A qualitative study of the barriers and facilitators for women with a disability seeking sexual and reproductive health services in Addis Ababa, Ethiopia

Abstract

Background

The need to advance the sexual and reproductive health (SRH) and rights of women with a disability is becoming more widely recognized. Regrettably, in low- and middle-income settings like Ethiopia, several barriers impede women with a disability (WWDs) from receiving SRH services and care.

Objectives

This study aims to explore barriers and enablers for women with a disability to access sexual and reproductive health services in Addis Ababa, Ethiopia.

Methods

A qualitative phenomenological study was conducted among the purposively selected reproductive age (18–49) group of WWDs living in Addis Ababa who were members of the Ethiopian National Association of Persons with physical disabilities and the Ethiopian National Association for Blind. Ten in-depth interviews, and 2 focus group discussions, were conducted using an interview guide. The analysis involved the use of both a priori codes (from the theory) and emergent inductive codes (from the question guide).

Results

In this study, several barriers were identified as keeping participants from accessing SRH services, such as unfavorable community views, organizational barriers in health facilities [HFs], financial limitations, transportation problems, and a lack of knowledge about the SRH programs that are available. The enabling factors that made WWDs access SRH services include social support and networking, access to education, positive providers' attitudes, and women's self-confidence/Assertiveness.

Conclusion

The study reveals that financial problems brought on by inadequate health insurance coverage, economic hardship, the expense of transportation to the health facility, and the lack of preferential treatment at the health facility are some of the hurdles that WWDs face while accessing SRH services and care. To address these problems and promote SRH access, measures should be taken to decrease financial barriers, improve physical access, and build strong relationships with the community, the church, and healthcare providers.

Background

Disability is a human rights concern for individuals with disabilities who face violations of their dignity, such as abuse and assault, and unequal access to health care and education. It was determined that people with disabilities were more vulnerable, and that discrimination against them in terms of their reproductive rights and needs needed to be eliminated [11]. According to estimates from the United Nations [23], one in 20 people, has a moderate or severe impairment, and 75% of these people live in developing countries. According to estimates from the World Bank and World Health Organization [WHO], over 15 million Ethiopians [17.6% of the total population], live with disabilities [10].

People with disabilities (PwDs) make up the population group that is most socially and economically disadvantaged. However, it is claimed that the needs of women with disabilities in terms of their reproductive health are usually not met or even addressed. [2]. According to Anderson and Kitchin, it is widely believed that (WWDs) are either asexual, uninterested in sex, unable to engage in sexual behavior, or sexual monsters unable to manage their urges and emotions. A person's experience of disability is complex and results from the interaction of several factors, such as personal, environmental, and health circumstances. Discrimination against individuals with disabilities occurs in a variety of ways in the healthcare sector. The lack of acceptable and accessible services, the absence of information in forms that are easily accessed, the inability to meet communication needs, and the restricted access to information and communication technology are a few of these. Another barrier is getting access to services for SRH [4]. According to the Convention on the Rights of Persons with Disabilities (CRPD), people with disabilities should have access to the same level of free or affordable health care and programs, including SRH services, as people without disabilities [17]. Restrictive cultural norms, service limitations, poverty, and gender inequality are factors that contribute to the difficulty women have accessing reproductive health services [23, 24]. Article 25 of the United Nations Convention on the Rights of People with Disabilities (UNCRPD) calls for governments to provide SRH services and care that are inclusive, accessible, and equally available to people with and without disabilities [14]. Ensuring that "no one is left behind" has been the focus of the Sustainable Development Goals (SDGs). One of the UN SDGs targets that may be achieved by 2030 is providing all individuals with disabilities with access to sexual and reproductive health care and reproductive rights (Targets 3.7 and 5.6).

There are few studies on Ethiopian WWDs on the barriers that they face to using sexual and reproductive healthcare services. The aim of this study is thus to examine the experiences and perspectives of WWDs regarding barriers and enablers to accessing sexual and reproductive health services in Addis Ababa, Ethiopia.

