Information needs of informal caregivers in caring and rehabilitation for dioxin victims in Vietnam

doi:10.21203/rs.3.rs-1724385/v1

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Research Article

Information needs of informal caregivers in caring and rehabilitation for dioxin victims in Vietnam

https://doi.org/10.21203/rs.3.rs-1724385/v1

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published 24 Jul, 2023

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Background: Health impacts among Agent Orange/dioxin (dioxin) victims are significant with many individuals requiring daily assistance, informal care, and rehabilitation support. This study aimed to identify the information needs of informal caregivers of dioxin victims in Vietnam.

Methods: A cross-sectional study was conducted in Quynh Phu district, Thai Binh province – an area with a large number of dioxin victims, from June 2019 to March 2020. Quantitative data were collected from 124 caregivers of victims via structured interviews. Qualitative data were collected using semi-structured interview guides with in-depth interviews (IDI) (n=36) and two focus group discussions (FGD) (n=12).

Results: The results showed that all caregivers of dioxin victims were family members, predominantly older (71.8%), 61.5 years old on average, living on low incomes (97.9%), and were farmers (80.7%). Almost all participants (96.8%) reported having information needs, particularly concerning dioxin’s harms, nutrition, dioxin-related policies and rehabilitation, and psychological support for patients. Caregivers reported that they would like to receive information via health staff counseling (85.0%), television (75.0%), and community loudspeaker (65.8%). Notably, a majority of caregivers reported the need for information regarding psychological support (70.0%). These findings are consistent with qualitative data, which identify an urgent need to provide information, especially through health staff and digital resources.

Conclusions: Many families with dioxin victims lived with little support and information, highlighting their high demand for information about care and rehabilitation. Thus, the healthcare system should promote information support, policy, and psychological support for caregivers and victims. An online support system for caregivers and victims is also recommended.

caregivers

information needs

rehabilitation

dioxin

Vietnam

During the period 1961–1972, 74,175,920 litters of herbicides, of which Agent Orange (AO) accounted for 43,332,640 litters, were sprayed over South Vietnam [1]. The term AO/dioxin and dioxin-like compounds (herein after called dioxin) include 75 individual compounds of polychlorodibenzo-p-dioxins (PCDD), 135 PCDF compounds (polychlorodibenzo-furans), and 209 PCB individual compounds (polychlorobiphenyls) [2]. The most toxic compound of the dioxin family is 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD), which was a by-product presented in dioxin and other defoliants that the US Army used during the Vietnam War. Dioxin is classified into Group I carcinogens [3] and in addition to cancer, exposure to dioxin has been linked to reproductive, developmental, and other adverse health impacts [4]. The use of AO and other defoliants during the Vietnam War resulted in devastating health implications [5-8] with approximately 4.8 million people in Vietnam exposed to dioxin [9].

Health impacts among dioxin victims are significant with many individuals requiring daily assistance, informal care, and rehabilitation support. The Vietnam Ministry of Health recognized 17 diseases associated with dioxin exposure, such as cancer, spina bifida, and mental disorders, which require long-term care and rehabilitation in the community [10]. People who are particularly vulnerable to dioxin, for instance, those individuals who have participated in the Vietnam War and residents who have been living surrounding hotspots, should be examined for associated health conditions, as recommended by the Ministry of Health, and Ministry of Labor, Invalids and Social Affairs. There is also an inter-ministerial circular on the guidance of examination for verification of diseases related to toxic chemicals dioxin among people participating in the Vietnam war by the Ministry of Health and Ministry of Labor, War Invalids and Social Affairs [11].

Despite the recognition of the severe effects of dioxin and the extensive medical and psychosocial support required, many victims’ families have been living with limited assistance and support. The current health system in Vietnam, like many other low- and middle-income countries (LMICs), is under-resourced and overcrowded. Healthcare support has been targeting those requiring acute care, such as those receiving inpatient treatments, with little support available for people living with illnesses in the community. Due to the lack of healthcare resources in Vietnam, the burden of support and care falls upon informal caregivers who are usually family members [12]. Despite managing a crucial role in the care and support of patients, informal caregivers in Vietnam often lack information and knowledge about caring and rehabilitation for patients. This lack of information and support results in caregivers feeling ill-equipped to manage the roles [13]. Besides, social policies and medical services for these caregivers have been limited [14]. In addition, there is very limited empirical evidence regarding how we can best support families of dioxin victims.

