Magnitude of Satisfaction and Associated Factors Among Caregivers of Children with Disabilities Towards Community-Based Rehabilitation Service in Central and North Gondar Zone, Northwest Ethiopia: A Community-Based Cross-Sectional Study

Introduction

Community-Based Rehabilitation (CBR) is a community development strategy set by the World Health Organization (WHO) for enhancing the lives of Persons With Disabilities (PWDs) and their caregivers within their community.¹ The CBR service give emphasize on utilization of locally available resources by including the caregivers of PWDs, the community, and beneficiaries.^2,3

Globally, 150 million children living with disabilities,^4,5 the vast majority (80%) of these children live in resource-poor countries.^6,7

In Africa, the United Nations Children’s Fund (UNICEF) estimates that between 5% and 10% of children had disabilities where 90% of these children do not attend school, moreover the burden is higher on caregivers.⁸ A study done in rural Eastern Ethiopia showed that the magnitude of childhood disability was 4.8%.⁹

Most Children With Disabilities (CWDs) required assistance from their caregivers.¹⁰ In Low and Middle-Income Countries (LMICs) caregivers providing a bulk of care for their children.^11,12 Evidence shows that caregivers of CWDs in low resource countries had a different emotional and physical impact on their family life.^13–15

To reduce different burdens on caregivers of CWDs, CBR services are available in more than 90 countries across the world.¹⁶ The implementation of CBR-service is varying from one country to another depending on the availability of resources.^17–19

The overall approach of CBR-service is to focus on PWDs and their families including existing services.²⁰ The CBR-service has five components among of these healthcare, education, financial support and assistive device are mainly provided by UOG- CBR-service in our study areas.

Satisfaction is the emotional reaction or psychological state of a person regarding the services he/she received.²¹ It varies from person to person due to many factors that could be affected the caregiver’s satisfaction. Some of those factors stated in studies are age, income, level of education, working conditions, and the types of CBR service.^11,22,23

Measuring caregivers’ satisfaction is a recommended approach at all levels of health and other types of services for improvement.²⁴ Regarding this measure caregivers’ satisfaction towards CBR-service plays a significant role in the improvement of service.^25,26

Different studies were conducted on the burden of disability and the importance of CBR service.^8,9 However, there is a lack of caregiver’s satisfaction with CBR-service. In Ethiopia, from our extensive search of previously published works, we found that there is a lack of data on satisfaction with CBR-service among caregivers of CWDs. Therefore, our study aimed to assess the caregiver’s satisfaction and associated factors among caregivers of CWDs towards community-based rehabilitation.

Methods

Study Design and Settings

A community-based cross-sectional study design was conducted in Central and North Gondar Zone, Amhara Regional state, Ethiopia from March to September 2020 to assess satisfaction and associated factors among caregivers of CDWs.

The Zone is administratively divided into Central and North Gondar. The University of Gondar (UOG) community-based rehabilitation program had giving service to 1100 CWDs for the last fourteen years. All caregivers of CWDs in Central and North Gondar zones whose children get CBR-service were the source population and all caregivers of CWDs at Central and North Gondar zone whose children have to get UOG-CBR-service and available during the data collection period were the study populations. Caregivers of CWDs whose children have to get CBR service for three months and above were included. Whereas caregivers of CWDs whose children have got additional services from other non-governmental organizations were excluded from the study.

Sample Size and Sampling Techniques

The sample size was calculated using a single population proportion formula (n = (Zα/2)²*P (1-P)/(d)²) with the following assumptions of 50% of caregivers’ satisfaction with CBR service expected margin of error (d) 5% and 95% confidence level. n = (1.96)²(0.5) (0.5)/ (0.05)² = 384. However, the estimated number of caregivers of CWDs in the Central and North Gondar zone was 1100, which was less than 10,000. For that situation, the target population was small enough (if N < 10,000). Then, using the finite population correction formula and adding 10% of the non-response rate the final sample size was 312.