Methods

Study design and participants

The study was conducted in Addis Ababa, the capital city of Ethiopia, which is home to the headquarters of the Ethiopian National Association for the Blind (ENAB) and the Ethiopian National Association of Persons with Disabilities (ENAPD). This study used a qualitative, explorative research design and is based on an interpretative, phenomenological approach to science.

Eligibility criteria

The study included women who were physically impaired and had visual impairments. Their eligibility for the study was guaranteed by speaking Amharic, being at least 18 years old, having ever received SRH services, being a member of ENAB or ENAPD, and giving their consent to participate in the study. The women who met the eligibility criteria have been contacted by representatives of the ENAB and ENAPD in Addis Ababa. The primary researcher then received the names and contact information of potential participants. Following their consent to participate in the interviews, the researcher got in touch with each of the women and followed up often before conducting the interviews.

Data collection

A face to face Individual interviews and two focus Group Discussions [FGDs] were conducted with WWDs in Addis Ababa, Ethiopia. Women were selected through purposive sampling with maximum variation, meaning that the researchers identified and chose participants who could provide rich information about the phenomenon. A semi-structured interview guide was used for data collection. The in-depth interview comprised ten participants, five of whom were women with visual impairments and the other five of whom had physical disabilities. The interviews took place in the organization's private classroom. Data collection was done in tandem with data analysis. Interviews were conducted until the data reached saturation point, which was achieved when additional data failed to identify any newly emerging codes or themes. Each interview lasted forty minutes on average. Women who participated in an in-depth interview were not included in FGD, and vice versa. Two focus groups with fourteen participants were held. The focus groups included six or eight participants. Six members of the first focus group had physical disabilities, whereas eight members of the second group had vision impairments. The FGDs were audio recorded with the participant's consent, and notes were taken during the discussions to capture the participants' initial remarks. The FGD sessions lasted almost sixty minutes on average. The research was carried out between February 01 and March 30, 2023.

Data analysis

Thematic analysis was used for the study. All of the interviews were converted into English transcriptions based on the audio recordings and field notes. The principal investigator coded the data and was validated by the research supervisors. The analysis involved the use of both a priori codes (from the theory) and emergent inductive codes [from the question guide]. The three interrelated steps of data analysis—data reduction, data display, and data conclusion—were carried out using thematic analysis. Thematic analysis also involved analyzing the organization and content of textual data, recognizing themes in the data, classifying the themes, and interpreting the themes' organization and content. The authors had to first come up with, debate, and approve a codebook before they could employ this method. The theme codes were then manually generated using the codebook. Participants' quotes were provided verbatim to clarify the study findings.

Trustworthiness

The study findings were validated for trustworthiness using the credibility, transferability, dependability, and confirmability criteria established by Guba and Lincoln [13]. Member check, the authors' participation in the data analysis process, the authors' professional backgrounds and reputation, the authors' reflexivity, their quest for contradicting facts, and extended interaction with the data all contributed to their credibility. Transferability was achieved through purposeful sampling with maximal variance, providing a detailed description of the participants and the research process, and regularly reviewing the findings. Two external qualitative research experts reviewed the interview guide, raw data, and observational notes, and precise translations and transcriptions of the interviewers were used to ensure reliability. The authors achieved confirmability by documenting their reflexivity, bracketing, or relevant study events in a reflective journal they maintained during the research process. Lastly, the reporting of this study adhered to the 32 criteria recommended by the consolidated criteria for reporting qualitative research [25]

Ethical clearance

This study was approved by the Addis Ababa University College of Health Sciences institutional review board [CHS-IRB]. The protocol number is 10/MW/2023. The women were informed beforehand about the interview and that it would be audio recorded. All participants gave their signed written consent to the interviews after receiving full disclosure from the PI. The decision to participate in this study was made voluntarily. All participants' identities and other personal information were also kept private.

