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

Abstract

Objectives: 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. Methods: Semi-structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis.Results: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end-of-life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input. Conclusions:Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho-oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance.

“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

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Digital support for caregivers of patients with non-communicable diseases during COVID-19: Lessons from a cancer case study in Vietnam

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“…Prior to the outbreak, the burden of cancer on informal caregivers was already demonstrated to be significant [ 2 ]. In the context of COVID-19, this burden will increase.…”

“…Non-communicable diseases (NCDs) cause more than 71% of global deaths, of which 77% were reported from low- and middle- income countries (LMICs) [ 1 ]. In LMICs, such as Vietnam, this population is largely dependent on informal caregivers (usually family caregivers) who provide essential care without information or sufficient support [ 2 ] and do so whilst managing complex needs. As the number of COVID-19 cases rapidly increases in Vietnam and with social restrictions, many caregivers are forced to provide complex care and support at home with limited health literacy and little contact with the health service.…”

“A disease that God has given me” patients and caregivers’ perspectives on diabetes in southeastern Tanzania

“…Previous studies provided necessary information on the prevalence of diabetes, self-care practices and adherence to medicines [ 12 , 31 ] however, they do not help us to understand more about the patients and their caregivers’ perspectives on diabetes. A dyadic approach is required to understand patient and their caregiver perspectives on a disease because this is critical in shaping self-care practices especially for chronic conditions [ 32 , 33 ] including diabetes that requires long-term medical attention and care. The caregiver of a person suffering from NCDs undertakes multiple caring roles ranging from helping patients to access basic health care needs and making treatment decisions, to providing emotional and psychological support that have a bearing on a patient’s quality of life and wellbeing in general.…”