Sexual and Reproductive Health Needs of People Living with Disabilities: Family Planning Practice and Need in Gusau, Zamfara State, NW Nigeria

1.1. Background

Recently, the World Health Organization estimated that about 16% of the world’s population is living with some form of disability, with about 80% of these people living with disabilities (PLWD), living or residing in developing low- and middle-income countries, with 60 million living in Africa alone [1-5]. In Nigeria, about 15% of the country’s 195 million people live with some form of disability [6-9].

Despite sexual and reproductive health (SRH) being an important component of target 3.7 of goal 3 of the global sustainable development goals, throughout the world, PLWD regularly faces discrimination and restricted access to healthcare, including access to Sexual and Reproductive Health services (SRH) like contraception when compared to their able-bodied counterparts [1, 10]. Therefore, we cannot achieve “Good Health and Wellbeing for All” in an inclusive society by 2030 if we cannot address the health needs of PLWD, including their SRH needs. Moreover, health is a recognizable human right, and excluding health needs of PLWD is a violation of their human right [10, 11].

The global standard of care for SRH states that contraception must be provided to all who choose to use it. The chosen method should align with the physical and mental capacities of individuals with disabilities and their partners, ensuring it meets their personal needs, lifestyle choices, and overall perception of well-being [12]. Regardless, it is well known that there is very limited access to the ideal SRH services, including family planning and contraception, by PLWD for various reasons. For example, PLWD is notably absent from healthcare centers worldwide because those SRH clinics regularly do not provide access to effective communication methods such as sign language, alternative information formats such as Braille, audio, or plain language for PLWD, making it a significant barrier to accessing and utilizing SRH services that uniquely only disadvantages PLWD [13, 14]. Another well-known reason why PLWDs are missing in SRH clinics worldwide is due to the absence of the necessary physical structure to accommodate them, such as elevators, wheelchair ramps and other assistive devices [4, 15, 16]. As a provision of all these disability-friendly services usually rests with policy and decision-makers, it implies that those policymakers have not prioritized the healthcare needs of PLWD [4, 17]. Multiple studies have reported that some PLWD are also absent from family planning clinics globally due to a lack of information on SRH, such as being misinformed or misled by their non-disabled peers on what SRH are obtainable from the available health systems [13, 18, 19].

Other past global studies have highlighted how PLWD living in conservative settings are more likely to be socially isolated, limiting their access to family planning services, resulting in a greater likelihood of being sexually abused and having unwanted pregnancies, with the limit in access to SRH care resulting in unsafe abortions [20, 21]. In socially and culturally conservative societies of sub-Saharan Africa, studies have reported a general belief that PLWD are either asexual or unlikely to find a life partner to marry or bear future children [15, 21-23]. Unsurprisingly, this has resulted in low utilization of SRH, especially modern contraceptives, by women with disabilities in those societies who are more likely to conform to traditional conservative social norms even though disability and fertility are not usually organically related [21-23]. These traditional, cultural, gender and societal norms are predominant in NW Nigeria, including Gusau, where the people are more likely to be conservative Hausa-Fulani Muslims, less likely to be literate and more likely to conform to traditional gender norms when compared with many southern Nigerian cities who are less likely to hold conservative views to accessing SRH services [6-9, 24]. Other African continental studies have also reported other factors limiting access to and uptake of SRH by PLWD, such as poor knowledge range of services available and fear of adverse effects of modern contraceptives, as significant barriers to access and utilization of SRH services including contraception and family planning by PLWD [25-27]. These sub-Saharan African studies have also reported how PLWD are unable to access family planning services due to stigmatization and discrimination from healthcare providers [15, 28, 29].

In summary, the SRH needs of PLWDs have been overlooked by both the healthcare system and the communities where they reside, leaving PLWDs marginalized with consequent poor health outcomes as compared to their non-disabled peers. It is therefore important to explore and understand the full range of factors affecting the choice of uptake and utilization of contraceptive and family planning services by PLWD in this culturally conservative setting.

