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Volume 16, Issue 4 (2024)
3 2024, 16(4): 347-353 |
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Received: 2024/10/5 | Accepted: 2024/11/12 | Published: 2024/11/28
Received: 2024/10/5 | Accepted: 2024/11/12 | Published: 2024/11/28
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Sinh N, Hoa L, Hoang T, Bach N. Primary Caregivers' Attitudes Toward Home-Based Rehabilitation of People with Disabilities in Rural Vietnam. 3 2024; 16 (4) :347-353
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1- Department of Rehabilitation, Faculty of Sub-Specialties, Thai Nguyen University of Medicine and Pharmacy, Thai Nguyen, Vietnam
2- Department of Environmental Health-Occupational Health, Faculty of Public Health, Thai Nguyen University of Medicine and Pharmacy, Thai Nguyen, Vietnam
3- Department of Epidemiology, Faculty of Public Health, Thai Nguyen University of Medicine and Pharmacy, Thai Nguyen, Vietnam
4- Faculty of Pharmacy, VNU, University of Medicine and Pharmacy, Hanoi, Vietnam
2- Department of Environmental Health-Occupational Health, Faculty of Public Health, Thai Nguyen University of Medicine and Pharmacy, Thai Nguyen, Vietnam
3- Department of Epidemiology, Faculty of Public Health, Thai Nguyen University of Medicine and Pharmacy, Thai Nguyen, Vietnam
4- Faculty of Pharmacy, VNU, University of Medicine and Pharmacy, Hanoi, Vietnam
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Introduction
A person with a disability is a person who has a defect in one or more body parts or a functional impairment manifested in the form of a disability that makes work, daily life, and study difficult. Disabilities commonly cause several harmful effects, such as reduced physical and mental health, decreased quality of life, … [1, 2]. It is estimated that 1.3 billion people, or 16% of the world's population, currently have a disability [3], and 2.4 billion people need rehabilitation services [4-6]. Population growth, accelerated aging, complex disease patterns, the rise of chronic diseases, and advances in life-saving medicine suggest that these numbers will increase [7]. In Vietnam, according to the results of the 2019 population and housing census, the rate of people aged five and over with disabilities is 3.7%, an increase of 0.3% compared to 2009. Of the total number of people with disabilities, the highest number of people with lower mobility, Followed by cognition, upper mobility, Psycho-social, and communication disabilities. There are nearly 5 million households with disabilities; one out of every five households has at least one person with disabilities [8], and 75.7% of the total persons with disabilities population living in rural areas [9]. Social inclusion and community participation of people with disabilities is a concept that runs through current policies for people with disabilities in the world, as well as in Vietnam [1, 4].
In the family, parents care for their children, husbands and wives care for each other, children care for their parents, and when a disability occurs, family members care for each other. According to statistics from the US Census Bureau in 1997 and the National Alliance for Caregiving and AARP in 2004, at least 80% of primary caregivers for people with severe disabilities are family members [10, 11].
In Vietnam, according to traditional culture and medical resources, the family environment is the central place for the rehabilitation of people with disabilities, and family members are the ones who support and care for them. Home-based rehabilitation is considered an economical and effective method in the integration process of people with disabilities through the use of available resources at home and in the community. However, improving the condition of people with disabilities is a complex and challenging task.
There are many barriers to improvement, such as economic status, needs, and aspirations of people with disabilities [4, 12-14]. In addition, improving the condition of people with disabilities also depends on the knowledge, attitudes, and skills of family members of people with disabilities, especially the primary caregiver [15]. The primary caregiver is the person who regularly supports people with disabilities in performing activities in life and daily activities, helping people with disabilities have the opportunity to integrate and reintegrate into society. Identifying attitudes toward rehabilitation among primary caregivers of people with disabilities is essential in developing effective rehabilitation intervention programs to improve the health of people with disabilities. Studies on the attitudes of primary caregivers towards rehabilitation for people with disabilities have received attention in developed countries, while in developing countries, it is still limited [9]. The study was conducted to describe the attitudes of primary caregivers towards rehabilitation for people with disabilities in rural Vietnam and to analyze some related factors.
Instrument and Methods
This cross-sectional study was conducted on primary caregivers of people with disabilities from December 2017 to July 2018 in a rural area of Thai Nguyen province, Vietnam. The sample number was estimated 148 by the WHO formula and 219 individuals were selected by purposive sampling. For this purpose a list of people with disabilities in 4 research communes was prepared. Then, interviews with primary caregivers of people with disabilities were conducted.
