Perspectives of care providers on obstacles to healthcare access for people with disabilities in Ethiopia: a qualitative investigation

Abstract

Background

Despite having similar healthcare needs to non-disabled individuals, people with disabilities in Ethiopia face significant challenges accessing healthcare services due to existing barriers. This study aimed to explore these barriers from the perspectives of care providers in primary healthcare facilities.

Methods

Qualitative research was conducted with care providers in Dire Dawa to identify barriers to healthcare access for people with disabilities. Thematic analysis was used to categorize data into themes.

Results

Eight healthcare providers from four service departments participated in eight in-depth interviews and two focus groups. Six themes emerged: physical barriers, financial difficulties, non-accommodating diagnostic facilities, care providers’ attitudes and capacity, communication barriers, and lack of access to health information. Non-confidential and non-dignified care was also identified as a barrier.

Conclusion

The study highlights important barriers that prevent people with disabilities from accessing primary healthcare services. Addressing these barriers is crucial for achieving disability-inclusive healthcare services. This research can serve as a starting point for further work in this area to promote equitable healthcare for people with disabilities.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-024-11822-2.

Background

Approximately 1 billion individuals worldwide, comprising 15% of the global population and 20% of the world’s impoverished, are estimated to have disabilities [1]. In Ethiopia, the prevalence of disability is estimated to be around 2.95%; however, this figure is likely an underestimate, with some organizations, such as the WHO, suggesting it is closer to 17.6% [2]. All previous national reports relied on a single direct question about “disability,” which likely captured only extreme and permanent disabilities, resulting in very low prevalence rates [3].

Despite the United Nations Convention on the Rights of People with Disabilities (CRPD) [4] emphasizing equal access for PWDs to all areas of society, including mainstream health services, people with disabilities (PWDs) in Ethiopia often face exclusion from basic social and economic opportunities such as education, health, and employment, exacerbating their already dire situation and rendering them more “hopeless” and marginalize [2, 3].

Access to health services, healthcare, and rehabilitation services has been recognized by the World Health Organization (WHO) as both a human rights issue and a key development issue [5]. However, in Ethiopia, like many developing countries, accessing appropriate and affordable healthcare is already a challenge for many, and people with disabilities (PWDs) face even greater difficulties accessing these services and bearing the burden of health costs [1]. Furthermore, although the healthcare needs of PWDs are complex, many healthcare providers do not consider how their diverse lived experiences impact access to care when designing services [6].

Therefore, this study aims to use exploratory methods to gather more evidence on the factors that shape and define access to primary healthcare services by identifying unique and recurring themes within the narratives of care providers on the barriers to accessing health services for PWDs in Ethiopia.

Methods

The study utilized naturalistic qualitative inquiry to gain insight into the context and phenomenon of accommodating persons with disabilities in public health facilities, as perceived by healthcare providers.

A purposeful sampling approach was employed to recruit eight participants from a pool of ten contacted, based on their expertise and credibility in order to elicit a broad range of relevant issues. The participants were drawn from Outpatient Departments (OPD), Maternal and Child Health (MCH) services, and Antiretroviral Therapy (ART) clinic, comprising four clinical nurses, three midwives, and one health officer. This diverse representation of professional disciplines ensured a comprehensive perspective on experiences, views, and opinions. Participation in the study was voluntary, and informed consent was obtained during the scheduling process.

The study was conducted in two stages. The first stage involved conducting in-depth interviews with healthcare providers, while the second stage involved using focus group discussions among four healthcare providers in two separate sessions. A semi-structured interview schedule was used, with open-ended questions designed to understand the barriers of access to health services for persons with disabilities from healthcare service providers’ perspectives. The interviews were conducted face-to-face and recorded on a digital recorder, with in-depth interviews lasting an average of 39.8 min.

The focus group topic guides served as a framework for documenting the adaptations that care providers frequently implemented to accommodate patients with disabilities. Additionally, they highlighted the challenges that these providers collectively identified as needing improvement to enhance the inclusivity of outpatient and continuous care services for individuals with disabilities. Data collection took place over a two-week period, spanning from December 18, 2021, to January 5, 2022.

