1. Background
Responsiveness, which refers to the ability of the health system to meet the legitimate expectations of clients regarding non-clinical aspects of the care process, is one of the goals of the health system. This aspect of service, which directly affects people's well-being, deals with how the health system interacts with clients and is client-centered (1). The World Health Organization’s framework for responsiveness consists of eight domains, which are grouped into two main categories: (1) Respect for people and (2) being client-oriented (2). A responsive health system respects patients' rights and provides an enabling environment for optimal usage of health care. Responsiveness of the health system, in turn, encourages people to use the services, increases coverage, and improves the health of the population. People with positive experiences with the health system are more likely to follow prescriptions and continue using health services. On the other hand, negative experiences with health services lead to clients’ dissatisfaction and interfere with further use of the services (3).
A responsive health system should provide inclusive, legitimate, participatory, and accountable services, ensure the social rights of citizens, and take into account the needs of minorities (4). People with disabilities are “the world's largest minority” (5). This group of people, just like others, might need primary, secondary, or tertiary healthcare services from time to time during their lives (6). Besides that, results of some studies show the overall health condition of people with disabilities is poorer than the general population (7). Furthermore, it is expected that population aging and the increasing prevalence of chronic non-communicable diseases on the one hand, and disasters, wars, and accidents on the other hand, will increase the number of people with disabilities in the following years (5, 8). Some studies have shown that people with disabilities might be subjected to stigmas and face barriers in accessing healthcare services (9). There are some studies on the responsiveness of clinics and hospitals in different parts of Iran to the general population. However, none of them focus on the responsiveness of primary, secondary, and tertiary healthcare centers from the perspective of people with disabilities. Note that primary health providers are the ‘health houses’ and ‘health bases’, secondary health centers consist of outpatient clinics and hospitals, and tertiary healthcare services are provided by specialized rehabilitation centers in Iran. So, it seems necessary to study the responsiveness of different healthcare settings to people with disabilities.
2. Objectives
This survey examined the points of view of people with disabilities about the responsiveness of various healthcare settings in Ilam city. The results of the studies would help to find areas of suboptimal responsiveness, to adopt supportive policies and programs to reduce any inequality in accessing healthcare services for people with disabilities.
3. Methods
3.1. Study Design
In this survey, people with disabilities were reached out via Ilam city’s Welfare Organization. This organization is believed to be the best way to access people with disabilities throughout Ilam city, as people with disabilities generally register their names with this organization to benefit from any facilities provided for people with disabilities. About 1450 adult people with disabilities were registered on the list. The sample size was calculated to be 304 people using the below formula, in which z = 1.96, e = 0.05, N = 1450 (population size), and P = 0.5.
3.2. Participants
Using a systematic random sampling method, the first person was selected randomly, then every 14th person with disabilities was selected from the registration list. They were called by phone, informed about the research, and asked if they had received any outpatient healthcare services in primary healthcare centers, secondary healthcare centers (clinics and/or hospitals), or tertiary healthcare centers (rehabilitation centers) during the past 6 months for outpatient visits or during the last 12 months for hospitalization. This period of time is recommended by the World Health Organization to minimize recall bias. If they answered “yes” to the question and agreed to participate, they were included in the survey.
They were interviewed and asked about the responsiveness of all inpatient and/or outpatient centers they attended during that period of time. For each center, a separate form was completed accordingly. Note that exclusion criteria were having a mental disability severe enough to become a barrier to answering the questions of the questionnaire, receiving health services in centers located in places other than Ilam city, and quitting from answering the questionnaire to the end.
Table 1 shows the number of questionnaires answered by people with disabilities for each type of healthcare center.
Table 1.Number of Questionnaires Filled for Each Type of Health Center a
| Features of Healthcare Centers | Respondents |
|---|---|
| Setting | |
| Outpatient | 297 (87.4) |
| Inpatient | 43 (12.6) |
| Type | |
| Primary healthcare center | 66 (19.4) |
| Hospital/clinic | 174 (51.2) |
| Rehabilitation center | 100 (29.4) |
| Management | |
| Public | 193 (56.8) |
| Private | 133 (39.1) |
| Charity | 14 (4.1) |
a Values are expressed as No (%).
Among respondents, the male/female ratio was 166 to 152. There were 270 people with motor disabilities, 21 people had visual disabilities, another 21 had hearing disabilities, and 6 people had multiple disabilities.