The questionnaire was made according to the content of the “Community-based rehabilitation program”. This questionnaire was developed in 4 steps including: Step 1) The questionnaire was developed based on the content of the “Community-based Rehabilitation Program” (The program was established under Decision No. 4039/QD-BYT of the Ministry of Health of Vietnam). Step 2) the face value, content and structure of the questionnaire were evaluated using qualitative methods through the opinions of 3 rehabilitation experts and 30 primary caregivers of people with disabilities. Step 3) the reliability of the questionnaire was also evaluated (with a resulted value of 0.68). Step 4) The questionnaire was adjusted according to the opinions of experts and research subjects. The result of the questionnaire had 10 items.
. The study used this tool which included 10 questions with a 5-level Likert scale (1=strongly disagree, 2=disagree, 3=unclear, 4=agree, and 5=strongly agree). Each correct answer is scored 1 point and each incorrect answer is scored 0 points. Classify good, average, and poor attitudes according to the total number of correct answers/total scale points, with corresponding scores: good ≥80%, 80%> average >60%, and poor ≤60%.
After obtaining the required permissions, interviewers were trained and participated in a pilot study of the toolkit to help them collect consistent data. All research subjects were introduced to information about the study and asked and given a consent form if they agreed to participate. The researcher and interviewers guided each question for the research subject to answer. Each interview lasted 10-20 minutes.
Data were analyzed using Epidata 3.1 and SPSS 20 software. Statistical analysis was done by univariate logistic regression at p<0.05 significance level.
Findings
The primary caregivers of people with disabilities had a mean age of 50.2±14.6 (10 to 87 years old), of which 67.6% were female, 55.7% were ≥50 years old, 56.6% were Tay ethnic group, 64.9% had secondary education or higher, and 75.3% worked as farmers (Table 1).
Table 1. The frequency of general characteristics of caregivers of people with disabilities (n=219)
The primary types of disability were motor (51.6%) and intellectual (36.5%). State subsidies were the primary source of income for people with disabilities (83.6%). Regarding marital status, 42.5% of people with disabilities were unmarried, and 38.4% lived with their spouse (Table 2).
Table 2. The frequency of some disability characteristics of people with disabilities (n=219)
Most participants agreed and strongly agreed with the need for rehabilitation for people with disabilities (93.1%), the need for rehabilitation to be carried out in the community (86.3%), the need for primary caregivers to have good knowledge of rehabilitation (85.4%), and the need to care for people with disabilities both physically and mentally (97.3%). The results of classifying the attitudes of primary caregivers of people with disabilities at a good level were 70.8%, an average level of 16.9%, and a poor level of 12.3% (Table 3).
Table 3. Attitudes of primary caregivers toward rehabilitation for people with disabilities
There was no relationship between age, gender, education level, occupation, relationship with people with disabilities, and the attitude of the primary caregiver towards rehabilitation for people with disabilities (p>0.05). Ethnicity was related to the attitude of the primary caregiver of people with disabilities (p<0.05). The primary caregiver of Kinh ethnicity had more attitude towards people with disabilities than the primary caregiver of other ethnic groups (Table 4).
Table 4. Univariate association with the view that rehabilitation for people with disabilities should be carried out in the community
Discussion
The goal of many countries in the world, including Vietnam, is to carry out early detection and early intervention of disabilities to reduce the impact of disabilities, overcome the consequences of disabilities, and help people with disabilities reintegrate into society through rehabilitation activities, especially in the community. Rehabilitation activities in the community for people with disabilities depend on many factors, affecting the quality and results of rehabilitation for people with disabilities, such as the educational level of the primary caregiver of the disabled person, the relationship of the primary caregiver with the disabled person, access to rehabilitation services, of which, significantly, the attitude of the primary caregiver for the disabled person [16].
This study aimed to describe the attitudes of primary caregivers towards rehabilitation for people with disabilities in rural Vietnam and to analyze some related factors. The study discovered some demographic characteristics and attitudinal characteristics of primary caregivers of people with disabilities and identified factors related to the attitudes of primary caregivers of people with disabilities in rural areas of Northern Vietnam.