Initially, the proportional allocation was applied for each selected Woredas (the administrative name of a place like regions, zones, Woredas, and Kebeles). A systematic random sampling technique was used to select 312 study participants from 1100 caregivers of CWDs in the Central and North Gondar zone. The sampling interval (k) was calculated 1100 divided by 312. “K” =3, then the first study participant was randomly selected by lottery method from “intervals (“1 to k” =1 to 3) it was 2 and other study participants were selected systematically in every “kth” interval from each proportion of study population.

Variables

The dependent variable of the study was Caregivers’ satisfaction with CBR service, whereas the independent variables were Socio-demographic characteristics of the caregivers (age, sex, residence, religion, educational status, marital status, occupation, household income, family size, household composition, having helpers, and relationship), Children socio-demographics characters (age, gender, birth order), types of disabilities (physical, visual, hearing, intellectual, and multiple), type of the services (health, education, mobility device, financial support), number of services received, duration of service started and frequency of service.

Operational Definition

Caregivers

Any person who has the responsibility of taking care of CWD. He or she may be a parent, relative, or other paid worker who lives with CWD, who is going to be interviewed.

Community-Based Rehabilitation

This is a community action to ensure the life of CWDs and their caregivers. Which includes health care, education, financial support, mobility devices.

Child

Means any human being from birth to the age of 18 years.²⁷

Disability

Any restriction or lack of ability to perform an activity in a manner within the range considered normal for a human being.²⁸

Children with Disabilities

Are children with chronic physical, visual, hearing, learning, and multiple types of disabilities (ie, have restriction in movement, seeing, hearing, learning or combination of those) who need health and other services.^29,30

Satisfaction

Is the amount of caregivers’ expectation regarding UOG-CBR- service and it is quantified by the Client Satisfaction Questionnaire (CSQ-8) tool. After computing the sum of eight items of the CSQ-8 tool; since the data were normally distributed, dissatisfied rated below the mean and satisfied; from the mean and above.³¹

Data Collection Tool and Procedure

The data were collected by trained physiotherapists by interviewing the participants using a structured questionnaire and (CSQ-8). The CSQ-8 is designed for direct measures of service satisfaction with a wide range of caregivers’ groups and service types. It is a standard self-reported questionnaire constructed to measure satisfaction with service received by individuals and caregivers.³² It consists of eight items, with each rated on a 4-point Likert-type scale. The CSQ-8 has a minimum score of 8 and the maximum score of 32. A higher score represents greater satisfaction. The CSQ-8 is applicable for ongoing as well as terminated CBR-service and other health services. This scale has been broadly adopted, nationally, internationally and used for scientific work, program evaluation, and research.³³

The willingness of study participants (caregivers of CWDs) checked by informed consent and who were willing to participate in the study were included by using the inclusion and exclusion criteria. After obtaining informed consent four trained physiotherapists (bachelor science) were collected the data through interviewing the study participants.

Data Quality Control and Analysis

Before data collection, data training was given for data collectors on the study objectives, data collection instruments, techniques, producers, the importance of privacy, and ensuring the confidentiality of the respondents. Data collectors were supervised daily and every night; the consistency and completeness of data were checked by Principal Investigator (PI). The original English version of the data collection tool was translated into Amharic and re-translated back into English by language expertise to maintain its consistency.

Pretest was done on 16 caregivers (5% of the sample size) in the Central Gondar zone Maraki sub-town. The understandability, consistency, and appropriateness of the questionnaire were checked. Finally, all findings from the pre-test were incorporated into the final questionnaire and necessary amendments were done before the actual data collection. All aspects of the data collection process were supervised by the PI to ensure data quality.

The collected data was edited, coded, cleaned, and entered into EPI info 7 software and export to SPSS version 20 software for analysis. Bi-variable and multivariable logistic regressions analysis was employed to show the relationship between dependent and independent variables. All possible predictors which were significant in the bivariate analysis (p-value < 0.25) were included in the multivariable logistic model.