Results

Socio-demographic characteristics

The researcher recruited 24 disabled participating women in total for this study. Thirteen (54.16%) of the participants have vision problems, compared to 11 (45.83%) who have physical disabilities. The mean age of participants was 32 years and ranged from 22 to 48 years. Sixty-six percent were single and 29% had unemployed. Eighty-three percent of the participants had college and above.

Emerged themes

Following the analysis of the data from the in-depth interviews and FGDs, three main themes that are in line with the objectives of the research emerged: barriers for women with disabilities to access SRH services, enablers of women with disabilities to access SRH services, and recommendations for improving SRH services. The topics have been identified to provide in-depth descriptions of the factors preventing and facilitating the use of sexual and reproductive health services by women with disabilities.

Theme 1: Barriers of women with disabilities to access SRH services

The first theme that emerged in this study analysis was the Barriers to women with disabilities accessing SRH services which contain five categories. There are different impediments experienced by women with a disability while using sexual reproductive health services. In this study, it was found that most of the interviewed women with disabilities cited negative attitudes in families and communities, structural hurdles in HFs, financial constraints, transportation issues, and lack of information regarding SRH programs as their top challenges.

Sub-theme 1: Family/Community negative attitudes

The majority of participants stated that in the family and community, there is a general lack of knowledge regarding disabilities and SRH services for women with disabilities. Nearly all participants disagreed with the community's views that women's disabilities prevent them from having sex, getting married, or establishing a family.

"Most people in the community don't think that we can have kids and raise them properly." Interview 3, 26 years old

The general perception in the community is that a blind woman gives birth to a blind child and that a blind woman's family does not support her marriage and family life. Participant D in FGD 1

"I am a married disabled woman, and many people in my community consider that he married me because he is such a good man; my disability doesn’t prevent me from establishing a family…." Participant A in FGD 2.

Sub-theme 2: Infrastructural barriers in HFs

Participants claimed that it was very hard for them to enter health facilities and then get to consultation rooms, which are inaccessible to WWDs. They had difficulty using the stairs to enter buildings in healthcare institutions, and elevators mostly did not work. This was especially problematic for people with physical disabilities who use wheelchairs as there isn’t a ramp built with standards. The mothers who had problems moving around asserted that hospitals lacked beds that were appropriate for their needs. They required assistance to use the bed to get essential SRH services, including physical assessment, labor and delivery, and other maternal care.

WWDs are not covered by the health care system in our country. Consider the medical facilities' architecture, for example. The lack of ramps and customized examination tables, among other things, is a major issue in the HFs. 30-year-old Woman with physical disability, interview 5.

Disabled people must wait in the long queue at medical facilities just like everyone else. For someone like myself, using the restroom in these facilities can be quite difficult. 26-year-old Woman with physical disability, interview 2.

Sub-theme 3: Financial barriers

Money was another regular source of concern for most participants seeking SRH services. Women from blind associations voiced concern about the family's lack of assistance in paying for the SRH service as they feel it is unnecessary for them, or some of them are unemployed. Currently, seven of the twenty-four participants do not have a job. The participants revealed that they face financial difficulties ranging from transportation costs to service utilization due to their lack of funds and health insurance coverage. Some of the participants claimed that these issues kept them from getting medical care, including prescription medications, ultrasound examinations, and provider-recommended test results.

“My first pregnancy occurred when I was a student in the eighth grade. At that time, I had to abort the pregnancy because I wanted to continue my education. But I could not afford to pay for the procedure at that time, and my friend paid for it for me. [34–year–old woman, Interview 1].

"Since most PWDS have low incomes, they cannot afford to purchase even basic medications or sanitary products…" [30-year-old, Interview 5]

“…But I lack the necessary financial resources. I believe that having health insurance is essential….”[Interview 13, age 29]

Better financial standing opens doors to better SRH services, like HF delivery. [Interview 10; age 42]

Sub-theme 4: Transportation problem

Moving from place to place in the city is highly challenging for many WWDs due to the inaccessibility of the transportation system as well as the increasingly mounting transportation costs. The expense of transportation is extremely high for disabled women because we are low-income producers in society. The city administration does set a lower price with the special status. One woman spoke about a discriminating incident she had while taking a taxi:

“For disabled women, transportation services are uncomfortable. Getting into a taxi to go to SRH services is very challenging… [Interview 12, age 26]

“I can tell you from my experience that because of my disability, I rely primarily on contract taxis, which has been quite expensive for me…Sadly, the public transportation system was not designed for people with disabilities like me…”[Interview 7, age 35].