Research results show that the primary caregivers of people with disabilities are mainly their parents aged ≥50 years. They are mainly female, Tay ethnic group with high school education or higher, and farming occupation. The characteristics of the study subjects are consistent with the study area, which is the rural area of Northern Vietnam. In this area, the Tay ethnic group is densely concentrated [8]. The primary caregivers are mainly farmers with a high school education or higher. This would suggest that future intervention studies aimed at improving knowledge about Rehabilitation for people with disabilities in similar areas should pay attention to intervention content appropriate to the educational level and occupation of the research subjects. This result is similar to the research results of author Zheng et al. published in 2016 in China, showing that over 90% of the primary caregivers are family members [17]. This similarity comes from the cultural similarities of East Asians. In Vietnam, family members play an essential role in caring for and supporting people with disabilities at the family level [18]. Family and relatives are the first places that can be mobilized to care for family members with disabilities. In the relationship with people with disabilities, the majority are mothers of people with disabilities, showing that the attachment of the caregiver to people with disabilities will be long-term, limiting the change and resignation of the primary caregiver for people with disabilities. This is an advantage of the intervention process, as it improves knowledge, attitudes, and practices on rehabilitation for the primary caregiver. A family member for a caregiver is the simple economics of the situation. A professional caregiver can easily be beyond a disabled person’s budget. Another reason for using a family member as a caregiver is that care is a personal entity, and people can feel much more at ease with a family member doing things for them than a stranger.
The causes of disability of people with disabilities in the study were mainly due to illness and congenital causes—people with disabilities with motor disabilities, intellectual disabilities, and hearing and speech disabilities. According to Hung et al., in Vietnam, when implemented across ecological regions across the country, people with disabilities needing rehabilitation in the group with motor disabilities accounted for the most significant proportion of people with disabilities treated at provincial and district hospitals, the rates in 2018, 2019, 2020 were 72.6%, 77.2%, and 73.0% respectively; Rehabilitation in the group with hearing and speech disabilities, cognitive dysfunction and other types of disabilities had a lower rate [19].
Family members of people with disabilities, especially the attitudes of primary caregivers, have a significant impact on the quality of care for people with disabilities. Primary caregivers are the second focus of most studies on attitudes toward people with disabilities. Positive attitudes from primary caregivers often lead to better support and more positive experiences for people with disabilities. However, primary caregivers can sometimes exhibit negative attitudes due to factors such as stress, lack of understanding, or social stigma associated with disability, which can lead to challenges in the caregiving process. Research by Woo et al. showed that the lack of positive attitudes from primary caregivers led to a lack of support to meet the needs for activities of daily living support for people with disabilities [20].
The results of the study showed that most primary caregivers had positive attitudes in agreement and strongly agreed with the answers related to rehabilitation for people with disabilities at home: Rehabilitation for people with disabilities is necessary; Rehabilitation must be carried out in the community; Primary caregivers needing good knowledge about rehabilitation and needing to care for people with disabilities both physically and mentally. Studies have found that community-based rehabilitation is a support tool that allows for the continued care of people with disabilities/patients in their familiar living environment, helping them continue their activities, improving their quality of life, and reducing the burden on caregivers [21-23]. Stolee et al. found that home-based rehabilitation increases the effectiveness of treatment for people who do not have access to inpatient or institutional care or can supplement such care [24]. Two Cochrane reviews have found that in‐person home‐based rehabilitation may be as effective as institutional‐based rehabilitation [25, 26]. The proportion of primary caregivers with a general attitude toward rehabilitation for people with disabilities at a good level was 70.8%, with an average level of 16.9% and a poor level of 12.3%. This result is higher than the results of some other studies: The study of Torabi et al., the mean score of caregiver attitude was 108.77±6.20, with 50.7% of primary caregivers having a good attitude in caring for people with disabilities and 49.3% of primary caregivers having an average attitude [27]; Shah et al. study showed that the percentage of caregivers with good attitudes toward patients was 48.3% [28]. Primary caregivers of people with disabilities in this study also expressed positive attitudes toward the rehabilitation of people with disabilities.
Primary caregivers of people with disabilities all agreed and strongly agreed that the issue of caring for people with disabilities is complicated and requires many people to do it. Rehabilitation for people with disabilities will be a burden for their families because the main source of income for people with disabilities is mainly based on the state budget. However, they believe that people with disabilities can recover if they receive good rehabilitation training and have equal rights in social activities. This result is also consistent with the reality of Vietnamese customs and practices; everyone in the family is willing to support people with disabilities in reintegrating into the community, improving the quality of life of people with disabilities. Thus, this is a favorable factor for implementing rehabilitation for people with disabilities in the community.