3.3. Scales
The Rashidian et al. questionnaire (10) was used for the survey. This questionnaire has been designed based on the Health System Responsiveness Measurement Framework of the World Health Organization (11), and examined for validity and reliability (10), and has been used in several studies on healthcare responsiveness in Iran (10, 12-15). The questionnaire consists of three parts: The first part includes demographic information; the second part consists of questions about the responsiveness of the center in 8 domains: (1) Dignity (4 questions), (2) autonomy (3 questions), (3) prompt attention (3 questions), (4) communication (4 questions), (5) confidentiality (3 questions), (6) social support (3 questions), (7) quality of basic amenities (3 questions), and (8) choice (3 questions); and the third part includes questions about the importance of different domains of responsiveness from the clients' point of view, as well as questions about experiencing inequality in responsiveness of healthcare services toward them. Some questions have 4 and others have 5 answer choices. Studies which used the World Health Organization framework adopt different ways of calculating the total responsiveness score and domain scores. In this study, score calculation takes place as follows: On a 4-point scale, items 1 = 0, 2 = 33.3, 3 = 66.7, and 4 = 100, and on a five-point scale, items 1 = 0, 2 = 25, 3 = 50, 4 = 75, and 5 = 100. The score for each domain was calculated by summation of question scores. So, the scoring range was from 0 to 100, where a score range of 75 and above was considered as good responsiveness. The Cronbach's alpha for the whole questionnaire is calculated to be 0.867 in the current study sample.
3.4. Data Analysis
Data analysis was performed by SPSS ver.26 using descriptive statistics, including frequency, mean, and standard deviation according to the type of variable. The Kolmogorov-Smirnov normality test was used to check the distribution of data. The Mann-Whitney U and Kruskal-Wallis tests were used to compare the responsiveness of different groups, and P < 0.05 was considered as significant.
3.5. Ethical Considerations
The study has been approved by the Ethics Committee of University of Social Welfare and Rehabilitation Sciences IR.USWR.REC.1401.252. Informed consent was obtained from all participants included in this study prior to the interview.
4. Results
A total number of 318 people with disabilities who had received healthcare services from primary healthcare centers, outpatient clinics, or rehabilitation centers in the past 6 months or had been hospitalized in the past twelve months participated in this study. Each participant had visited one or more centers during the target period, so a total number of 340 questionnaires were completed for 48 centers. The M/F ratio of participants was 1.1:1. About 70% of participants were in the adult age range (18 - 59 years old).
Total responsiveness score and domain scores are shown in Table 2.
Table 2.Responsiveness Scores of Health Care Centers as Reported by Clients with Disabilities, Ilam City 2023 a
| Responsiveness Domains | Type of the Center | ||||
|---|---|---|---|---|---|
| Primary-Healthcare Centers | Secondary-Healthcare Centers | Tertiary-Healthcare Centers (Rehabilitation Centers) | Overall | ||
| In-patient (Hospitals) | Out-Patient (Clinics) | ||||
| Prompt attention | 94.8 ± 9.86 | 88.1 ± 14.68 | 92.5 ± 10.89 | 91.5 ± 12.70 | 92.1 ± 11.90 |
| Dignity | 89.5 ± 12.3 | 79.4 ± 19.81 | 84.0 ± 15.41 | 89.8 ± 13.16 | 86.2 ± 15.22 |
| Communication | 87.7 ± 11.47 | 74.8 ± 23.71 | 78.6 ± 18.21 | 84.6 ± 16.52 | 81.6 ± 17.91 |
| Autonomy | 80.4 ± 15.45 | 68.6 ± 24.21 | 72.7 ± 20.88 | 79.7 ± 21.93 | 75.8 ± 21.09 |
| Confidentiality | 91.5 ± 15.59 | 66.0 ± 28.62 | 83.1 ± 20.77 | 93.3 ± 13.04 | 85.6 ± 20.94 |
| Choice | 81.1 ± 9.86 | 89.0 ± 15.93 | 83.5 ± 17.60 | 82.4 ± 12.58 | 83.4 ± 14.84 |
| Quality of basic amenities | 82.5 ± 13.0 | 70.2 ± 27.71 | 76.4 ± 18.11 | 81.1 ± 16.23 | 78.2 ± 18.60 |
| Social support | - | 94.8 ± 10.12 | - | - | 94.8 ± 10.12 |
| Total responsiveness | 86.9 ± 6.28 | 78.9 ± 12.79 | 81.5 ± 11.51 | 86.1 ± 11.49 | 83.5 ± 11.20 |
a Values are expressed as mean ± SD.
As can be seen in Table 2, the highest (best) score of responsiveness was reported for prompt attention in primary-care centers (94.8 ± 9.86) and the lowest one was reported in confidentiality (86.2 ± 15.22) domain in hospitals. Differences in responsiveness total score and domain scores among different settings are shown in Table 3. As the reported responsiveness scores of the healthcare centers were not normally distributed, non-parametric tests were used for comparisons.