Sub-theme 5: Lack of Accessibility to Information about SRH Services

Each participant has a different level of awareness or understanding of reproductive health services. A few participants reported that certain SRH information is not fully accessible or nonexistent as the majority of the community (family, healthcare provider) felt they weren't necessary for disabled people. According to women from the Blind Association, there is no way for them to obtain information on SRH services because there isn't enough support (brail) available to them. They also claimed that there are no audio-based SRH materials available, nor are there any medical professionals or nurses who are sign language interpreters. Brochures on SRH services are also not available for WWDs in a health facility.

"I don't think that women in general have been sufficiently reached by SRH information, nor do I think that women with disabilities have easy access to it."[Participant F, FGD 2]

"I'm not familiar with birth control." At the time, I knew nothing at all. This is the reason I was unintentionally involved in a horrifying (and perhaps fatal) abortion [Interview 1, age 34].

Most family members are concerned that disabled women may become pregnant unintentionally or contract sexually transmitted infections…… because of this, they are unwilling to talk about SRH-related topics with us [Participant E, FGD 1].

Theme 2: Enablers for women with disabilities to access SRH services

The second theme that emerged in this study analysis was the Enablers of women with disabilities to access SRH service, including four categories: the role of Social support and network, Access to education increases awareness of SRH services, and Positive providers’ attitudes in ensuring access to SRH services.

Sub-theme 1: Social support and networking

The participants' testaments highlight the importance of social support and network structure in enabling PWDs to have access to SRH services. These factors include support from friends and family, the media, and membership in the association. Financial assistance, aid for mobility, information sharing, communication, and WWD protection should all be part of the support. The women from the blind association also reported that they had attended training on sexual and reproductive health issues for disabled women, organized by the Women Sector Department, which made it easier for them to get information and SRH services.

“My family and friends were supportive of me. They used to accompany me to ANC check-ups… …” [Interview 10, age 42].

“We receive SRH information through our Women’s Association, where many doctors visited and offered services related to sexual and reproductive health, including the use of contraception…..”[FGD 1, participant E].

Sub-theme 2: Access to education increases awareness of SRH services

According to this study, women with higher levels of education own an advantage over their less educated counterparts, as they can learn more about the issues, advantages of availing SRH services, and outcomes.

"In my opinion, my college education helped me much. I can read to obtain SRH information from books or the internet … [Age 30, Interview 5].

"I believe that for a woman to effectively utilize reproductive health services, she must be educated and self-confident……” [Interview 7, age 35]

Sub-theme 3: Positive Providers' Attitudes

Health professionals usually struggle to understand the needs of people with disabilities as they are not formally trained to provide care to this population. Despite the challenges clients faced in accessing SRH services, a few participants mentioned that they had a positive experience with their providers.

“I had a positive experience, and the provider was quite helpful when I delivered my baby in the facility…” [Interview 1, age 34]

Some of them [providers] were polite in the public health facility; the nurse who assisted me was polite … She told me about my pregnancy and the timing of my next appointment.

Theme 3: Suggestions for improving SRH services provision

The third theme in the analysis of this study was recommendations for improving SRH services. These recommendations are divided into five categories and include giving PWDs health insurance coverage, educating PWDs about SRH services, training healthcare providers on SRH service provision for PWDs, addressing disability in national SRH policy, laws, and budgets, and making SRH services available to PWDs near mosques and churches. According to the participants, these measures make it easier for a disabled woman to access sexual and reproductive health services in the future.

Sub-theme 1: Health insurance coverage for PWD

According to the participants, spending money on medical care is a big challenge, particularly for disabled women. Insurance may boost service uptake because it lowers the cost of SRH treatments for the disabled.