To ensure the integrity of the information gathered, audio recordings of the interviews and focus discussion groups (FDGs) were transcribed verbatim. This meticulous transcription process aimed to capture the precise expressions and intentions of the participants. The authors, who are proficient in the local language and possess a strong understanding of healthcare dynamics, translated these transcripts into English while maintaining semantic accuracy.

For data organization and thematic analysis, NVivo 11 for Windows^® was employed. The analysis commenced with an extensive reading of the transcripts to identify key concepts, which led to the creation of initial codes. These codes were then indexed and refined as the data were further explored, allowing for the generation of preliminary themes and sub-themes. The authors engaged in a thorough review of these initial themes, mapping out the sub-themes to clarify and define the core themes that emerged from the data.

Ultimately, each theme was articulated in a manner that conveyed the perspectives of healthcare providers regarding access to services for persons with disabilities (PWDs) at public health facilities in Dire Dawa. To provide depth and context, significant excerpts from the transcripts were included under each theme, offering rich descriptions of participants’ experiences, insights, and opinions.

Throughout this analytical process, all steps were meticulously reviewed and approved by both authors to ensure rigor and reliability. To further bolster the credibility of our findings, we shared the initial transcripts and the themes derived from them with the participants. This collaborative approach allowed us to verify the accuracy of our interpretations and ensure that their voices were faithfully represented in our analysis.

Results

Among the participants in the study, there were a total of eight individuals, comprising five males and three females. The male participants were aged between 31 and 43 years, while the female participants ranged from 29 to 41 years old. All participants were qualified health professionals, each possessing a minimum of five years of experience in the healthcare field. This diverse group brought a wealth of knowledge and expertise to the discussions, reflecting a range of perspectives shaped by their extensive backgrounds in various healthcare settings. Their qualifications and experience were crucial in providing valuable insights into the topic at hand.Through analysis of the interview and focus group data, the study identified significant barriers that hinder persons with disabilities from accessing primary healthcare services. The data also revealed the experiences shared by the participants during individual interviews and how these experiences influenced their approach to caring for disabled clients.

Six themes emerged from the analysis, including physical barriers in health facility infrastructure, a healthcare system lacking financial support to accommodate persons with disabilities, diagnostic facility limitations, challenges in care providers’ attitudes and capacity to provide comprehensive care for persons with disabilities, communication and access barriers to health information, and non-confidential and non-dignified care.

Physical barriers to health facility compound and service department buildings

The accessibility of healthcare facilities is dependent on the design of the infrastructure and the type of impairment. Unfortunately, this is not a priority in many public health facilities. The participants in the study also acknowledged these barriers, as one nurse in an Antiretroviral Therapy (ART) clinic stated: “The health center is not designed to accommodate clients with physical impairments. This is a universal problem in all facilities. It is difficult for severely ill people to get here, let alone someone who uses a wheelchair or is blind. The stairways and uneven pavement are even more challenging in the backyard where the ART clinic is located.”

Although policies and legislation, such as the Ethiopian Building Proclamation of 2009, require public buildings to be accessible and free of barriers for persons with disabilities, the lack of regulations to enforce compliance has hindered implementation even a decade after ratification. Discrimination and neglect towards persons with disabilities in healthcare service delivery are evident in the existing obstacles that prevent them from exercising their legislative rights.

A healthcare system lacking financial mitigations to services to accommodate persons with disabilities

The participants acknowledged that patients with disabilities were at a higher risk of vulnerability, particularly in terms of their medical conditions being more prone to complications. The participants also observed that financial and economic vulnerability often played a role in the medical issues faced by people with disabilities. An OPD Nurse participant during the discussion noted: “Many of the disabled patients are not only disabled, they are also in a lower socio-economic group. So sometimes there’s the third component, which is sort of their interface with society and the variety of negative attitudes they have to contend with. … They are vulnerable medically, they have difficulty covering their bills and are prone to disrespect and abuse, especially if they came alone.”