1.2. Rationale/ Justification for Study

Gusau resides in a region of sub-Saharan Africa where PLWD are often excluded or neglected from the general discourse of SRH access and where the burden of disability is high, potentially leaving them at a higher risk of unwanted pregnancies, consequent unsafe abortion and greater risk of the socioeconomic burden and limitations associated with having children. However, there is no local or regional study from NW Nigeria, a culturally and religiously conservative region of Nigeria, that has explored the various factors and barriers faced by PLWD as they access SRH services from the available health system. Therefore, the study aims to assess the SRH needs and practices of PLWD as they encounter the locally available Federal Medical Centre, Gusau, Northwestern, Nigeria, and to determine the factors responsible for the low level of family planning service utilization among them. The findings from this study will also help inform policymaking that affects the structural and health system barriers affecting access to SRH services by PLWD living in similar contexts.

1.3. Objectives

The overall objective of this assessment was to assess the sexual and reproductive health needs of PLWD by assessing their family planning or contraceptive needs and practices.

The specific objectives were to assess:

1. Family planning needs among people living with disabilities living in Gusau Zamfara state, NW Nigeria.
2. Barriers and opportunities for family planning service utilization among PLWD.
3. The attitudes and beliefs of PLWD to utilizing family planning methods.

1.4. Definition of Terms

2.1. Study Design

The study was a descriptive cross-sectional study with thematic analysis that utilized a qualitative data collection methodology involving qualitative data from focus group discussions. Permission was obtained from the Zamfara State Health Research Ethics Committee of the Ministry of Health on September 29^th, 2022; recruitment of participants was completed by November 2022 and data was collected in December 2022.

2.2. Study Setting

The study was conducted with the various community disability-support organizations in Gusau. Gusau is the capital of Zamfara state, which is located in Northwestern Nigeria. The different location centers for disability support and community development in Gusau include Fa’ida Nursery, primary and secondary school, Gusau, and Nabilco Global links. Both are physical locations that house different community-based organizations that support all PLWDs as defined above. The organizations are the Zamfara Lepo Association, Zamfara Laba Association, Zamfara blind Association, Zamfara Handicap Association, Zamfara Community Guragu Association, Deaf Teachers Association of Nigeria Zamfara Chapter and the National Association of the Deaf Zamfara Chapter. These organizations primarily provide advocacy support services, and life, and vocational skill training designed to support everyday living and economic independence for PLWD in Gusau city.

2.3. Study Population

The study sample population included adult PLWD residing in Gusau, affiliated with disability support organizations, male and female genders, married and not married with bodily disabilities: hearing impaired, visually impaired, and physically disabled, including post-lepromatous disability.

Inclusion criteria: Participants were selected based on the following:

1. Women in reproductive-age groups (18 - 51 years) who are living with a disability
2. Enrollment or membership in a local community disability-support organization in Gusau. (This is because the PLWD population in Gusau is widely dispersed throughout the city and more likely to be found with cohort peers of similar disability at the community disability-support organization locations, making FGD most feasible).
3. Women with dual disabilities, such as visual and hearing impaired, were recruited.
4. Those who were able to give verbal or written informed consent

Exclusion Criteria:

1. Those who were ill and unable to communicate or follow the study protocol.
2. Those who were outside of a disability-support organization (excluded because they are more likely to be dispersed and outside of their peer cohort with a similar disability, making our chosen method of data collection FGD not feasible for those outside of community-support organizations)

2.4. Data Collection

We employed a qualitative research methodology using Focus Group Discussions (FGD) as the sole method of gathering data. Study participants were recruited using purposive sampling techniques to only sample PLWD who were members of the local community support organizations for the study. This method allowed us to collect broad information from similar disability, marital and gendered peers of PLWD.

3. STUDY LIMITATIONS AND MITIGATIONS

Because the study focused on recruitment of key informants from only disability-support groups, it is possible that some PLWDs in the general population were missed. The study relied on data from FGDs; it is possible that some biases were introduced by participants (social desirability and groupthink bias) and/or facilitators (moderator bias). Both were mitigated by using seasoned moderators who were the same gender as the participants in the FGD groups. The study authors also acknowledge the possibility of narrow views and social desirability bias from the key informants, which were similarly mitigated by interviewers being from the same gender, the use of their community disability center as a study location and the use of probing questions to dig deeper. The authors also acknowledge the possibility that some information might have been lost in translation by utilizing sign language interpreters for study participants with hearing impairments, although this was mitigated by using experienced sign language interpreters.

