Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development.


| BACKGROUND
Sustainable Development Goals outline the need to reduce premature mortality from non-communicable diseases (NCDs) in low and middle income countries (LMICs). 1 Essential to this is the development of culturally specific supportive care services which seek to support patients and families to live with and beyond disease. For interventions and services to be appropriately designed, it is necessary to understand context and culture regarding the role of the family, and how the roles of family caregivers are understood.
In Vietnam, an estimated 165,000 people are diagnosed with cancer annually. 2 The majority of these cases present at a late to advanced stage 3,4 and an estimated 115,000 people die from cancer per year. 2 There are significant challenges in providing timely and effective cancer services, [4][5][6][7][8] as well as significant barriers that create challenges in accessing services. 9 Cancer care research indicates that when someone is diagnosed with cancer, informal care is often provided by close family relatives.
Caregivers are defined as any family members such as spouse, children or grandchildren who provide caring tasks. 10 Providing informal care can have sustained impact on caregivers physical and mental health 11 compromising their ability to carry out their cancer caring role.
This, in turn, can often impact on patient outcomes. [12][13][14] This link demonstrates the need to understand the roles of family caregivers and their caring burden in order to support families and promote their health and wellbeing, as well as to optimize outcomes for patients. This is of critical importance in settings with limited resources.
In a low middle income context, many families are forced to manage severe complications and health care needs, with minimal health literacy and limited health care professional input.
Understanding the roles of family caregivers and how care in LMICs like Vietnam is conceptualized is of significant importance in effectively developing interventions to address challenges faced by caregivers. No studies exist in Vietnam describing the roles of family caregivers specifically in specialized, central cancer hospital settings.
The objective of this study was to understand how care is conceptualized within the Vietnamese context and to use this information to guide the development of interventions for cancer patients and their families. No participants invited refused to take part in the study. Inclusion criteria for family caregivers were that they were currently caring for cancer inpatients at the hospital and were over the age 18. HCP were purposively sampled from different departments (internal medicine, radiotherapy, chemotherapy, surgery, palliative care, nutrition, and social work departments) in each hospital and invited to participate via email. Inclusion criteria for HCPs were that they were employed as a HCP at our study sites. All participants were fully informed about the study and provided informed consent to participate.

| METHODOLOGY
Prior to data collection, the team conducted consultations with caregivers (n = 12) and HCP (n = 23) to inform our methodological design and interview guide development. These individuals were not included within the study presented. This process allowed the team to design a data collection process with minimal disruption to care- Partial simultaneous translation (summaries and key points of discussion) into English was conducted by one of the Vietnamese researchers to allow the English-language team members (one female, and one male) to follow conversations and if appropriate input questions or probes without breaking the flow of discussion. Interviews were audio recorded and transcribed verbatim. The study has been reported according to Consolidated criteria for reporting qualitative research guidelines.

| Data analysis
Recordings were transcribed in Vietnamese and translated into English. Translations were checked by the Vietnamese research team, and nuances in language were discussed in data analysis meetings.
Data was analyzed manually and inductively using thematic content analysis. 15,16 IDI and focus groups were analyzed separately and combined together following identification of identical themes and codes. Codes and themes were collaboratively identified after reading and re-reading transcripts (in Vietnamese and English).
Analysis occurred face to face with the Vietnamese research team members traveling to the UK to conduct analysis. This allowed greater discussion of themes, implications, translational interrogation and discussion of nuance within transcripts. Field notes taken by all the researchers were also used to corroborate and deepen analysis.
Following completion of analysis, results were shared with both HCPs and caregivers at five oncology hospitals throughout Vietnam in Hanoi, Ho Chi Minh City, Da Nang, Hue and Can Tho, in order to validate and verify data and assess the geographic generalizability of our findings. The research team met HCPs (n = 28) and carers (n = 11) at each site to discuss the findings of the study in-depth. This allowed triangulation of data, 17 allowed the team to establish that saturation had been achieved, and increased rigor and confidence in results.