In Ethiopia, the majority of healthcare services are funded through out-of-pocket payments, which means that both disabled and non-disabled individuals must bear the cost of transportation and medical bills. However, this is a significant challenge for most persons with disabilities in Ethiopia, as many lack the financial means to cover these expenses. According to Tirusew (1995), 60% of persons with disabilities in Ethiopia were unemployed, highlighting the financial constraints faced by this population. During the discussion, participants emphasized the importance of addressing these financial barriers, as they prevent many disabled individuals from accessing necessary healthcare services. As one OPD health officer explained; “those who have sufficient financial resources or supportive families are able to access private healthcare facilities and pay for assistance as needed. However, most disabled patients do not have these opportunities, which makes them particularly vulnerable to disease and delays in seeking care.”

Although public health facilities in Ethiopia offer waivers or exemptions from service fees for impoverished clients, including those with disabilities, the process of obtaining these grants can be challenging. Persons with disabilities face additional bureaucratic hurdles, making it even more difficult for them to access the healthcare services they need.“disabled clients are advised to obtain a service fee waiver or exemption letter from their kebele administration, as they may not have the financial means to cover laboratory and diagnostic fees. However, many visiting disabled patients are not registered residents of a specific kebele, which means they are ineligible for welfare schemes and cannot obtain the required waiver letter. As a result, accessing healthcare services becomes a daunting task for them.” (An OPD Nurse).

In Ethiopia, there are certain priority programs such as maternal and child health (MCH) that offer free-of-charge services. However, additional diagnostic procedures such as ultrasound are not covered by these modalities. This poses a significant challenge for persons with disabilities (PWD) when public health facilities do not provide such services and they have to seek them at private facilities. “The inability to pay for diagnostic procedures often leads PWD clients to forego essential care during their clinical management. For instance, pregnant women are advised to undergo at least one ultrasound during their pregnancy, but since public health facilities do not offer this service, they have to go to private facilities where the cost is beyond their means. Consequently, many pregnant women discontinue their antenatal care follow-up at public health clinics and only return for delivery.” (A midwife who participated in a focus group explained).

Individuals with disabilities and their caregivers frequently experience financial difficulties because of limited employment opportunities, and they may also face challenges accessing subsidies and insurance programs that could help offset healthcare expenses. However, due to their impairments, people with disabilities typically require more extensive medical care, resulting in higher healthcare costs compared to individuals without disabilities.

Barriers to diagnostic facilities leading to substandard clinical care procedures

The inaccessibility of health facilities and equipment at health centers poses a significant barrier to accessing healthcare. Patients with disabilities are less likely to receive comprehensive care according to the standard of care due to various reasons. Some participants mentioned that they sometimes only conduct partial examinations when a full examination is deemed too difficult or inefficient. For example, a nurse from the outpatient department stated, “Patients with mobility issues are challenging for us to do a physical examination… If it’s difficult to do a physical examination because you have to transfer them, and you have to get someone to help you to do that, you are going to be more reluctant to do it. So, you may not provide all the assessment as you do for a non-disabled patient.”

Participants in focus groups also admitted that many disabled patients had not received a complete physical examination if there was no one to assist. They also acknowledged that they were more likely to rely on patients’ verbal complaints and proceed with treatment without a physical examination.

Challenges in care providers’ attitude and capacity to provide comprehensive care

Some of the participants’ experiences highlight a lack of sensitivity towards their clients with disabilities. Health care providers may exhibit insensitivity, either intentionally or due to a lack of understanding about the needs of people with disabilities [7]. When care providers adopt a paternalistic approach with patients with disabilities without their consent, it can be viewed as coercing them into care. The participants acknowledged that this was somewhat the norm for patients with intellectual disabilities.