It is anticipated that providing lifelong care leads to a heavy burden on caregivers of dioxin victims including daily care and rehabilitation, financial support, emotional support, and support to access to health and social services. Evidence from other disease groups highlights the association between caregivers’ health and quality of care [15]. Informal caregivers of chronic conditions face challenges because of lacking precise information; they want to be delivered information about treatment cost, treatment methods, the prognosis of diseases, care package, and especially psychological support [16]. Understanding their demands is vital to the development of a supportive program to meet caregivers’ problems and improve the quality of care and rehabilitation for patients [17, 18].

There is a lack of empirical evidence regarding the health and needs of caregivers in Vietnam and other LMICs. The limited evidence available focuses on caregivers of dementia and cancer patients. To our knowledge, there is no scientific data regarding the needs of caregivers of dioxin victims, especially the information needs of this target group. Therefore, the study aimed to profile caregivers of dioxin victims and understand their information needs in caring and rehabilitation for these victims. This paper reported the results of caregivers’ information needs in Quynh Phu district, Thai Binh province, Vietnam, which was a district with a large number of dioxin victims in Viet Nam.

A cross-sectional study design was employed. Dioxin caregivers were invited to participate if they met the following criteria: 18 years old or over; identified as the main caregivers of dioxin victims; and able to participate in the study. The sampling of participants for the quantitative component was conducted in three stages: at the 1st stage, eight communes were randomly selected from the list of 37 communes in Quynh Phu district; at the second stage, 124 dioxin victims were recruited randomly from selected communes. The list of dioxin victims was taken from victim management records of commune health stations of Quynh Phu district, and then at the third stage community health workers contacted them via phone to invite the dioxin caregivers and other participants to participate in the study. As there is no validated instrument developed to measure the needs of dioxin caregivers, a structured questionnaire was developed. This questionnaire was based on scientific information about the information needs of caregivers of chronic health conditions and the content of care and community-based rehabilitation in Vietnam.

For the qualitative component (n=48), purpose sampling was used to recruit individuals to participate in either two focus group discussions (FGD) or in-depth interviews IDI (36) with dioxin caregivers (n=18), dioxin victims (n=10), and community-based rehabilitation staff of communes and Quynh Phu district (n= 8).

Quantitative data were entered using EpiData 3.1 software, then cleaned, and analysed using SPSS software version 18.0. Descriptive analysis was conducted. Qualitative data were transcribed verbatim and thematic analysis was used. Ethical approval was granted by the ethical committee before the implementation of the study.

This paper describes the characteristics of dioxin caregivers in a rural district of Thai Binh province, Vietnam and their needs regarding information about caring and rehabilitation for dioxin victims.

Characteristics of dioxin caregivers

There are 124 dioxin caregivers participated in this study, of which 71/124 (57.3%) participants were females. The average age of caregivers was 61.5 years old. Most of them graduated from secondary school (61.3%), and lived in rural areas (96.8%). The majority (87.9%) had a monthly low income of 1,000,000-1500,000 VND - equivalent to 43–65 USD, and the occupation of most of the study participants was farming (80.7%) (Table 1).

Table 1

Characteristics of dioxin victims’ caregivers
Characteristics		n (%)
Gender	Male	53 (42.7%)
Gender	Female	71 (57.3%)
Mean age (years old)		61.5 (32–79)
Age groups (years old)	18–44	18 (14.5%)
	45–59	17 (13.7%)
	≥ 60	89 (71.8%)
Education levels	Primary school	9 (7.3%)
	Secondary school	76 (61.3%)
	High school	18 (14.5%)
	College	11 (8.9%)
	University	8 (6.4%)
	Others	2 (1.6%)
Location	Rural area	120 (96.8%)
Location	Urban area	4 (3.2%)
Monthly income (VND)	700.000–1.000.000	13 (10.5%)
	1.000.000-1.500.000	109 (87.9%)
	> 1.500.000	2 (1.6%)
Occupation	Farmer	100 (80.7%)
	Worker	7 (5.6%)
	Officer	4 (3.2%)
	Freelancer	2 (1.6%)
	Housewife	1 (0.8%)
	Retired person	10 (8.1%)
Total		124 (100%)

All caregivers were family members of victims. They were mainly victims' wives (56.4%) or parents (28.2%) (Table 2).