| RESULTS
This study highlighted that family caregivers in Vietnam experienced significant burden in fulfilling five critical roles in the care for cancer patients. Roles included 1 making decisions regarding treatment and care of the patient, 2 taking responsibility in relaying information to patients, 3 supporting the provision of basic needs and nutrition, 4 providing emotional support, and 5 providing financial support.
Caregivers are almost exclusively family members, and caring is considered an integral family responsibility. Care is often provided collectively by multiple members of the family. These different roles and expectations offer both opportunities and challenges in providing effective care for people diagnosed with cancer, especially in a context in which the health system has limited capacity.

| Characteristics of family carers in hospital settings in Vietnam
Family caregivers participating in our study (n = 20) were predominately female (65%) and aged between 29 and 72 years old. Carers (with one exception) were direct family members of the patient (e.g., spouses, parents, siblings, and children). Family caregivers were caring for family with breast, colorectal, esophageal, stomach, and ovarian cancer diagnoses. HCPs (n = 22) participants included staff in both senior and junior positions. HCPs represented different departments within hospitals including internal medicine, radiotherapy, chemotherapy, surgery, palliative care, nutrition, and social work departments.
Informal caregivers (the literal translation being: người chăm sóc không chính thức) are often referred to as "family persons" or "người nhà". Participants viewed the term "carer" as redundant in Vietnam as the role is synonymous with being a family member. At times the role of primary carer is conducted by elderly spouses who also have health issues. Despite the collectivist nature of caring, the primary burden at times falls upon elderly members of the family.
It was reported that, in general, personal and supportive care in Vietnam is not provided by health staff. All supportive care is conducted by family members who describe themselves as unskilled and lacking knowledge about health and health care. Caregivers reported having no prior medical knowledge or experience, leaving them unequipped to provide the multiplicity of caring roles required.
It was noted that, for a minority of patients from affluent backgrounds, a "carer" may be employed to stay with the person requiring treatment in hospital. In these rare cases, such hired carers might have professional training.
Caring roles are often shared by multiple family members, meaning that the caregiver staying in the hospital often rotates among family members. This can create difficulties and challenges in providing continuity of care. It was noted that communication of information between doctors and multiple family caregivers was a challenge. Notably, despite the crucial roles that family caregivers provide for patients, there is often a lack of recognition or supportive resources for them within the health system, meaning that their needs are unmet.
Each day there is a different carer. In some case a patient's family has eight children. They each take turns to look after the patient (FGD 2, nursing staff, hospital 1).
In Vietnam the family members take care of everything (FGD 4, doctors, hospital 2).

| Making decisions about treatment and care
Participants indicated that medical decision making when a patient is  There will be some cases where the patient's family says that they do not want their mother to know. In that case I still examine the patient as usual but the disease prognosis was exchanged with the patient's family (IDI 9, doctor, hospital 1).

| Responsibility to relay information
The constant change of family members was described as frustrating by HCPs as they worried regimes of treatment were not shared or may be miscommunicated between family members.
Consequently, the medications sometimes were taken inappropriately or incorrectly.
For example, (caregivers) are told to give the three day course of medications for patients. But they didn't tell the other caregiver, they swap medications between the first day and last day, so that's the wrong treatment (FGD 2, nursing staff, hospital 1).

| Supporting the provision of basic needs and nutrition
Family caregivers, especially from outside the major cities, often stay in or beside hospitals providing constant care and support for patients. Family caregivers often spend long periods of time away from other family and employment, sleeping in the hospitals (often on the floor) or in nearby motels. Family caregivers noted that they often assume responsibility for washing, feeding, dressing, hydration, moving, administering medications, and wound care. In addition to these basic needs, family caregivers played an important role in providing security for their family's belongings.
Notably, at times, family caregivers are ordered to leave the wards by HCPs at specific times, despite providing these essential needs.
When my wife came back from her operation she couldn't move, so for three days after the operation I had to help her with the bedpan and feed her (FDG 1, family caregiver, hospital 1). I learned all of that but I provide very little care in practice. I almost just follow doctor's prescription rather than caring. We don't bathe them or help them with washing hair or haircuts. For feeding, I just show the family members how to do it (FGD 2, nursing staff, hospital 1).
The role of providing nutrition and making nutrition related decisions was viewed as a major role of family caregivers. Within Vietnamese hospitals, meals are not commonly provided and therefore it is the responsibility of the family to provide all meals for the patients, with exception of some meals provided by charities. Family caregivers highlighted that the meals provided for patients should be nutritious and assist the patients' recovery however because of either lack of finance or lack of knowledge or nutritional advice they were unable to provide nutritious meals.