When asked if they had encountered any challenges in providing care to clients with disabilities, a midwife shared, “Sometimes, there are mentally disabled pregnant women… And it is difficult to attend to the delivery of such mothers. For example, she may consent to a per-vaginal examination but then refuses when the probing begins… In such cases, we usually refer them to Dilchora hospital.” When questioned about the special facilities available at Dilchora hospital for delivering services to pregnant women with intellectual disabilities that led to the referral, the same midwife remarked, “There are no special services at Dilchora hospital. But since they have enough staff, they have the ability to physically restrain her for delivery. For instance, I know of one pregnant mother whom we were ‘unable to handle’ and referred to the hospital, where she delivered while being restrained by six people… Here, we would not have been able to do anything, and there are risks for both the mother and her baby.”

The study’s findings suggest that negative attitudes and behaviors, such as verbal and physical abuses, are prevalent among service providers towards people with disabilities. This is evident in practices like using physical restraints during labor and using derogatory terms to describe women with psychosocial disabilities [8]. There is also an underlying assumption that people with disabilities are asexual and incapable of marriage and childbirth [9].

Additionally, healthcare providers in the focus groups acknowledged the lack of disability-inclusive clinical care in their professional training at medical schools. “[we] were trained to care for disabling conditions like psychiatry but not other clinical conditions not directly related to people with disabilities. The health professionals should receive on-the-job training to provide care for patients with disabilities so that they can receive the medical services they need.” (An ART nurse ).

During the focus group discussions, all participants agreed that treating disabled patients respectfully, acknowledging that “disability could happen to anyone, including, a parent or sibling”, would make persons with disabilities “find the service rendered surpass their expectations” and would “benefit them both psychologically and clinically.”

However, it was noted that most care providers lack awareness of national laws and healthcare strategies that outline the rights of people with disabilities to receive fair and high-quality health services. Furthermore, many operate based on compassion rather than professional responsibility.

Barriers in communication and lack of access to health information

The lack of effective communication between healthcare providers and patients with disabilities presents a significant challenge. This is particularly evident for individuals with speech and hearing impairments. In both focus groups, participants highlighted that consultations with these patients often involve a third party, such as a sign language interpreter. However, many healthcare providers lack proficiency in sign language and do not have access to sign language interpreters, leading to inadequate communication [7]. Participants also described their experience where they were unable to fully comprehend their clients’ complaints: “I remember one time I wrote a female deaf patient a stool examination when she was demanding a pregnancy test… I thought she was describing vomiting, abdominal discomfort and distention… she was trying to tell me that she feared she was pregnant.” (OPD Nurse).

Patients with disabilities often struggle to have their medical concerns accurately understood by healthcare providers. Physicians frequently encounter difficulties in obtaining a comprehensive medical history from individuals with disabilities, leading to inaccurate assessments and prescriptions [10].

The barriers to effective communication extend beyond direct interactions between healthcare staff and patients to include indirect communication through brochures, prevention campaigns, and awareness materials. For instance, individuals with visual impairments face challenges in understanding information presented in visual formats, while those with hearing impairments are unable to access messages conveyed through radio broadcasts [11]. This is acknowledged by participants during the focus group discussions: “During the recent Acute Watery Diarrhea (AWD) outbreaks in the city, we saw a number of deaf AWD cases… they had no idea about the disease, although the regional health bureau had made extensive media campaigns as part of prevention and control measures.” (OPD Health Officer).

Furthermore, the combination of high illiteracy rates among people with disabilities and their limited access to assistive technologies, alongside the inability of healthcare providers to effectively communicate health information to these individuals, hinders the effectiveness of preventive and health promotion services.

It is essential for patients with sensory impairments to have access to their diagnoses and receive the same level of professional consultations as the general population. During discussions, participants in both focus groups highlighted the scarcity of healthcare providers trained in sign language, a collaboration between the regional health bureau and Cheshire Home Services, Dire Dawa office: “there are few care providers who were trained by Cheshire [Cheshire Home Services, Dire Dawa] to enable them communicate through sign language with patients having hard-of-hearing… I can say this has improved visits of clients with such impairments at our health center.”

However, such accommodations have yet to be availed in all service departments. They also recommended the scale up of these efforts as services to specific healthcare needs of persons with disabilities are available only when the trained care provider is on duty: “the number of professionals trained in the two rounds [by Cheshire] are not enough as some have already left our facility. There are now only two of our colleagues who know sign language. If I could find one, I could use his help. Otherwise, it is challenging to provide the service.”