Table 2

Relationships between caregivers and dioxin victims
Relationships between caregivers and dioxin victims		n
Wife	70	56.4
Parents	35	28.2
Siblings	8	6.5
Other relatives	11	8.9
Total	124	100

Information needs of caregivers in caring and rehabilitation for dioxin victims

The information needs of caregivers in caring and rehabilitation for dioxin victims were reported, including current channels of information, unmet information needs of caregivers in caring and rehabilitation for dioxin victims in regards to contents and forms. 120 caregivers reported needing general information needs, accounting for 96.8% of respondents (Table 3).

Table 3

Information needs of caregivers in caring and rehabilitation for dioxin victims
Information needs of caregivers in caring and rehabilitation for dioxin victims (N = 124)	n	%
General information needs	120	96.8
No need for information	4	3.2

Current source of information about caring and rehabilitation for caregivers of dioxin victims

Caregivers identified several resources currently available for caregivers specific to dioxin. Caregivers reported that information from health staff counseling had the highest rate of providing sufficient information compared to others (32.2%). A sufficient level of accessing resources via family members or friends (9.7%), television (21.8%), online newspapers (11.3%), and radio (8.9%) were reported. The majority of respondents reported an acceptable level of accessing information about caring and rehabilitation via the radio (77.7%). In the study, 58.1% of caregivers reported not having information issues from the website due to unavailability. It is mainly due to the lack of access to the internet and/or no information on dioxin made available to them (Table 4).

Table 4

Providing information about caring and rehabilitation for AO/dioxin caregivers
Providing information (%)	Sufficient	Acceptable	Few	Not available
Health staffs’ counselling	40 (32.2)	73 (58.9)	10 (8.1)	1 (0.8)
Family members or friends	12 (9.7)	60 (51.6)	41 (33.1)	7 (5.6)
Training courses	6 (4.9)	38 (30.6)	30 (24.2)	50 (40.3)
Leaflets or booklets	11 (8.9)	43 (34.7)	42 (33.9)	28 (22.5)
Radio	11 (8.9)	96 (77.4)	12 (9.7)	5 (4.0)
Television	27 (21.8)	86 (69.3)	8 (6.5)	3 (2.4)
Online newspapers	14 (11.3)	45 (36.3)	21 (16.9)	44 (35.5)
Social networks	9 (7.3)	42 (33.9)	25 (20.1z)	48 (38.7)
Website	4 (3.2)	29 (23.4)	19 (15.3)	72 (58.1)

Findings from qualitative interviews supported the quantitative findings above demonstrating that the most common way of receiving information was from health staff, followed by television and radio. Leaflets or the internet were much less likely to be available, thus not being accessed by most participants in the study.

There are different channels we can get access to, TV or radio from the commune, they talked about Agent Orange and support for dioxin victims. The commune health staff also came to provide counseling sometimes. I found no information on the Internet for dioxin victims (FGD 3, caregiver, female).

Those caregivers who had a higher education level reported that they often choose official channels of communication to get information about dioxin-related policies, and update programs for dioxin victims. In addition, reading digital or printed newspapers, or watching television was discussed as potential sources of information. Yet, it was reported by most of the participants that these resources do not have information on caring and rehabilitation.

I often read newspapers, watch TV, and watch VTV1 programs, or I read digital newspapers, but not much. The leaflets are not available at commune health stations on this issue (FGD 4, caregivers, female).