| Providing emotional support
Family caregivers describe that providing emotional support for patients as well as other family members as an integral role. Family caregivers and HCPs reported that assisting with improving the mood of patients or increasing their motivation is a daily task. There was a common belief among participants that supporting carers in this role would help patients in their recovery. Family caregivers viewed themselves as best placed to understand their family member's mood and feelings, and to know how to motivate them. However, this role put great strain on the caregiver particularly when they are managing their own emotional difficulties.

| Providing financial support
The long-term chronic nature of cancer means a prolonged and often expensive treatment process. Family caregivers play significant roles in paying for treatment, and out-of-pocket expenditure.
While insurance supports some costs, it often only covers a proportion of some treatments, and does not cover out-of-pocket expenditure. Out-of-pocket expenditure includes transportation costs, cost for buying extra medicine (traditional medicine, supplementary food and drugs) and paying for accommodation close to the hospital.
The expectation that family caregivers stay with their family in the hospital means that for many they will lose income. Given the lengthy nature of cancer treatment, this can mean extended periods of time with lost income. The financial burden of providing informal care caused extreme worry and pressure for family caregivers.
The first time, I spent up to 10 million on rent. In the early days (of hospitalization), I did not know where to find popular motels, I went to one with very bad quality. I wished there was information on the accommodation nearby in the Internet so that people like me don't have to suffer that much (FGD 1, family caregiver, hospital 1).

| DISCUSSION
The needs and challenges for family caregivers in Vietnam have been documented in other studies, as have the wider systemic challenges for patients accessing, using, and paying for cancer services. [18][19][20][21] To date, however, the specific roles of family caregivers have not been well described. This is an important gap, as how families perceive their roles and how they conceptualize "care" has significant impli- Findings from this study indicated that in a hospital setting, families act as "mediator", taking responsibility for what information should be relayed to the patient. This role is in contrast to those family caregivers in western contexts with many reporting being excluded and ill-informed in decisions. Importantly, service development must recognize the family caregiver as decision maker and include assistance for them to make fully informed decisions.
Often decisions are made by the eldest man in the family, especially when disagreement occurs. Elderly parents usually live with their sons, especially the oldest son, who is expected to take responsibility for their parents when they are old. Future interventions should recognize these gender and family dynamics and be shaped appropriately.
Due to the lack of psycho-oncology provision, families assume the role of counselor and emotional support. HCP lack formal psychological training. There is a need for further psychological training particularly in the area of oncology for health staff, as well as guidance for family caregivers in how to share bad news on diagnosis and treatment effects. Previous studies suggested that, despite the need for psychological support, there is an absence of high-quality studies to support the use of interventions to support cancer caregivers 24 and to assist in the development of supports in LMICs.

| Clinical implications
The nature of care for someone diagnosed with cancer brings significant new challenges for many family caregivers throughout Vietnam. As cancer incidence increases steadily in the country, this burden is expected to grow as is the need for specialized supportive oncology care. The nature of informal cancer care is typically longterm within a hospitalized context which in turn creates great

| CONCLUSIONS
Family caregivers play a vital and central role in the delivery of cancer care in Vietnam. This role however comes with great burden and with no formal support. Culturally and contextually appropriate interventions or resources that are cognizant of how care is conceptualized in Vietnam, and how the roles of family caregivers are perceived, should be developed.