“We can get benefit from having health insurance, so the government should better make special arrangements for us ….” [Interview 3, age 26]

"… I lack the required financial resources. I believe that having health insurance is essential to get better services….” [Interview 13, age 29]

"To increase SRH service accessibility, the government and stakeholders should take action on the SRH of people with disabilities."[Interview 5, age 30]

Sub-theme 2: Training for Healthcare Professionals on SRH services for women with impairments

Some of the participants said that the unethical behavior and negative attitudes of healthcare personnel toward women with disabilities resulted in an unjustifiable lack of access to SRH services in public health facilities. Nearly all participants recommend that training on SRH services for women with disabilities should be provided to healthcare providers.

"Persons with disabilities have the same needs for SRH services as everyone else. However, people with disabilities regularly have their needs neglected by the providers. They need to be trained to address those needs." [Interview 5, age 30].

"Providers routinely ignore the needs of people with impairments; they need to receive training." [Interview 10, age 42]

Sub-theme 3: Education in SRH to increase awareness of SRH services

For women with disabilities to have access to SRH services, SRH education and information are essential. Some participants stated that it is challenging to obtain SRH information and suggested the provision of SRH education to raise awareness among this key population. Most people with disabilities live in rural areas with limited access to basic health services and information.

"My friends and I participated in the SRH course and gained a lot of knowledge about the services provided. However, it can be difficult for a rural disabled woman to find out about SRH, thus it's crucial to address them. [Interview 4, age 26].

"No PWD-specific brochures with information on SRH services have been developed. For this group of persons, accessing SRH information via HFs pamphlets on SRH Services may be quite beneficial. For SRH information, using phone platforms such as radios, cellphones, disability corners, and short-digit numbers can be beneficial. [Interview 5, age 30].

"I claim that increasing awareness is the first step towards increasing the number of impaired women who benefit from SRH's programs. [Interview 7, age 35]

Sub-theme 4: Including disability issues into national SRH laws and policies

Disability must be recognized in the national policies and regulations to provide SRH services to women with disabilities in an effective manner. Many participants expressed the need for comprehensive assistance and recommended that disability issues be addressed in national SRH laws and policies.

My sister, a doctor, and my family are the ones who informed me about SRH. The government takes little action in this regard. For example, is it not realistic to assign the HFs to a nurse or other medical professional who speaks sign language? … [Interview 5, age 30].

Sub-theme 5: Provide PWDs access to SRH services in the vicinity of churches and mosques

In our setting, there are a lot of disabled women who reside close to mosques and churches living in poverty. Even though they are at risk of non-partner sexual assault; yet many of them are unaware of SRH services. A few people proposed providing SRH services to this disadvantaged group.

"I suggest providing reproductive health services to poor women who reside close to churches and mosques. “[Interview 12, age 26].

Discussion

The current study examined the barriers and facilitators facing disabled Ethiopian women seeking Sexual and Reproductive Health [SRH] services. Many barriers to accessing SRH Services have been identified by the WWD included in this study. Women with disabilities face higher barriers than women in general when it comes to SRH services and care [3, 5]. Abuse and violence against women with disabilities have been documented in high-income countries; these reports are congruent with the care that has been reported in previous studies [7, 9, 20]. Negative attitudes of family members are reported by the current study, similar to women from Low and middle-income countries [LMICs] [20]. Belief in PWD's asexuality is a phenomenon that has previously been documented in high- and low-income nations [18], which is consistent with the current findings.

Among the barriers to SRH care identified in the current study were issues related to transportation, inaccessible infrastructure, and unawareness of SRH services, similar to the previous findings [7, 16, 18]. Many of the participants mentioned infrastructure problems, which is consistent with other findings. Stairs are common in health facilities buildings, which reduce accessibility. Exam tables lack adjustability, which makes them less effective. Wheelchairs are too small and do not have the necessary adjustments to fit in toilets [6, 8, 12].