Caregivers reported that they were unable to access information related to supporting victims from the internet, those who had attempted to obtain online intervention described it as very limited. Furthermore, the caregivers of victims are often elderly, and there is a small number of them using the Internet or smartphones.

My wife used it only recently, we haven’t got that (internet) before, for us, at this age, we do not use it much, that’s the first thing, the second thing is that it is not available in a lot of areas. Actually, I didn’t see anything about dioxin on the internet (FGD 6, dioxin victim, male).

Find out information about dioxin or rehabilitation for the victims... Yesterday, I opened but nothing was found (FGD7, caregiver, female).

Besides the above sources of information, participants also highlighted the need for regular training courses to disseminate knowledge on the practices of caring and rehabilitation as well as up-to-date information on victims have been frequently shared by different participants in this study. Dioxin caregivers want to train the victims at home and therefore they expressed their need for guidance materials in care and rehabilitation. Training programs were expressed by victims and caregivers in the study as an effective way of providing information for caregivers.

It is good to train the children because they are handicapped and the health professionals who have those skills and it is easy for them to share with us. If the parents do not know, how can they help their children, how can they show the children (victims) do exercises correctly? That’s why as family members they need those materials. The materials are helpful for the health collaborators as well (FGD6, caregivers, victim, male).

Information needs on information contents

As reported in Table 5 the majority of these participants (75.8%) wanted information about caring for dioxin victims, desired psychological support (70.0%), and needs about dioxin’s harms (60.8%). Information needs on support policies, nutrition, and rehabilitation practices at home were all high. The information needs from health staff and counselling on genetic/hereditary issues of dioxin victims were high (54.2%).

Table 5

Details of information needs of caregivers in caring and rehabilitation for dioxin victims
Detailed information needs in caring and rehabilitation (N = 120)	n	%
Dioxin’s harms	80	66.7
Common types disability	40	33.3
Caring for AO/dioxin victims	91	75.8
Nutrition for AO/dioxin victims	77	64.2
Rehabilitation practice at home for AO/dioxin victims	66	55.0
How to make assistive and orthopedic devices	30	25.0
Policy information for AO/dioxin victims	73	60.8
Genetic counselling for AO/dioxin victims	65	54.2
Job counselling for AO/dioxin victims	34	28.3
Information about healthcare facilities for dioxin victims	65	54.2
Psychological support information	84	70.0
Ways to connect AO/dioxin victims’ association	46	38.3

Qualitative data supported quantitative findings and highlighted several issues including information on policies for victims, medical care and treatment, caring in daily lives, nutrition for victims, rehabilitation technique (rehabilitation exercises) training for patients and caregivers, psychological support, and financial support. Most of the focus group discussions and in-depth interviews indicated that dioxin caregivers were in urgent need of information.

Information needs on support policies for victims

Caregivers reported the need to get updated specific policies that support dioxin victims and caregivers. These policies should relate to financial support, or health insurance, social insurance support, or other government priorities that are available to them as victims of the war. Most victims and their families need support from the government as they are poor, and many are incapable of having jobs. The following quote from a victim illustrates the limited financial support from the government.

I often tried to find out about the policies of the state regarding dioxin and updates of the support policies with the hope that we can get something. But the information is very scarce (IDI3, victim, male).

At the moment, my support level as F1 generation (of dioxin victim) is 974.000 VND per month. My dad was verified and recognized as a dioxin victim and I was verified as a person who suffered from the toxic chemical. The F2 generation people can get 540.000 VND per month. I don't have any other support (IDI4, victim, female).

The health insurance policy supports dioxin victims with 100% health insurance coverage. Health insurance could cover the payment in case the patient has a disability verification certificate. As reported, they used health insurance for healthcare purposes.

Regarding health insurance, I had 100% prevention of sickness coverage, but I only used it for common illnesses, aching in the limps so I get some medicines home to take. (IDI5 victim, male).

In some cases, the poor families could get subsidy support for public schooling.

My family was recognized as a poor household, so my daughter can have some reduction in tuition fees at the school (IDI 9, caregiver, female).