The Hosmer-Lemeshow goodness-of-fit test was used to assess the fitness of the model. Multicollinearity among the explanatory variables was checked using the Variance Inflation Factor (VIF>10). To control for possible confounding and identify independent factors associated with caregivers’ satisfaction on CBR-service a final multivariable model was built using the backward stepwise method. The level of statistical significance was declared at a p-value of less than 0.05. Adjusted odds ratio with its 95% CI was used to show the strength of association between each explanatory variable and the outcome variable. The results of the analysis were presented in descriptive texts, tables, and graphs.

Results

Sociodemographic Characteristics of Caregivers and Children with Disability

A total of 312 study participants responded to the interviewer-administered questionnaire with a response rate of 100%. Among the total study participants, 269 (86.2%) were females, the mean age of caregivers was 39.37 (SD=7.89), religious 265 (84.9%) were orthodox, marital status 175 (56.1%) were married, residence 269 (86.2%) live in urban, educational status 174 (55.8%) had no formal education, and occupational status 128 (41.0%) were daily labor (Table 1).

Table 1 Sociodemographic Characteristics of Caregivers with the Community-Based Rehabilitation in Central and North Gondar Zone in 2020 (n=312)

The mean age of children with disabilities was 11.20 years. Most of the children with disabilities 169 (54.2%) were males and 286 (91.7%) of caregivers had one child with disabilities only (Table 2).

Table 2 Sociodemographic Character of Children with Disability with the Community-Based Rehabilitation in Central and North Gondar Zone in 2020 (n=312)

The Relationship of Caregivers and Children with Disability

Household composition of caregivers 176 (56.4%) had two parents live together, 111 (35.6%) were single mothers, the majority of caregivers 259 (83%) were mothers, 242 (77.8%) had helpers, from having helpers 97 (31%) were daughters (Table 3).

Table 3 The Relationship of Caregivers, Children with Disabilities, and Helpers with the Community-Based Rehabilitation in Central and North Gondar Zone in 2020 (n=312)

Type of Disability of Children with Disability

Among a total of children with disabilities included in the study, 36.2% had a physical disability, 31.8% had multiple disabilities, 15.1% had intellectual/learning disability, 9.9% had a hearing disability, and 7.1% had vision disability (Figure 1).

Figure 1 Type of disability of children with disabilities they received service with the community-based rehabilitation in central and north Gondar zone in 2020 (N=312).

Types, Frequency, and Duration of Community-Based Rehabilitation Service

From total children with disabilities, 117 (37.5%) received health service, 34 (10.9%) received educational service, 17 (5.4%) received mobility devices, 9(2.9%) received financial support, and 177 (56.6%) received one type of service (Table 4).

Table 4 Types of Services, Way of Attending Services, Frequency and Duration of Service with Community-Based Rehabilitation in Central and North Gondar Zone in 2020 (n=312)

Caregivers’ Satisfaction with UOG-CBR- Services

Regarding the respondent’s satisfaction, 189 (60.9%) of caregivers scored in the CSQ-8 satisfied category. Whereas 123 (39.4%) scored dissatisfied category. The dissatisfaction rates were found in kind of wanted CBR service 211 (67.6%) followed by the problem-solving capacity of CBR-service 186 (59.6%) and the quality of CBR service 178 (57.1%) (Figure 2).

Figure 2 The caregivers’ satisfaction on cbr-service on csq-8 items in central and North Gondar Zone, Ethiopia, 2020 (N=312).

Associated Factors for Caregivers’ Satisfaction

Regarding socio-demographic characters of caregivers; female gender of caregivers AOR=0.19 (0.054–0.68), older age (>50 years) of caregivers AOR=0.16 (0.03–0.85), farmer occupational status AOR=0.14 (0.05–0.42), location of North Gondar zone AOR=7.02 (6.78–8.59) and high monthly income AOR=2.48 (1.09–5.61) were associated significantly.

With related to the type of disability, physical disability is significantly associated AOR=2.73 (1.20–6.17). Regarding factors related to CBR-service; two or more types of service received AOR=3.65 (1.03–6.57), the duration of service started 8–14 years at AOR=4.36 (1.44–7.04) and frequency of follow-up 5–8 times per month at AOR=3.91 (2.18–7.01) were significantly associated (Table 5).