One of the barriers for people with disabilities in achieving equality in society is negative attitudes towards people with disabilities. Some families act as a form of implicit protection for people with disabilities in society by limiting their contact with the outside world. At the same time, they increase their nurturing and care for people with disabilities to create a safe environment within the family, which is a very stressful choice [18].
95.4% of primary caregivers agree and strongly agree that people with disabilities are normal citizens and have equal rights in social activities. This is a positive attitude. They are patient, sympathetic, and respectful and focus on the needs and abilities of individuals to promote independence and quality of life for people with disabilities. Primary caregivers believe that people with disabilities can recover if they are well-trained in Rehabilitation and arrange suitable jobs for people with disabilities within their working capacity.
Naghavi & Zamani-Forooshani showed that while negative consequences of caregiving existed, coping strategies and adaptation could help caregivers move from the difficult stage of accepting disability to adaptation and positive, caring roles [29]. The results of this study are similar to some other studies; when the primary caregiver of a disabled person has a positive attitude, the quality of life of the disabled person and the primary caregiver of the disabled person will be improved [15].
Research by Inan Budak et al. found that although all mothers of children with disabilities were concerned about their child's future and experienced significant changes in their social and family relationships, they had positive perceptions of having a child with intellectual disability [30]. Research by Kimura & Yamazaki found that mothers shifted their focus from caring for their child with a disability to creating a society where their child could thrive [31]. These authors supported the current study's findings, finding that caregivers experienced a change in their outlook on life. When caregivers maintain a positive attitude, the likelihood of older individuals with disabilities encountering unmet needs diminishes by 78% in rural regions and 77% in urban areas [20].
When examining the relationship between the attitudes of primary caregivers towards rehabilitation for people with disabilities and demographic characteristics, the results of univariate and multivariate logistic regression analysis showed that there was a relationship between ethnicity and the attitudes of primary caregivers (OR=3.23; 95%CI: 1.46-7.12, p=0.004. Primary caregivers of people with disabilities who are Kinh have 3.23 times more favorable attitudes towards rehabilitation for people with disabilities than primary caregivers of other ethnicities. In Vietnam, Kinh is the largest ethnic group, accounting for 85.3%, while ethnic minorities have a low proportion, accounting for 14.7% [8]. The analysis results are consistent with the reality of the research area. The study was conducted in a rural area in the midland region of a northern province of Vietnam, so the majority of caregivers of people with disabilities are ethnic minorities.
Age, sex, education, occupation, and relationship with people with disabilities, the analysis results show that there is no statistically significant relationship with the attitudes of primary caregivers about the need for rehabilitation for people with disabilities.
There is a discrepancy in the research results with the 2016 publication of author Neupane et al. on the relationship between the age and gender of primary caregivers and their attitudes towards people with disabilities in terms of mental health [32]. The reason for the difference may be that the study subjects were caregivers in a hospital outpatient clinic, where caregivers of people with disabilities may be temporary employees, and their attitudes depend on age and gender. The primary caregivers in this study were family members willing to do everything without gender or age discrimination. Kaman et al., in their 2023 publication on the association between attitudes of caregivers of children with autism spectrum disorder in East Coast Peninsular Malaysia, found that the factor significantly associated with good attitudes was age 30 and above (OR (95% CI) 0.13 [0.03-0.62]) [33].
Being a caregiver or family member of an individual with a disability is a journey filled with love, challenges, and growth. Caregiver's disability people can create a nurturing and inclusive environment that enables individuals with disabilities to thrive and live fulfilling lives. Research by Madavanakadu et al. found that nearly one-third of caregivers of people with disabilities experience high levels of burden and stress. To improve the well-being of people with disabilities, we first need to promote social inclusion and support programs for caregivers. There is a need for universally designed systems to support caregivers accessing formal and informal support sources and enhancing social connectedness [34].
Purposive sampling makes the study representative of only some of Vietnam's rural population. Further studies should consider random sampling to extrapolate the results to a larger population.
Conclusion
The attitude towards the rehabilitation of primary caregivers of people with disabilities is positive. Ethnicity is related to the attitude toward the rehabilitation of primary caregivers of people with disabilities.