Needs for information on medical care and psychological support

Victims and their caregivers frequently reported a need for medical support and services, apart from information regarding health insurance as mentioned above. Caregivers reported that dioxin patients need regular health check-ups and better treatment with medications. Some caregivers in the study shared that families affected by dioxin required psychological support. Many participants are aware that dioxin affects the health of victims and creates mutations in their genes. Most families and dioxin reported having constant concerns about the future of their next generations if they get married. The psychological burden is obvious among caregivers in this study. Commonly caregivers reported that victims find it difficult to cope with daily life, particularly concerning mood or anxiety. Caregivers reported a need for psychological services to assist patients to manage these difficulties.

... diagnosing diseases and all that we need to rely on the health sector and then we need projects that have regular health checks at communes for the victims, first is counselling, and second is providing partial medical support for us (FGD 2, caregivers female).

I don't know if my son gets married, his children will be normal or not. He has the first child, and then the second child with disabilities, I still hope the third child will be normal, not like the first two. I am worried all the time (IDI 10, victim, male).

Needs for information on daily care and rehabilitation at home

The need for information on daily care, including basic care, nutrition, and exercises was commonly mentioned during interviews with caregivers. Most caregivers did not have much guidance or were trained to care for victims by health professionals such as daily care or providing psychological support for victims. Some victims shared that they find it a heavy burden because they have to look after the other victims all the time who are their younger relatives.

Yes, it is great if the caregivers and victims know about what food they should eat, how to care for them, which exercises they should follow, and medications as well (IDI2, victim, male, 73 years old).

I find it difficult to care for my grandson, he’s running around all the time, and sometimes he ran out of the house, and I could not follow him. My life was so miserable you know [cry] (FGD 2, victim and caregiver, male, 79 years old).

Caregivers expressed their desires to get information and have training regarding rehabilitation so that they can guide their family members who are victims to do rehabilitation exercises at home daily. Caregivers reported that this information should be delivered by rehabilitation specialists or trained health professionals. Due to the complex needs of victims reported by caregivers, they were concerned that they did not provide the correct level of care for them. Providing hands-on practices is considered the most effective way of transferring knowledge and skills to victims and their caregivers. This manner was strongly supported by caregivers, victims, and health staff who participated in the qualitative interviews. As one caregiver in a focus group discussion illustrates:

I think I need the knowledge of rehabilitation to do for the victims... In general, it’s great if someone could come to show/teach us how to guide my son to do rehabilitation exercises at home. We don't have any machines to help so it’s better if we can do exercises by ourselves (FGD 7, caregivers, female).

Apart from the need for health staff to provide rehabilitation training for caregivers and victims, some participants mentioned the need for having assistive devices at home to alleviate the caring burden for caregivers at homes, such as wheelchairs, or crutches:

My opinion is that I wish to have the equipment to rehabilitate for families’ members. It’s the best if the government or hospitals periodically provides training for people who are directly involved in caring for the victim (FGD1, caregiver and victim, female).

It is very important to have periodic training classes on how to provide home care, and rehabilitation at home for victims (FGD 2, caregiver and victim, male).

Needs for information on financial support for victims and caregivers

Caregivers commonly identified the need for financial support as many families affected by dioxin are very poor and cannot work (due to comorbidities). In the context where both victims are not able to earn their living, the financial support policy is of significant importance. Caregivers suggested that financial support could be in the form of providing more subsidies for health insurance or providing better monthly allowances.

We need the government support in finance so that we can afford to go to hospitals. Agent Orange victims need a lot more financial support. (IDI 4, victim, male).

However, one participant shared that he had to refuse the government support for his daughter who is a dioxin victim (second generation) due to the concern that it will affect his daughter’s marriage in the future. It is a common belief that it is more difficult for girls than boys to get married if they have health conditions that are related to hereditary problems, and dioxin will make the situation worse for girls.

Both my son and my daughter can get the allowance from the government for dioxin-affected people but I didn't get it for my daughter because I am concerned that my daughter cannot get married if people know she is a dioxin victim. I only get it for my son (IDI 9, male, victim and caregiver).