The affordability component is the capacity to pay for SRH services and care without having to pay for them out of pocket or deal with other financial difficulties [22]. Cost of care and transportation were two factors that the current study reported while determining affordability. The current study found that accessing care by WWDs was financially challenging. This was also evident in other contexts, such as Uganda [1], Cameroon [3], and Senegal [19], where women with disabilities faced exorbitant care expenses. Many WWD in Ethiopia have access barriers due to the high cost of care, which is consistent with previous research conducted in the Philippines [15]. Transportation costs were another issue. Transportation to the facilities is costly as WWD's dwellings are often placed a distance from the facilities [12]. Besides, WWD usually needs a companion, which doubles the cost of transportation [21]. Because of the interconnections between gender and disability, women with impairments typically face compounded vulnerabilities, such as higher rates of assault and poorer rates of access to social and economic resources. Women with impairments perform worse than their male counterparts in all economic and social service metrics [5].

Inappropriate communication, a lack of provider training, and unfavorable provider attitudes were among the other barriers to communication that the current study documented. One major barrier to WWD receiving RHS was communication, particularly for women who had speech and hearing problems. In most situations, sign language interpreters are not available [6, 7, 12].

Similar to earlier research conducted in Ghana [5], social network contacts with family and friends and provider support were the facilitators that made it simpler for WWDs to seek SRH services and care.

Strengths and limitations of the study

This study is the first to look at the barriers and enablers that women with disabilities encounter while trying to access sexual and reproductive health care in Addis Ababa, Ethiopia, with the aim of guiding future research. It sheds light on the availability of SHR services for women with disabilities, an issue that is understudied. The study would add significantly to the body of knowledge on the factors influencing the use of SRH services and the SRH service of women with disabilities. However, the study focused only on the perspectives of women with visual impairments and physical limitations. The perspectives of service providers and health system planners were not included in the study. The scientific community needs to look at the factors that encourage and hinder the use of SRH services from the perspectives of families, health professionals, and other stakeholders.

Conclusion and recommendations

In summary, WWDs have the same sexual feelings and desires as the general public and need care related to their sexual and reproductive health, but Ethiopian society—health professionals, service providers, and families—has disregarded their concerns. The disregard for the needs of women with disabilities for their sexual health is made even more evident by the intersectionality of discrimination based on both gender and disability. WWDs are not only stigmatized as dependent, unproductive, and undesirable, but they are also often seen as unfit to perform the traditional roles of housewife, mother, and care giver. They consequently become mostly invisible. They are not suitable for marriage or other close relationships because they cannot fit the social definition of what society considers being normal.

The study also reveals that financial difficulties brought on by inadequate health insurance coverage, economic hardship, the expense of transportation to the health facility, and the lack of preferential treatment at the health facility are some of the hurdles that WWDs face while accessing SRH services and care. To address these problems and promote SRH access, steps should be taken to lower financial barriers, improve physical access, and forge strong relationships with the community, the church, and healthcare providers.

Facilities for sexual and reproductive health should be more inclusive, and barriers that uphold the stereotype that persons with disabilities are asexual and do not require SRH services should be taken down. Through the media and educational venues, the general public must be made aware of the rights and SRH requirements of WWDs.

It is also advised that Disability associations and development partners who support women with disabilities should enhance their training programs for WWDs and providers of SRH services. There is no information or concern about disabilities in the healthcare providers' training programs in the curriculum currently in use. Providing special training to healthcare personnel is thus imperative to enable them to effectively manage and interact with individuals who have impairments in their professional capacities. Promoting nondiscrimination and ensuring that people with disabilities can actively and effectively get SRH care on an equitable basis requires an understanding of the unique challenges that they experience at the policy, service, community, and family levels.

Policies requiring the inclusion of WWD in SRH ought to be developed and implemented. These policies ought to take into account cutting expenses and/or giving WWD financial support for transport and services. To cut down on needless referrals, all health professionals should receive training on providing treatment for people with WWD, with a focus on common problems [7].