Acknowledgments: This study would like to thank the volunteers and researchers who participated.
Ethical Permissions: The Institutional Review Board, Thai Nguyen University of Medicine and Pharmacy, has approved the research. No. 446/DHYD-HDDD, May 8th, 2018.
Conflicts of Interests: The authors declare no conflicts of interest.
Authors' Contribution: Sinh NP (First Author), Introduction Writer/Methodologist/Main Researcher/Discussion Writer (80%); Hoa LTT (Second Author), Introduction Writer (5%); Hoang TT (Third Author), Discussion Writer/Statistical Analyst (10%); Bach NX (Fourth Author), Assistant Researcher (5%)
Funding/Support: There was no funding.
A person with a disability is a person who has a defect in one or more body parts or a functional impairment manifested in the form of a disability that makes work, daily life, and study difficult. Disabilities commonly cause several harmful effects, such as reduced physical and mental health, decreased quality of life, … [1, 2]. It is estimated that 1.3 billion people, or 16% of the world's population, currently have a disability [3], and 2.4 billion people need rehabilitation services [4-6]. Population growth, accelerated aging, complex disease patterns, the rise of chronic diseases, and advances in life-saving medicine suggest that these numbers will increase [7]. In Vietnam, according to the results of the 2019 population and housing census, the rate of people aged five and over with disabilities is 3.7%, an increase of 0.3% compared to 2009. Of the total number of people with disabilities, the highest number of people with lower mobility, Followed by cognition, upper mobility, Psycho-social, and communication disabilities. There are nearly 5 million households with disabilities; one out of every five households has at least one person with disabilities [8], and 75.7% of the total persons with disabilities population living in rural areas [9]. Social inclusion and community participation of people with disabilities is a concept that runs through current policies for people with disabilities in the world, as well as in Vietnam [1, 4].
In the family, parents care for their children, husbands and wives care for each other, children care for their parents, and when a disability occurs, family members care for each other. According to statistics from the US Census Bureau in 1997 and the National Alliance for Caregiving and AARP in 2004, at least 80% of primary caregivers for people with severe disabilities are family members [10, 11].
In Vietnam, according to traditional culture and medical resources, the family environment is the central place for the rehabilitation of people with disabilities, and family members are the ones who support and care for them. Home-based rehabilitation is considered an economical and effective method in the integration process of people with disabilities through the use of available resources at home and in the community. However, improving the condition of people with disabilities is a complex and challenging task.
There are many barriers to improvement, such as economic status, needs, and aspirations of people with disabilities [4, 12-14]. In addition, improving the condition of people with disabilities also depends on the knowledge, attitudes, and skills of family members of people with disabilities, especially the primary caregiver [15]. The primary caregiver is the person who regularly supports people with disabilities in performing activities in life and daily activities, helping people with disabilities have the opportunity to integrate and reintegrate into society. Identifying attitudes toward rehabilitation among primary caregivers of people with disabilities is essential in developing effective rehabilitation intervention programs to improve the health of people with disabilities. Studies on the attitudes of primary caregivers towards rehabilitation for people with disabilities have received attention in developed countries, while in developing countries, it is still limited [9]. The study was conducted to describe the attitudes of primary caregivers towards rehabilitation for people with disabilities in rural Vietnam and to analyze some related factors.
Instrument and Methods
This cross-sectional study was conducted on primary caregivers of people with disabilities from December 2017 to July 2018 in a rural area of Thai Nguyen province, Vietnam. The sample number was estimated 148 by the WHO formula and 219 individuals were selected by purposive sampling. For this purpose a list of people with disabilities in 4 research communes was prepared. Then, interviews with primary caregivers of people with disabilities were conducted.
The questionnaire was made according to the content of the “Community-based rehabilitation program”. This questionnaire was developed in 4 steps including: Step 1) The questionnaire was developed based on the content of the “Community-based Rehabilitation Program” (The program was established under Decision No. 4039/QD-BYT of the Ministry of Health of Vietnam). Step 2) the face value, content and structure of the questionnaire were evaluated using qualitative methods through the opinions of 3 rehabilitation experts and 30 primary caregivers of people with disabilities. Step 3) the reliability of the questionnaire was also evaluated (with a resulted value of 0.68). Step 4) The questionnaire was adjusted according to the opinions of experts and research subjects. The result of the questionnaire had 10 items.