Needs for information from different channels/forms

As reported in the survey findings, 120/124 caregivers had general information needs with various information channels. The study investigated the three most favorite forms of information that those dioxin caregivers desired. The most chosen information form was counseling by health staff (85.0%). The percentages of caregivers interested in receiving information via television and radio channels were 75.0% and 65.8%, respectively (Table 6).

Table 6

Demand for information forms of caregivers in caring and rehabilitation for dioxin victims
Demand for information forms	n	%
Medical staffs’ counselling	102	85.0
Family members, friends	39	32.5
Training courses	38	31.7
Printed materials	48	40.0
Radio	79	65.8
Television	90	75.0
Internet newspapers	9	7.5
Social networks	11	9.2
Website	7	5.8

In this study, participants were in favour of having advice or counselling from health professionals, followed by TV and community loudspeakers. These findings were consistent with the findings mentioned earlier on the current situation of information access (Table 3) where counselling from health staff, TV, and loudspeakers are reportedly the most accessible channels. Caregivers often want to get information from rich-information and accessible sources, so the need to provide this along with advice from health workers is considered appropriate. This is the most effective communication as shared by several caregivers participating in this study.

I think I need the knowledge of rehabilitation for the victims... In general, regarding rehabilitation, if there are health professionals coming our houses to show rehabilitation exercises, they will recover. We want to have machines to do exercise at home but we could not afford them (FGD 1, caregivers, female).

The needs for other printed materials, such as books, booklets, newspapers, and leaflets were also mentioned as a channel of information to which participants want to get access. However, these methods are not all available or accessible to victims and caregivers in many cases.

The printed documents can be sent to the communes for caregivers for further information, but now we all don't have that kind of materials at localities (FGD 2, caregivers, male).

Among 124 survey respondents, 41.1% found it necessary or very necessary to build a website with information and skills for caring and rehabilitation (Table 6).

Information accessed from the internet via smart TV, computer, or smartphones was highlighted in the qualitative data. However, this channel was not common among caregivers in the study. In explanation of this situation, two reasons were given: first, participants did not use the internet frequently as the majority of them were elderly; and second, the information regarding care and rehabilitation on the internet was still very limited. Some participants highlighted the advantages of using internet to get information and skills for caregivers.

My house has internet, I can access through TV, but most of the time I actually could not find any information on dioxin or for dioxin victims on the internet (FGD 2, caregivers, male).

We can use the website to get information about dioxin for better prevention of sickness and to share information with others in the same situation, neighbours, and community (IDI 2, victim, male).

It is understandable that the information on the internet should be visualized with pictures, videos and should be accessible at any time.

The information on the website should have pictures so that we can easily understand it. If we could hear and see regularly, we won't forget. The pictures should be arranged in a way that it’s easy to understand for normal people, if it’s complicated it’s only appropriate for like higher education people, we will not be able to understand (IDI2, victim, female).

This is the first study to investigate the information needs of caregivers of victims affected by dioxin in Thai Binh province, Vietnam. The findings highlight the absence of supportive information and the urgent requirement for the development of supportive systems. The information needs in this study, however, does not include information needs to take care for themselves as caregivers.

General characteristics of caregivers of dioxin victims

Findings of this study identify these caregivers of dioxin victims are more likely to be elderly female family members, particularly wives of the victims. This finding contrasts with other Vietnam caregiver studies of disabilities, which identify these caregivers are more likely parents. However, dioxin caregivers may differ in profile as dioxin victims are more likely to be males who were exposed to dioxin during the Vietnam War. This finding is of importance for the development of information and support that should be targeted toward an older population.