The regional health bureau shall also be responsible to facilitate such trainings regularly so as these accommodations are availed at each service department. Otherwise, it will be disappointing for PWD clients if they are not getting the service that was once provided to their needs for there is no more a trained healthcare provider who can attend to their needs.

Non-confidential and non-dignified care

Confidentiality is more apparent in provision of healthcare demanding private conversations (for example, family planning, voluntary counseling and testing, antiretroviral therapy, etc.) and/or involving intimate clinical procedures (sexually transmitted disease, abortion care, etc.). One participant described her experience when providing family planning services: “It is sometimes difficult to ask sensitive questions (for example her sexual practices or abortion history) in the presence of a third person… I know it is uncomfortable and disrespectful to my client…it is unethical, but I have to know this to consult her on the appropriate family planning” (MCH Midwife).

Discussion

This study explored the challenges faced by care providers in delivering healthcare to individuals with disabilities in Dire Dawa. Key barriers identified include physical accessibility issues, inadequate care, limited access to health information, and negative attitudes from healthcare providers. Physical obstacles stem from insufficient facilities and poor clinical standards. Attitudinal barriers arise from a lack of understanding of disabled patients’ needs and disrespectful treatment. Communication challenges include difficulties with sign language and a lack of accessible health information.

Notably, physical accessibility emerged as a significant barrier; if individuals cannot enter healthcare facilities, other challenges become moot. Despite the Ethiopian Building Proclamation (2009) mandating accessibility in public buildings, compliance remains weak, resulting in inadequate accommodations in many health facilities built after the legislation. The International Classification of Functioning, Disability, and Health (ICF) framework emphasizes the importance of an accessible environment for enabling participation in community life and accessing services [12]. The presence of poverty within the community creates a significant barrier to accessing healthcare in the study area and across Ethiopia. The low socio-economic status of individuals with disabilities presents a major challenge, as financial constraints hinder their ability to obtain necessary healthcare services. This is particularly problematic for those with specialized healthcare needs, exacerbating their health conditions. As a result, the right to healthcare remains a distant dream for many individuals with disabilities in these contexts [3, 13].

Access to healthcare is often challenging for people with disabilities, even in affluent countries. However, in poorer countries, the difficulties are even more pronounced, including attitudinal barriers [14]. In Australia, women with physical disabilities undergoing breast cancer screening expressed distress over the attitudes and communication of healthcare professionals. They felt that they were not being treated in a manner that recognized their human rights to dignity, respect, and self-determination [15]. The study found that negative attitudes of healthcare providers were a significant barrier to accessing healthcare, ranging from difficulties in communication and understanding patients to instances of verbal and physical abuse. Coupled with the marginalization by family and communities, these negative attitudes suggest that addressing attitude change at the individual and health facility level is a crucial challenge for people with disabilities in Dire Dawa.

Healthcare providers globally often lack training in caring for individuals with disabilities, which can negatively impact patients’ healthcare experiences and outcomes [16]. Individuals with disabilities emphasize the need for healthcare professionals to recognize and address their sexual and reproductive health needs, acknowledging their status as sexual beings [9]. In Dire Dawa, the lack of disability-inclusive training for healthcare providers has resulted in significantly poorer health outcomes for individuals with disabilities compared to non-disabled individuals, leading to decreased motivation to seek and utilize healthcare services [7].

In Dire Dawa, individuals with disabilities encounter significant communication barriers with healthcare providers, more so than non-disabled patients. The absence of health information in accessible formats hampers their ability to obtain crucial disease prevention and health promotion resources. This issue extends beyond individual cases, as even during public health emergencies, information remains inaccessible to those with disabilities [13, 17].