. The study used this tool which included 10 questions with a 5-level Likert scale (1=strongly disagree, 2=disagree, 3=unclear, 4=agree, and 5=strongly agree). Each correct answer is scored 1 point and each incorrect answer is scored 0 points. Classify good, average, and poor attitudes according to the total number of correct answers/total scale points, with corresponding scores: good ≥80%, 80%> average >60%, and poor ≤60%.
After obtaining the required permissions, interviewers were trained and participated in a pilot study of the toolkit to help them collect consistent data. All research subjects were introduced to information about the study and asked and given a consent form if they agreed to participate. The researcher and interviewers guided each question for the research subject to answer. Each interview lasted 10-20 minutes.
Data were analyzed using Epidata 3.1 and SPSS 20 software. Statistical analysis was done by univariate logistic regression at p<0.05 significance level.
Findings
The primary caregivers of people with disabilities had a mean age of 50.2±14.6 (10 to 87 years old), of which 67.6% were female, 55.7% were ≥50 years old, 56.6% were Tay ethnic group, 64.9% had secondary education or higher, and 75.3% worked as farmers (Table 1).
Table 1. The frequency of general characteristics of caregivers of people with disabilities (n=219)
The primary types of disability were motor (51.6%) and intellectual (36.5%). State subsidies were the primary source of income for people with disabilities (83.6%). Regarding marital status, 42.5% of people with disabilities were unmarried, and 38.4% lived with their spouse (Table 2).
Table 2. The frequency of some disability characteristics of people with disabilities (n=219)
Most participants agreed and strongly agreed with the need for rehabilitation for people with disabilities (93.1%), the need for rehabilitation to be carried out in the community (86.3%), the need for primary caregivers to have good knowledge of rehabilitation (85.4%), and the need to care for people with disabilities both physically and mentally (97.3%). The results of classifying the attitudes of primary caregivers of people with disabilities at a good level were 70.8%, an average level of 16.9%, and a poor level of 12.3% (Table 3).
Table 3. Attitudes of primary caregivers toward rehabilitation for people with disabilities
There was no relationship between age, gender, education level, occupation, relationship with people with disabilities, and the attitude of the primary caregiver towards rehabilitation for people with disabilities (p>0.05). Ethnicity was related to the attitude of the primary caregiver of people with disabilities (p<0.05). The primary caregiver of Kinh ethnicity had more attitude towards people with disabilities than the primary caregiver of other ethnic groups (Table 4).
Table 4. Univariate association with the view that rehabilitation for people with disabilities should be carried out in the community
Discussion
The goal of many countries in the world, including Vietnam, is to carry out early detection and early intervention of disabilities to reduce the impact of disabilities, overcome the consequences of disabilities, and help people with disabilities reintegrate into society through rehabilitation activities, especially in the community. Rehabilitation activities in the community for people with disabilities depend on many factors, affecting the quality and results of rehabilitation for people with disabilities, such as the educational level of the primary caregiver of the disabled person, the relationship of the primary caregiver with the disabled person, access to rehabilitation services, of which, significantly, the attitude of the primary caregiver for the disabled person [16].
This study aimed to describe the attitudes of primary caregivers towards rehabilitation for people with disabilities in rural Vietnam and to analyze some related factors. The study discovered some demographic characteristics and attitudinal characteristics of primary caregivers of people with disabilities and identified factors related to the attitudes of primary caregivers of people with disabilities in rural areas of Northern Vietnam.
Research results show that the primary caregivers of people with disabilities are mainly their parents aged ≥50 years. They are mainly female, Tay ethnic group with high school education or higher, and farming occupation. The characteristics of the study subjects are consistent with the study area, which is the rural area of Northern Vietnam. In this area, the Tay ethnic group is densely concentrated [8]. The primary caregivers are mainly farmers with a high school education or higher. This would suggest that future intervention studies aimed at improving knowledge about Rehabilitation for people with disabilities in similar areas should pay attention to intervention content appropriate to the educational level and occupation of the research subjects. This result is similar to the research results of author Zheng et al. published in 2016 in China, showing that over 90% of the primary caregivers are family members [17]. This similarity comes from the cultural similarities of East Asians. In Vietnam, family members play an essential role in caring for and supporting people with disabilities at the family level [18]. Family and relatives are the first places that can be mobilized to care for family members with disabilities. In the relationship with people with disabilities, the majority are mothers of people with disabilities, showing that the attachment of the caregiver to people with disabilities will be long-term, limiting the change and resignation of the primary caregiver for people with disabilities. This is an advantage of the intervention process, as it improves knowledge, attitudes, and practices on rehabilitation for the primary caregiver. A family member for a caregiver is the simple economics of the situation. A professional caregiver can easily be beyond a disabled person’s budget. Another reason for using a family member as a caregiver is that care is a personal entity, and people can feel much more at ease with a family member doing things for them than a stranger.