Regarding characteristics of the study participants, 100% (n = 124) are the victims’ families, and female accounts for 57.3%. Most of the caregivers are elderly, with an average age of 61.5 years old. The majority of participants are wives of victims, accounting for 56.4%. This finding is different from a study by Riewpaiboon and colleagues (2014) on caregivers for people with disabilities in Vietnam. In their study, caregivers were parents and accounted for 49% of participants, while caregivers who were the spouses represented only 34%. The potential reasoning for this difference is that Riewpaiboon’s study participants were caregivers for people with all different types of disabilities, such as mobility disability, mental or intellectual impairments and both mobility and mental impairments [17]. Participants in the current study, on the other hand, are mostly caregivers of dioxin victims who ar on the needs of providing information for caregivers of cancer patients males and exposed directly to dioxin in the Vietnam War, followed by participants who were parents of dioxin victims, accounting for 28.2%. It is because the inclusion criteria for dioxin victims in this study also included the second and third generations of the victims directly exposed to dioxin during the Vietnam War. Therefore, providing information support should prioritize female elderly (of the first generation) and parents (of the second generation) of victims.

In addition to caregivers being older and female, many caregivers report living with a low income (98.0%) and low educational level (68.8%). These characteristics may represent the rural life of many families. This study identifies that the needs of dioxin caregivers are high and specifically relate to the need for information and support to care for patients. Most caregivers shared that they need more information about basic, daily caring skills as well as rehabilitation for their relative victims. The information needs are clear, with 96.8% sharing that they lack and need more information as such. Caregivers for dioxin victims have crucial roles in care and support for victims. This result is similar to the research on the need of providing information for caregivers of cancer patients in Vietnam, showing that caregivers have multiple roles in supporting the patients, making decisions related to care and treatment for patients. Their burden of care required information related to care, treatment assistance, medical and social services for patients [18].

Information needs on care and rehabilitation of dioxin victims

This current study showed clear evidence of the information needs of caregivers for dioxin victims in Vietnam from qualitative interviews. This finding is consistent with quantitative data with 96.8 caregivers reporting their needs to have information and skills needed to provide care and rehabilitation for dioxin victims. However, most caregivers in the study agreed that the information for them is very limited. A previous study also highlighted the need to provide hands-on, effective skills training for caregivers including those who provide care for dioxin patients [19].

Information needs on financial policy support and health insurance support

It is very common in the interviews that participants want to gain more updated information about the support policies for dioxin victims. Financial support or subsidization of health insurance are often shared in the interviews. Even though victims can have a small monthly allowance, it could considerably alleviate the burden on their families.

The current policy in Vietnam stipulated that only the victims and the second generation (children of people directly exposed to dioxin) can get benefits from the government policies [20]. Veterans who have a 61% reduction in working ability (severity level) can get health insurance for free. In Vietnam, caregivers of dioxin victims have no support from the government, except for those caring for people with very severe disabilities and completely depend on caregivers - they can have a small monthly allowance.

Information needs on daily care and rehabilitation

The contents of information that caregivers need to know are how to provide daily care for the victim, financial support (monthly allowance and health insurance subsidy), information on support policy, nutrition, harms of dioxin, and rehabilitation exercises to guide victims at home for the victims. In fact, caregivers who are family members in Vietnam have almost no support services, nor are they trained in care and rehabilitation for victims. Needs for information on how to provide psychological support for caregivers and victims such as sharing stories from other caregivers and families, coping with worries about the future of the next generations, and hereditary issues are also unmet.

Channels of information: health staff counseling and online support

Regarding the information channels, the study highlighted the importance of providing information through health care professionals, TV, radio and expanding the opportunities to have digital support for caregivers and their victims is appropriate. Most participants wanted information on care and rehabilitation for victims from counseling by health workers (85.0%). This result is similar to findings of a previous study that highlighted that caregivers preferred to be informed by and discussed with health care professionals [21]. Caregivers want health professional support not only for information but also for receiving other support from medical staff so that they could understand the information they receive properly. Counseling from health workers is preferred by dioxin victims because they can interact with and have explanations from health care professionals. The study showed the important roles and necessity of providing training for health workers at the grassroots level to provide counseling and training for caregivers in the community on care and rehabilitation.