Table 5 Association of Factors for Caregivers’ Satisfaction Towards CBR-Services in Central and North Gondar Zone, Northwest Ethiopia, in 2020

Discussion

According to our study, the overall satisfaction of caregivers with CBR service utilized in the study area is 60.9% (95% CI 55–66%).

This result is similar to the previous study conducted in Ethiopia (62.1%),³⁴ And, it is lower than the study done in Ethiopia (72%),³³ Spain (74.1%),³⁵ and Malaysia (89%).¹⁶ In contrast it is higher than the previous study done in Ethiopia (37.4%).³⁶ The possible reasons for the discrepancy might be attributed to variation in socio-cultural characteristics, sample size, study design, amount of service, type, and quality of service.

In our study, the number of services delivered for children with disabilities was significantly correlated to caregiver satisfaction. The odd of caregivers of CWDs whose children received two or more types of CBR services was 3.65 times more likely satisfied than they received one type of CBR service (AOR=3.65,95% CI 1.03–6.57). This might explain by the increment of the amount and type of CBR service that has to meet the demands of CWDs and their caregivers. This result consisted of a study conducted in Australia.³⁷

Regarding gender of caregivers’ females are decreased their satisfaction by 81% than males (AOR=0.19, 95% CI 0.05–0.68). It is contrary to the study conducted in Canada.^34,38 The differences might be the small sample size in the previous study and the quality of service delivered. The odd of being older age of caregivers with CWDs were reduced their satisfaction by 84% times than the younger age of caregivers (AOR=0.160, 95% CI 0.03–0.85). This finding agrees with a study conducted in France.³⁹

The odd of being a farmer is 86% times less likely reduced their satisfaction than others occupational status (AOR=0.14, 95% CI 0.05–0.42).⁴⁰ The possible explanation might be that being farmers can have more expectations from CBR-service than others. Mostly, satisfaction might be influenced by educated participants in their occupation, exposure to different services, and information access.

The odds of having a physical disability were 2.73 times more likely satisfied than those whose children had other types of disability (AOR=2.73, 95% CI 1.20 to 6.17). This might explain by children with physical disabilities have low burdens on their caregivers than children with intellectual and multiple types of disabilities. As a result, a child who has only movement restrictions can learn and communicate easily than a child who has multiple disabilities. This result agrees with a study done in Turkey.²¹

Regarding service duration and frequency of follow-up, the caregivers of CWDs whose children started service for a long duration are 4.36 times more likely satisfied than those who had a short duration of service. The caregivers of CWDs whose children had follow-up 5–8 times per month are 3.91 times more likely satisfied than the caregivers of CWDs had follow-up 1–4 times per month (AOR=3.91 with 95% CI 1.44 −7.01). Regarding the previous study, the duration and frequency did not predict the caregiver’s satisfaction.^41,42 The possible explanation might be the duration of the previous study was a short duration and rehabilitation service for CWDs need a long duration with increased frequency of follow-up to achieve a better outcome.

The caregivers of CWDs who live in the North Gondar zone were 7.02 times more likely satisfied than the caregivers who live in the central Gondar zone with (AOR=7.02, 95% CI 6.78 to 8.59). This might be explained by differences in supervisors’ supervision, commitments of CBR-field workers, and sessions of follow-up. This result agrees with a study done in Malaysia on caregiver’s satisfaction on CBR-service was varies across different states.¹⁶

The limitation of the study was since it is a quantitative approach, did not consider the qualitative part of the study.

Conclusion

Our study revealed that more than half of caregivers were satisfied with UOG-CBR-service. Female gender of caregivers, older age of caregivers, and farmer occupational status of caregivers have significantly reduced caregivers’ satisfaction. On the other hand, physical types of disability, high monthly income, North Gondar zone of the residence, increased number of services, duration of services, and the frequency of follow-up were increased caregivers’ satisfaction with CBR services.