The causes of disability of people with disabilities in the study were mainly due to illness and congenital causes—people with disabilities with motor disabilities, intellectual disabilities, and hearing and speech disabilities. According to Hung et al., in Vietnam, when implemented across ecological regions across the country, people with disabilities needing rehabilitation in the group with motor disabilities accounted for the most significant proportion of people with disabilities treated at provincial and district hospitals, the rates in 2018, 2019, 2020 were 72.6%, 77.2%, and 73.0% respectively; Rehabilitation in the group with hearing and speech disabilities, cognitive dysfunction and other types of disabilities had a lower rate [19].
Family members of people with disabilities, especially the attitudes of primary caregivers, have a significant impact on the quality of care for people with disabilities. Primary caregivers are the second focus of most studies on attitudes toward people with disabilities. Positive attitudes from primary caregivers often lead to better support and more positive experiences for people with disabilities. However, primary caregivers can sometimes exhibit negative attitudes due to factors such as stress, lack of understanding, or social stigma associated with disability, which can lead to challenges in the caregiving process. Research by Woo et al. showed that the lack of positive attitudes from primary caregivers led to a lack of support to meet the needs for activities of daily living support for people with disabilities [20].
The results of the study showed that most primary caregivers had positive attitudes in agreement and strongly agreed with the answers related to rehabilitation for people with disabilities at home: Rehabilitation for people with disabilities is necessary; Rehabilitation must be carried out in the community; Primary caregivers needing good knowledge about rehabilitation and needing to care for people with disabilities both physically and mentally. Studies have found that community-based rehabilitation is a support tool that allows for the continued care of people with disabilities/patients in their familiar living environment, helping them continue their activities, improving their quality of life, and reducing the burden on caregivers [21-23]. Stolee et al. found that home-based rehabilitation increases the effectiveness of treatment for people who do not have access to inpatient or institutional care or can supplement such care [24]. Two Cochrane reviews have found that in‐person home‐based rehabilitation may be as effective as institutional‐based rehabilitation [25, 26]. The proportion of primary caregivers with a general attitude toward rehabilitation for people with disabilities at a good level was 70.8%, with an average level of 16.9% and a poor level of 12.3%. This result is higher than the results of some other studies: The study of Torabi et al., the mean score of caregiver attitude was 108.77±6.20, with 50.7% of primary caregivers having a good attitude in caring for people with disabilities and 49.3% of primary caregivers having an average attitude [27]; Shah et al. study showed that the percentage of caregivers with good attitudes toward patients was 48.3% [28]. Primary caregivers of people with disabilities in this study also expressed positive attitudes toward the rehabilitation of people with disabilities.
Primary caregivers of people with disabilities all agreed and strongly agreed that the issue of caring for people with disabilities is complicated and requires many people to do it. Rehabilitation for people with disabilities will be a burden for their families because the main source of income for people with disabilities is mainly based on the state budget. However, they believe that people with disabilities can recover if they receive good rehabilitation training and have equal rights in social activities. This result is also consistent with the reality of Vietnamese customs and practices; everyone in the family is willing to support people with disabilities in reintegrating into the community, improving the quality of life of people with disabilities. Thus, this is a favorable factor for implementing rehabilitation for people with disabilities in the community.
One of the barriers for people with disabilities in achieving equality in society is negative attitudes towards people with disabilities. Some families act as a form of implicit protection for people with disabilities in society by limiting their contact with the outside world. At the same time, they increase their nurturing and care for people with disabilities to create a safe environment within the family, which is a very stressful choice [18].
95.4% of primary caregivers agree and strongly agree that people with disabilities are normal citizens and have equal rights in social activities. This is a positive attitude. They are patient, sympathetic, and respectful and focus on the needs and abilities of individuals to promote independence and quality of life for people with disabilities. Primary caregivers believe that people with disabilities can recover if they are well-trained in Rehabilitation and arrange suitable jobs for people with disabilities within their working capacity.