The study suggested that online website for caregivers and victims should be considered. Although it might not be appropriate for most caregivers in this study (most of them are elderly and might not be familiar with finding information on the Internet), providing online support could be effective for the second or third generations of victims. In particular, during the COVID-19 pandemic time, digital support has been promoted. Previous studies showed the effectiveness of online support for patients and caregivers as knowledge and skills training could be made available via the internet. Sharing from peers, or people with the similar situation could be a helpful and informative coping strategy, thus providing psychological support for caregivers [14]. Moreover, the rate of people using the Internet in Vietnam is increasing high (70%) [22]. This study only focused on the needs of caregivers regarding care and rehabilitation for dioxin victims, further studies are needed to have a better understanding of the personal needs of these caregivers.

This study showed the high need for information for caregivers of dioxin victims across different generations. The information helps caregivers (who experience a significant burden in caring for the victims) with knowledge and skills for providing better daily care and rehabilitation for victims and themselves, as a large number of caregivers are also dioxin victims. The information on the support policies (i.e. financial support in monthly allowance or health insurance support) for dioxin victims especially those who have severe disabilities and lose working abilities is highly needed. Training for health professionals at the grassroots level who in turn will train caregivers in communities should be promoted, apart from other common modes of information delivery like TV, radio, and leaflets. Findings suggest the potential of developing an online support system for caregivers, victims and health staff that provides knowledge, skills training with videos, pictures, and story sharing.

AO: Agent Orange; IDI: in-depth interviews; FGD: two focus group discussions; LMICs: low- and middle-income countries.

Acknowledgments

The authors would like to acknowledge the support of the participants in dioxin-affected areas and the Medical Services Administration Department, Ministry of Health, Vietnam. We would like to thank Mr. Aidan Mahoney at Princeton University for English editing the paper.

Fundings

This study was sponsored by Hanoi University of Public Health, Vietnam in the project “Healthcare and rehabilitation for toxic chemical poison victims/dioxin in the period 2018-2021”. No fundings were provided for the planning, writing, or submission of the manuscript.

Availability of data and materials

Based on the consent form indicating that the data will not be shared publicly for confidentiality, we will not share our data with the public.

Conflict of interest

The authors declare there was no conflict of interest in producing this paper.

Ethical Approval

Ethical approval was received from the Institutional Review Board in Vietnam of Hanoi University of Public Health in Vietnam.

The study received ethics approval from the Hanoi University Institutional Ethical Review Board (Approval number 489/2019/YTCC-HD). All primary data collection was conducted after obtaining informed consent from each participant and ensuring the reporting of results protected the participants’ identities. In this study, all methods were carried out in accordance with relevant guidelines and regulations.

Author contributions

HTH and BLC conceived and designed the study. NTHL, NMA, NTH coordinated data collection and HTH, BLC, NTH analysed the data. HTH, BLC and NTH wrote the first draft of the manuscript. All the authors made critical revisions and agreed on the final versions of the manuscript. OS, DCH, TTTH, TNN, GC, BTTH and HVM reviewed and revised the manuscript, and HTH and BLC approved the final draft for submission, which was done by BLC.

Author details

¹Hanoi University of Public Health, 1A Duc Thang St., Bac Tu Liem District, Hanoi, Vietnam.

²Queen’s University Belfast, Medical Biology Centre, 97 Lisburn Road Belfast, Northern Ireland. ³E Hospital, 89 Tran Cung St., Cau Giay District, Hanoi, Vietnam.

⁴Medical Services Administration Department, Ministry of Health, 138A Giang Vo st., Ba Dinh District, Hanoi, Vietnam.

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No competing interests reported.

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published 24 Jul, 2023

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Editorial decision: Major revision
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Information needs of informal caregivers in caring and rehabilitation for dioxin victims in Vietnam

Status:

Journal Publication

Version 1

Abstract

Introduction

Materials And Methods

Results

Characteristics of dioxin caregivers

Information needs of caregivers in caring and rehabilitation for dioxin victims

Information needs on support policies for victims

Needs for information on medical care and psychological support

Needs for information on daily care and rehabilitation at home

Needs for information on financial support for victims and caregivers

Discussions

General characteristics of caregivers of dioxin victims

Information needs on care and rehabilitation of dioxin victims

Conclusions

Abbreviations

Declarations

References

Additional Declarations

Status:

Journal Publication

Version 1