals rather than from formalised services. Spousal conflict and challenges in decision making were frequently described:
Patients often feel uncomfortable. Husbands and wives also fight and argue… so we need to calm them down … Some couples in the ward fight and swear at each other. I told the wife to forgive the husband [referring to the patient] because he has a disease and is under pressure. He refused to take drugs, swore and asked for death. So [I told his wife], “You have to say nice words, persuade him. (C/HCMC)
Carers indicated a need for training and preparation for being a carer, particularly around certain clinical procedures. This included information on providing how to care for their family member and how best to support them during their treatment and recovery. Due to the crowded nature of hospitals, carers described having to undertake roles in providing medical treatment, for example holding chemotherapy bags, holding IV fluids, and changing dressings on wounds. Carers reported needing specific training to fulfil these roles, particularly given that they would need to continue some of these roles when the patient is discharged:
By the end of the week, the doctors and nurses are busy. If I call [for one of them], it takes them a very long time to get here because they are busy taking care of many people. Sometimes I have to learn how to do it myself. Sometimes I even want to learn the way to get the veins myself. They are so busy that sometimes they make mistakes. (C/HN)
I have asked the doctor very carefully, so when the doctor came, I asked him what is the best way to stop bleeding and how to treat hemorrhage. The doctor told us some methods, so now it’s stable. But the thing is when I get home, I don't know how to treat. I have to ask the doctor how to stop bleeding temporarily so that I can bring the patient here. (C/HCMC)
Along with specific training, carers highlighted the need for clearer signposting to different services and sources of information in the hospital. While some supportive resources and services have been developed (such as information sessions, online groups, leaflets and posters), often carers did not know how to access these resources or where to learn about what information is available. HCPs recognized the value of having carers who were trained and prepared, and suggested that training could be provided to carers to better support them. Although paid caregiving is uncommon in Vietnam, some HCPs suggested this was a possible area for growth:
The training of caregivers is very essential. Actually, it is necessary to have a school which organizes nursing classes or class for carers. (HCP/HN)