4. ETHICAL CONSIDERATION

The authors confirm this research was conducted on humans by the Helsinki Declaration of 1975, as revised in 2013 (http://ethics.iit.edu/ecodes/node/3931). Ethical approval was sought from the Zamfara State Health Research Ethics Committee of the Zamfara State Ministry of Health (folio # ZSHREC01092022/105). Permission was obtained from the administrators of the disability-support organizations to approach their program members for the study. We obtained informed consent from each individual participant included in our study. Each participant was offered a hard copy of the informed consent document in Hausa or English, then had it read to them verbally (for all non-literate, all who were hard of seeing or post-lepromatous and could not write a signature) or using Sign language (those hard of hearing). Research investigators were open to participants about the benefits, risks, study procedures and purpose of the study and allowed time to ask questions and have them answered. The participants were informed that the results of the research will be shared with policymakers with the hopes that it will be used to improve policy decisions and service provisions for persons living with disability while they seek care from the health system, thus improving universal and equitable access to healthcare. Study participants were repeatedly informed of their right to withdraw from the study at any stage of the study process with no consequences or disadvantage during future interactions with the healthcare system or the disability support group that they were members of. They were also informed of grievance procedures should they have a problem with the conduct of the research.

The confidentiality of research participants was maintained throughout the research procedure by collecting data in private settings, identifying data during analysis and ensuring the anonymity of the participants throughout. In this religiously conservative setting, we have taken care to especially maintain the privacy of all female participants in the study.

5.1. Biographical Profile of Study Participants

A total of two FGDs were conducted with married male and female PLWD who were hard of hearing. There was one experienced facilitator who knew sign language and 2 key informants, each representing hearing-impaired men and their female counterparts. All participants were within the reproductive age group (15-51 years).

5.2. Findings

Hearing-impaired individuals, males and females, echoed high knowledge of different family planning methods and sources of services with a sense of high acceptance of modern methods.

The preferred method among hearing-impaired men was withdrawal, while their female counterparts preferred to use hormonal implants.

The economic hardship of having and raising children was the main motivation for the uptake of family planning among hearing-impaired men and women. Maintaining financial stability was attributed to keeping family size manageable. One respondent said, “…more than 80% of the people are now using family planning because they don’t want too many children; they cannot take care of their responsibilities”.

Both groups expressed facing communication barriers in healthcare settings such as the absence of sign language interpreters to assist with clinic visits. One woman expressed concern about being ignored by healthcare providers who cannot communicate with them; “… (when) they notice that we are deaf, they ask us to wait and that is all, they forget us and most of us easily get angry and leave. So, to be sincere, we faced a lot of discrimination from some doctors”.

Another man reported, “…they should at least employ one (sign) interpreter who will be called whenever a deaf patient goes to the hospital or clinic for his/her needs. This will help both the service providers and (the deaf) to communicate effectively”.

B. Knowledge, Practice, Need and Challenges of Family Planning Among Married Visually Impaired PLWD

5.3. Biographical Profile of Study Participants

A total of two separate FGDs were conducted with 5 married visually impaired men and women. All participants were within the reproductive age group (15-51 years).

5.4. Findings

Married visually impaired individuals, male and female, had high awareness and knowledge of family planning, using both traditional and modern methods. Both genders reported barriers to family planning including financial issues, communication barriers, limited access to services, and lack of awareness tailored to their needs. They suggested solutions like providing Hausa interpreters as many were not literate enough to use braille (nor were they offered) or spoke English (the official language in Nigeria, including in health settings), training healthcare providers on their specific needs, offering social and financial support, and ensuring free medical care and special consideration that accommodates their loss of sight.