Naghavi & Zamani-Forooshani showed that while negative consequences of caregiving existed, coping strategies and adaptation could help caregivers move from the difficult stage of accepting disability to adaptation and positive, caring roles [29]. The results of this study are similar to some other studies; when the primary caregiver of a disabled person has a positive attitude, the quality of life of the disabled person and the primary caregiver of the disabled person will be improved [15].
Research by Inan Budak et al. found that although all mothers of children with disabilities were concerned about their child's future and experienced significant changes in their social and family relationships, they had positive perceptions of having a child with intellectual disability [30]. Research by Kimura & Yamazaki found that mothers shifted their focus from caring for their child with a disability to creating a society where their child could thrive [31]. These authors supported the current study's findings, finding that caregivers experienced a change in their outlook on life. When caregivers maintain a positive attitude, the likelihood of older individuals with disabilities encountering unmet needs diminishes by 78% in rural regions and 77% in urban areas [20].
When examining the relationship between the attitudes of primary caregivers towards rehabilitation for people with disabilities and demographic characteristics, the results of univariate and multivariate logistic regression analysis showed that there was a relationship between ethnicity and the attitudes of primary caregivers (OR=3.23; 95%CI: 1.46-7.12, p=0.004. Primary caregivers of people with disabilities who are Kinh have 3.23 times more favorable attitudes towards rehabilitation for people with disabilities than primary caregivers of other ethnicities. In Vietnam, Kinh is the largest ethnic group, accounting for 85.3%, while ethnic minorities have a low proportion, accounting for 14.7% [8]. The analysis results are consistent with the reality of the research area. The study was conducted in a rural area in the midland region of a northern province of Vietnam, so the majority of caregivers of people with disabilities are ethnic minorities.
Age, sex, education, occupation, and relationship with people with disabilities, the analysis results show that there is no statistically significant relationship with the attitudes of primary caregivers about the need for rehabilitation for people with disabilities.
There is a discrepancy in the research results with the 2016 publication of author Neupane et al. on the relationship between the age and gender of primary caregivers and their attitudes towards people with disabilities in terms of mental health [32]. The reason for the difference may be that the study subjects were caregivers in a hospital outpatient clinic, where caregivers of people with disabilities may be temporary employees, and their attitudes depend on age and gender. The primary caregivers in this study were family members willing to do everything without gender or age discrimination. Kaman et al., in their 2023 publication on the association between attitudes of caregivers of children with autism spectrum disorder in East Coast Peninsular Malaysia, found that the factor significantly associated with good attitudes was age 30 and above (OR (95% CI) 0.13 [0.03-0.62]) [33].
Being a caregiver or family member of an individual with a disability is a journey filled with love, challenges, and growth. Caregiver's disability people can create a nurturing and inclusive environment that enables individuals with disabilities to thrive and live fulfilling lives. Research by Madavanakadu et al. found that nearly one-third of caregivers of people with disabilities experience high levels of burden and stress. To improve the well-being of people with disabilities, we first need to promote social inclusion and support programs for caregivers. There is a need for universally designed systems to support caregivers accessing formal and informal support sources and enhancing social connectedness [34].
Purposive sampling makes the study representative of only some of Vietnam's rural population. Further studies should consider random sampling to extrapolate the results to a larger population.
Conclusion
The attitude towards the rehabilitation of primary caregivers of people with disabilities is positive. Ethnicity is related to the attitude toward the rehabilitation of primary caregivers of people with disabilities.
Acknowledgments: This study would like to thank the volunteers and researchers who participated.
Ethical Permissions: The Institutional Review Board, Thai Nguyen University of Medicine and Pharmacy, has approved the research. No. 446/DHYD-HDDD, May 8th, 2018.
Conflicts of Interests: The authors declare no conflicts of interest.
Authors' Contribution: Sinh NP (First Author), Introduction Writer/Methodologist/Main Researcher/Discussion Writer (80%); Hoa LTT (Second Author), Introduction Writer (5%); Hoang TT (Third Author), Discussion Writer/Statistical Analyst (10%); Bach NX (Fourth Author), Assistant Researcher (5%)
Funding/Support: There was no funding.
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