Table 3.Differences of Responsiveness Scores of Different Healthcare Centers in Terms of Type of Management, Type of Services, and Settings; Ilam City 2023 a
a Values are expressed as mean ± SD.
b Kruskal Wallis test followed by Tukey test used for comparison.
c Mann-Whitney U test used for comparison.
As can be seen in Table 3, there was a significant difference in total responsiveness scores between different types of centers. Although the total responsiveness scores among primary healthcare centers (86.8 ± 6.28) and rehabilitation centers (86.1 ± 11.49) were not different from each other, their responsiveness scores were significantly higher than responsiveness scores in secondary healthcare centers (80.8 ± 11.86; P-value < 0.004). Also, the responsiveness of private centers (90.3 ± 6.92) was significantly better than the others (P-value < 0.001), and the total responsiveness scores in outpatient centers (84.2 ± 10.81) were better than those of inpatient centers (78.9 ± 12.79; P-value = 0.004).
Table 4 demonstrates the importance of different domains of responsiveness, from the points of view of clients with disabilities.
Table 4.Responsiveness Domains’ Ranking Based on the Domain’s Importance, from the Points of View of Clients with Disabilities
a Primary, secondary and tertiary healthcare centers.
b Secondary-care centers.
As can be seen in Table 4, the relative importance of different domains of responsiveness is similar for outpatient and inpatient services, except for prompt attention and clarity of communication in the third and fourth ranks of importance.
Finally, 22 out of the total 340 reports on healthcare centers’ responsiveness (about 6.5% of reports) reported discriminative behavior in healthcare centers. Of this group of respondents, 20 people related the discriminative behavior to their disabilities, the 2 others related it to their social status along with their disabilities, and none of them related the reported discriminative behavior to their age or gender characteristics. Of 22 reported discriminative behaviors, 21 were reported in secondary-care centers. The prevalence rate for reporting discriminative behavior was 12.0% in secondary healthcare centers (8.6% for outpatient clinics and 16.2% for hospitals), 1.5% in primary healthcare centers, and there was no reported discriminative behavior in rehabilitation centers.
Regarding the disability type, among people with motor disabilities the rate of reporting discriminative behavior was 6.3% (17 out of 270 respondents), for people with vision disabilities it was 14.3% (3 out of 21 respondents), and 4.8% (1 out of 21 respondents) for people with hearing loss. The rate of reported discriminative behavior was 8.8% in public, 3.0% in private, and 7.1% in charity centers.
5. Discussion
Responsiveness of healthcare centers to people with disabilities in Ilam city was assessed in the present study. Results of the study showed that the total responsiveness score of healthcare centers was 83.5 ± 11.20, on a 0 - 100 scale, which seems acceptable. The responsiveness of secondary healthcare centers (clinics and hospitals) was less than primary and tertiary (rehabilitation) healthcare centers.
So far, several studies have focused on the responsiveness of clinics and hospitals which provide secondary-healthcare services (16-20) to the general population, and there are only a few articles about responsiveness of primary and tertiary healthcare centers or the responsiveness of healthcare centers to people with disabilities (21). On the other hand, studies have shown that people with disabilities might face discrimination in using healthcare services (22). Reviewing related literature revealed that the scoring system which has been adopted for calculating responsiveness when using the World Health Organization questionnaire was not the same in different studies, and scoring scales of 0 - 100, 0 -1 0, 0 - 5, 1 - 5, 0 - 4, and 1 - 4 have been demonstrated in reviewing results of previous studies using the World Health Organization’s questionnaire. Accordingly, in order to make it possible to compare the responsiveness of healthcare centers in Ilam city with other places, the scores which were reported in other studies were converted to a 0 - 100 scale score, and then the comparisons took place. Besides this problem in comparison of results of different studies, some studies used a binomial scale (good/poor, or acceptable/unacceptable) instead of a numerical score in summarizing the answers. However, for most of those articles, the cut-off points for categorizing scores into two groups of ‘acceptable or unacceptable’ were not reported at all. Thus, in order to compare the results of the present research with those studies, we categorized numeric results of the present research in two groups: The scores higher than 75 in the ‘acceptable’ and the scores of 74 and below in the ‘unacceptable’ category.
As shown in the results section, the mean responsiveness score of rehabilitation centers was 86.1, and according to the above-mentioned categorization, 85% of the clients with disabilities reported the responsiveness of rehabilitation centers as ‘acceptable’. In Alavi's study in 2018 in Tehran, 79.1 percent of rehabilitation centers were reported to be acceptable, and according to Alavi et al.'s study in 2018 in Tehran, total responsiveness score was 32.8 ± 8.00 (2.3 ± 0.68) (12). So, it seems that the responsiveness of the rehabilitation centers of Ilam city to people with disabilities is better than those in Tehran city.