The visually impaired men disclosed discussing the methods with their wives and often sought professional medical advice together. Importantly, visually impaired women preferred not to use family planning due to the desire for more children to help them navigate the world; as one woman put it, “…they (children) are a replacement for my lost sight”.

C. Knowledge, Practice, Need and Challenges of Family Planning Among Physically Challenged PLWD Including Post-Lepromatous Physical Disability

5.5. Biographical Profile of Study Participants

A total of three FGDs were conducted with physically disabled men and women. One of the FGDs was conducted with married physically disabled men, one with married physically disabled women, and the last was conducted with married post-lepromatous physically disabled men. All participants were within the reproductive age group of 15-51 years.

5.6. Findings

Overall, the non-lepromatous physically disabled participants, regardless of gender, showed a high level of knowledge and awareness of family planning methods and services. Modern methods such as pills, injectables, and implants were commonly used among them. The preferred method among females was the implant due to its ease of use, longer-lasting quality (years) and perception of safety. Only one participant reported a negative experience with implants associated with very heavy menstrual bleeding that required hospitalization.

Both genders preferred to obtain their contraceptive and family planning methods from clinics and hospitals in their proximity, with financial stability, limiting the number of children, and child spacing to promote maternal and child health identified as the reasons for seeking family planning. The study also found that the commodities for family planning were readily available, and service providers often showed a positive attitude toward the physically challenged, treating them well. Barriers to access among this group included negative attitudes of some healthcare providers, stigma and discrimination. The creation of awareness to address stigma among healthcare workers and the general public was identified by the participants as a key issue to address.

In a separate analysis of physically challenged post-lepromatous men, it was found that their knowledge and understanding of family planning were poor compared to all other groups. However, some of them preferred modern methods due to their ease and safety. Economic reasons, spacing of children, and improving maternal and child health were identified as the most pressing family planning needs among post-leprous individuals. The attitude of leprous individuals toward family planning was fair, and they were satisfied with the service provided by healthcare providers. One said, “… they (healthcare providers) always treat us quickly and with kindness in the clinics”. Lack of awareness, poverty, communication barriers, and the need for privacy during healthcare encounters were identified by them as major barriers; while access to free medical services, privacy, and awareness campaigns through media were similarly suggested by the participants as solutions to improve the utilization of family planning services.

D. Knowledge, Practice, Need and Challenges Of Family Planning Among Unmarried Physically Challenged PLWD

5.7. Biographical Profile of Study Participants

One FGD was conducted with single, unmarried, physically disabled men and women. All participants were within the reproductive age group of 15-51 years.

5.8. Findings

The females of the group denied using family planning but were knowledgeable of the methods of modern and traditional contraception available and where to get them. The women also expressed a high desirability to use contraception when they marry but emphasized that spousal consent was important before they access or use them.

Both genders agreed that financial hardship was a good motivator to using contraception to limit family size. They also described a generational divide in that they feel they accept modern contraception because they are young and aware of the changing economic times more than older generations.

Both genders, however, admitted to witnessing instances where their disabled peers were ridiculed for asking to use family planning or contraception. One woman reported, “… when some people see a PLWD trying to access family planning, they start gossiping and saying- look at this disabled! What is she going to do with Family planning? And as a result, they (PLWD) feel discouraged and stop visiting the hospital”. Other major barriers to access identified were difficulty physically accessing health facilities with no wheelchair ramps, language barrier and rude medical providers.

Both genders suggested addressing the barriers mentioned and that health centers should employ a disability liaison officer who will specifically cater to the needs of PLWD when they encounter the health system for any reason.

6.1. Barriers and Opportunities for Family Planning Service Utilization among PLWD

The commonly used modern family planning methods/ contraceptives among female respondents included implants (commonest used method), injectables, and pills, which were consistent across different disability categories and countries, as reported in previous studies across the African continent [33-35]. The least utilized modern family planning methods among respondents were condoms and calendar methods, as observed in recent studies in Southern Nigeria and Ethiopia [9, 35], while withdrawal was the least utilized traditional family planning method, similar to the recent findings from a study in Ibadan, SW Nigeria [9, 35].