The Convention on the Rights of Persons with Disabilities (CRPD) mandates minimum accessibility standards for public facilities [18]. Ethiopia’s legislative framework, including the Building Proclamation (2009) and the Council of Ministers Building Regulation (2011), aims to uphold this commitment [19, 20]. While the Federal Ministry of Health (FMoH) has begun incorporating these standards into new health facility designs, it has not yet established enforceable minimum accessibility requirements for health service providers.

Since 2011, Ethiopia’s Community-Based Health Insurance (CBHI) program has aimed to protect against catastrophic health expenditures. The Health Care Financing Strategy for 2022–2031 seeks to reduce out-of-pocket costs and enhance fee exemptions for vulnerable populations, highlighting the need to consider the complex healthcare needs of individuals with disabilities in these plans [21].

Article 25(f) of the CRPD advocates against discriminatory denial of healthcare based on disability [18]. The Reproductive Health Strategic Plan (2021–2025) aims to improve equitable reproductive health services and family planning access for individuals with disabilities [22]. Additionally, the National Reproductive Health Commodity Security Strategy (2022–2026) includes training for service providers to deliver non-judgmental and client-centered reproductive health services.

Health information for the general public must also be made accessible to individuals with disabilities in a timely manner and at no extra cost, as stipulated in Article 21(a) of the CRPD [18]. To address this, the National Health Promotion Strategic Plan (2022–2026) includes initiatives like creating audio-visual materials with sign language for noncommunicable disease messaging, while the HIV National Strategic Plan (2023–2026) aims to develop disability-friendly education materials. Establishing comprehensive standards for accessible health information would address the challenges identified in this study.

This research underscores the necessity for increased awareness of the daily challenges faced by care providers in meeting the healthcare needs of individuals with disabilities. Incorporating diverse perspectives is essential for creating conditions that facilitate optimal healthcare access for this population [23].

Limitations of the study

The study offers an initial look at the specific needs and experiences of individuals with disabilities from the viewpoint of care providers. However, it is important to note that no single study can encompass all there is to learn about a particular topic, and this study is no different. The sample size and sampling frame used, along with the absence of accurate disability prevalence data, make it challenging to evaluate the study’s power, which is crucial for generalizability. The findings in this study reflect the perspectives of healthcare providers and may not be sufficient to draw broad conclusions about the significant barriers that people with disabilities face in accessing mainstream health services. It is important to recognize the wide variation among people with disabilities, and further research is necessary to delve deeper and understand which barriers are most critical when considering context, type of impairment, and gender.

Conclusion

In resource-limited settings like Ethiopia, individuals with disabilities face significant barriers to accessing healthcare services, impacting not only the patients themselves but also the overall healthcare system. This research lays the groundwork for future studies aimed at enhancing healthcare access for people with disabilities within the Ethiopian context. The findings can guide strategic decision-making to foster the inclusion of individuals with disabilities in critical areas such as healthcare and employment.

To gain a deeper understanding of the challenges faced, conducting comprehensive cross-sectional studies on healthcare access at a larger scale is essential. Such studies could provide extensive data on the prevalence of discrimination and other obstacles that hinder access to healthcare services. This information can then be leveraged to develop tailored, locally relevant healthcare solutions.It is hoped that this study will act as a catalyst for further research in this area, ultimately leading to significant improvements in healthcare access for individuals with disabilities.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Authors’ contributions

Bereket Damtew took the lead in designing and planning of the research, and analyzed and interpreted the transcripts of participants’ interviews. Muluken Yigezu performed the transcription and coding of data from the focus groups, and was a major contributor in writing the manuscript. Both authors read and approved the final manuscript.

Funding

Not applicable.

Data availability

Data will be available upon request from the corresponding author.

Declarations

Ethics approval and consent to participate

In order to conduct this research, the authors tried to address the Declaration of Helsinki Ethical principles for medical research. Ethical clearance was obtained from the institutional review board (IRB) of Dire Dawa University before the start of the study. voluntary written and signed informed consent was obtained from all study participants prior to start data collection. Finally, all collected information was coded and locked in an isolated room before entering the computer and locked by password after entering the computer. The confidentiality of the information was kept throughout the study process and the information was used only for the study purpose.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.