5.1. Responsiveness of Public vs. Private Centers
Results of the present study showed that the private centers (90.3 ± 6.92) had better responsiveness than public centers (81.1 ± 11.37), which is in line with results of studies in other parts of Iran (Tehran, Isfahan, Hamadan, Yazd, and Ahvaz) and also in South Africa (12, 14, 16, 19, 20). It should be taken into consideration that the number of people who seek services from public centers is much higher than private ones due to the lower costs of services and relatively better financial accessibility of public centers (23). A smaller number of clients in private centers might have a role in the reported more favorable responsiveness in those centers. On the other hand, health providers in private centers might be more motivated in attracting and retaining their clients, as their financial resources come from the clients’ payments, just differently from public centers. The worst responsiveness has been observed in healthcare centers managed by charities (77.8 ± 8.64). The possible reason for lower scores could be managerial problems with supervision, service volume, or other unknown factors. This issue should be taken into consideration in further studies.
5.2. Responsiveness of Healthcare Centers in Different Settings
In the present study, responsiveness in outpatient centers was significantly better than that of inpatient ones. This difference might be due to the fact that people receiving inpatient services interact with the health system for a longer period of time. More extended periods of time could lead to more nonmedical needs and also more interactions with the staff, and so higher demands in different domains of responsiveness, which should be responded to by care providers. Results of some other studies in Iran (10, 24) are consistent with the results of the present study.
5.3. Performance of Healthcare Centers in Different Domains of Responsiveness
As a whole, the responsiveness score of the healthcare centers in the autonomy domain was lower than the other domains, which was in line with other studies in Iran (10, 13, 16, 25) and South Africa (26). This finding might be related to norms in healthcare practices, as patients do not routinely have to make decisions about the type of para-clinic tests or treatment they will receive. This may restrict the patient’s right to independent decision-making in their health management. Further qualitative research could reveal the reasons behind clients' low autonomy scores from the perspectives of the health care providers as well as the clients themselves.
Except for the domain of social support, which is relevant for inpatient settings, the highest scores for responsiveness went to prompt attention. The high scores for prompt attention might reflect the existence of a balance between health-care service demands and provision in Ilam city, good practices in appointment setting, or a lower expectation of promptness on the client’s part when seeking services for non-urgent situations such as rehabilitation. This finding is in line with the study of Mosallam et al. (27) in Egypt, where prompt attention was considered the best response in healthcare centers, but in other studies in Iran (13, 18) and South Africa (26) the best score was related to confidentiality.
In hospitals, the confidentiality domain of responsiveness gains lower scores than the other domains. The cause of this finding should be determined by further studies.
5.4. Experiencing Discriminatory Behavior
In this study, in 6.5% of visits to the centers, clients with disabilities experienced discriminatory behavior which they related to their illness/disability status and/or social class. The prevalence rate of experiencing discrimination was 5.4 percent among people with disabilities who attended outpatient services but 14 percent among those who were hospitalized. This finding might be related to more intimate interaction with the health system for a longer period of time, or more caring demands which increase the probability of experiencing discriminatory behavior over time. Further qualitative studies would help in better understanding the lived experience of discrimination in receiving healthcare services.
In Alavi et al.'s study (12) in Tehran in 2018, the rate of discrimination among clients from the general population was 3% and the respondents related it to their disease status and/or social class. In Piroozi et al. and in Sanandaj, it was also reported that health system clients perceived discrimination related to their type of disease and social class (1.2% for outpatient and 2.8% for inpatient services) (28).
It is noteworthy to say the results of this study provide a general insight about the responsiveness of health centers to people with disabilities as a whole. The research could not reveal whether any difference exists between responsiveness of these centers to people with disabilities with different degrees of dependency.
5.5. Conclusions
The findings of the present study showed that the responsiveness of healthcare centers in Ilam city to clients with disabilities is relatively good, but there are still areas to improve the responsiveness. Emphasis on increasing responsiveness in domains of autonomy, quality of basic amenities, dignity, and confidentiality is highly suggested to be priorities of the quality improvement program based on the results of this study. Charity centers and inpatient settings are a priority for such programs as they present less favorable responsiveness to people with disabilities.
Some of these quality improvement programs could be developing a clear patient-centered policy for providing choices in treatment plans, provision of staff training about how to help their clients to become aware of different choices in their health management, and take a more active role in this regard.