Some female participants in our Gusau study reported occasionally using traditional methods such as herbs, beads (karfu and laya), and seeds but discontinued their use due to perceived ineffectiveness in preventing pregnancy and potential risk of harm. Still, we did not find this in other studies, suggesting this was a localized cultural phenomenon unique to Gusau women.

6.2. The Attitudes and Beliefs of PLWD to utilizing Family Planning Methods

Although most female participants in our study had a positive attitude towards modern contraception, only a few were currently utilizing any modern contraceptive method, citing poverty as the main reason. Poverty was a common reason to not use by women living with disability in other poor settings of Africa and Asia [36-39].

In Gusau, all the young unmarried women denied ever using contraceptives compared to a Southern Nigeria study where about a third of adolescent girls living with physical disabilities utilized modern contraceptive methods [8, 9]. These differences may be attributed to factors such as cultural differences in encouragement of sexual-related discussions among young people, including disabled individuals, public and community awareness about the importance of family planning, and the fact that Southern Nigeria is not as religiously conservative when compared to NW Nigeria [8, 9]. Similar findings regarding low family planning use among unmarried women of reproductive age living with disabilities were observed in culturally conservative Ethiopia and Senegal but not in more culturally liberal South Africa or Zimbabwe [15, 21, 23, 40].

In this study, we discovered that the primary reasons for seeking family planning among PLWDs were financial stability, limiting the number of children, spacing childbirth, and promoting maternal and child health, which are similar to the motivations of PLWDs around the world, regardless of region or situations, including in humanitarian settings, which is increasingly becoming important in Gusau that is a new home to thousands of internally displaced people fleeing violence from more rural towns and villages of Zamfara state [20, 35, 39, 41].

Factors associated with higher family planning utilization among PLWDs in our study included free medical services, positive service provider attitudes towards PLWD, increased awareness, and higher educational status. Although the hard of hearing was the most educated and literate group identified in our study, they still found the healthcare system lacking, not prepared to engage them in sign language or have readily available health resources to share. These experiences were echoed widely across other studies in low- and middle-income countries where the health system was also unprepared to accommodate the SRH health needs of often literate and educated deaf and hard-of-hearing PLWD in those settings [42-44].

The attitude of service providers towards PLWDs was found to be mixed in our study. Some participants described helpful and appealing interactions with healthcare workers, similar to the Nigerian demographic health survey of other regions of Nigeria [7]. Other participants described multiple instances of rude, ridiculing and discriminatory attitudes from healthcare workers, similar to studies in Uganda and Nepal that identified the attitude of healthcare providers as a major barrier to the utilization of family planning services by PLWD [45, 46]. Our study hints at the status of women and gendered social norms that affect women's participation in healthcare settings and advocating for themselves in society. Throughout our study, we have had to hide the participation of women to protect them from the social stigma associated with talking about sexuality, which hints at their overall ability to relay their concerns and address their SRH needs in the health system. This exaggerated intersecting health and gender response is found in other recent regional African studies (Senegal, Nigeria, Ethiopia), although none was reported as pronounced as in Gusau [9, 12, 24, 30, 32, 35].

Lastly, the study also identified factors relating to stigmatization, discrimination, financial and economic disadvantage and communication barriers as the main obstacles to accessing family planning services and information among most participants, consistent with the findings from studies conducted in other sub-Saharan cities of Ghana, Kenya, Uganda, Zimbabwe, South Africa and Southern Nigeria [6, 9, 18, 20, 35].

The proposed policy solutions provided by most respondents in this study included health facilities provision of sign language interpreters for those hard of hearing to utilize in health facilities, providing credible health information designed specifically for consumption by PLWD according to their respective abilities to read, access and understand the material, and the improved attitudes of healthcare workers; all the recommendations align with numerous best practices highlighted in other studies in the African region and around the world, to meet WHO standards [1, 5, 10, 16, 19, 39, 42].

Further research is needed to determine the most effective policies to address the non-physical barriers to care access, such as community and healthcare worker stigma, gendered social norms and discrimination of women among PLWD in low resource settings such as Gusau (Annex 1-2) (Tables 1-9).