Sampling and research participants

Working with Spina bifida and Hydrocephalus Association of Uganda (SHAU), a national coordinating body, we purposively identified and selected young people, adolescents and caregivers (Parent/ caregiver or a sibling - those involved in the care and management of children with spina bifida and hydrocephalus) from the association registers who belong to the Central region. The association supported the first contact with potential participants, and these participants were contacted and information about the study shared with them. Participants were informed about the study procedures and made to understand that participation is voluntary and refusal to participate would not attract any penalty or adversely impact their relationship with the Association. One participant declined to participate but all the other participants contacted accepted the invitation and were scheduled for consenting and interviews according to their date, time, and location preference. All participants in the study had a possibility of movement despite the condition and none of the participant was immobilized in bed. This qualified all participants to be eligible for the study.

Ethical considerations

The study obtained ethical approval from the Mildmay Uganda Research Ethics Committee (REC Ref 0710–2020) and the Uganda National Council for Science and Technology (SS703ES).

Before conducting the interviews, participants who were 18 years or older provided written informed consent, while those under 18 gave written informed assent and had their parents or guardians provide consent. Additionally, all participants gave consent for audio recording. To maintain confidentiality, children were interviewed in a private space away from the caregivers and family members. Participants were assigned pseudonyms, and any identifiable information was excluded from the transcripts. Children who had difficulties in reading, were given easy to ready study documents. The researchers provided comfort breaks for participants during data collection to refresh, manage fatigue and sensory overload. This was to ensure that participants remained comfortable, engaged, and able to contribute meaningfully to the study.

Data collection

Qualitative in-depth interviews (IDIs) were conducted face to-face by an experienced researcher to guide the data collection process as a formative evaluation means to explore the sexual and reproductive health challenges among adolescents and young people living with SBH. Participants were recruited through purposive sampling with the help of the association co-ordinator between March 2021 and February 2022. The IDIs were held in a conducive place that was safe, neutral and with minimal distractions for the participants and the researcher. This place was either suggested by the interviewee or preset by the interviewer in the community.

We conducted 30 IDIs with the adolescents and young people living with SBH and 30 IDIs with the Caregivers (parents, siblings involved in taking care of the AYP living with SBH) in the central region urban (Kampala & Wakiso) and Peri-urban and Rural (Mukono & Mityana) areas of Uganda using semi-structured interview guides (S1 File and S2 File) to obtain in-depth descriptions insights about their SRH challenges.

Data collection was conducted in English and/or Luganda (a commonly used dialect in Central Uganda). All the IDIs, conducted by the first two authors (DN, AS) were audio-recorded using a digital recorder and averagely lasted 60 minutes. The recordings were transcribed verbatim and those in Luganda were translated to English and reviewed by the third author (RN) to ensure accurate translation and transcription to avoid losing original stories.

We employed a saturation-based approach to determine the sample size of 60 participants (30 caregivers and 30 adolescents and young people with spina bifida) for the interviews. We initially aimed to purposively interview at least sixty participants and continued data collection until no new themes emerged. Forty participants (20 caregivers and 20 adolescents with Spina bifida) were interviewed, and thematic saturation was achieved. Twenty additional interviews (10 caregivers and 10 adolescents with spina bifida and hydrocephalus) were conducted to confirm the themes and insights obtained from the initial interviews.

Data management and analysis

In-depth interviews were audio recorded, transcribed verbatim, and then translated into English

for a hybrid approach of inductive and deductive thematic content analysis [19] by two researchers (DN and AS) experienced in qualitative methodology and disability research.

Transcripts were read through for familiarization and coded manually by DN and AS. To ensure coding consistency, the developed codes were shared with the study principal investigator (RN) to facilitate collaborative thematic analyses throughout [20]. Transcripts were then imported to NVIVO 12 software to assist in coding and identifying themes.

Themes and sub-themes were continually reviewed and refined to capture emerging new codes. Quotes were captured to highlight thematic areas and increase our understanding of the context.

Sexual violence and abuse in the society

Adolescents and young people living with SBH reported experiencing some form of sexual violence and abuse from the community members these children attributed these provocations to their disability, as the perpetrator often referred to the child’s disability when carrying out the maltreatment. For example, one of the participants stated:

“The vulnerability I see is more about us girls with this condition [spina bifida and hydrocephalus, because there is a disabled girl who is one of my friends that was raped because of her inability to protect herself and she has spina bifida.” Female, person with disability.

In some cases, these perceptions of the community that people living with spina bifida and hydrocephalus do not deserve to live has exacerbated the violence as one of the caregivers narrate the agony her child face in the society.

“You see one of the risks or the vulnerabilities they have is that some members in the society look at them as people who are not important in the society. You have heard of stories of them being raped, sexually abused because they know they cannot fight back.” Female caregiver

Some participants believed that the differences in the treatment of children with disabilities could be attributed to the greater participation of children with physical impairments in society, such as going to school and participation in daily income activities.

Incontinence and stigma

Young people with spina bifida and hydrocephalus reported experienced incontinence as challenge to their sexual health that affects their self-worth, emotional well-being, and their overall quality of sexual life. The leakage exposes them to many physiological problems such as embarrassment, guilt, anxiety, fear about sex and this makes many of them to avoid getting in relationships.

“For me I feel scared to have a boyfriend… I have spina bifida and one of the challenges is that I cannot control my urine flow. Because of this [incontinence] I feel it is normal not to have a boyfriend.” Female, Person with disability

“One thing is that, if you want to have sexual intercourse and your partner picks that smell of the urine, she will just leave you.” Male, Person with disability

Some participants in romantic relationships faced stigma and bullying from their partners’ families, who disapproved of their relationship due to the participant’s disability. The in-laws viewed the participant as a burden and did not want their child to be “encumbered” with someone with a disability, as one participant shared.

“His family bullied me, and I went through depression for like two months. They were like, how can you bring someone with a disability [spina bifida and hydrocephalus], she is going to be a burden in all your life.” Female, Person with disability

“…once the person gets to know that you have a disease [spina bifida or hydrocephalus], they will just run away and they will never return.” Female, Person with disability

Overwhelmed by the circumstances and the stigma, some caregivers also noted that stigma grossly affects the children’s esteem and develop negative self-concept that influence their life, for example self-isolation, fear to engage in health relationships and resort to other mechanisms like masturbation for sexual pleasure.

“I told him that he will get sick if he continues doing that [masturbating], but he refused. I even do not know if he will produce children when he gets a wife because according to what people say, masturbation kills the potential of someone to produce children, yet he has done it for over 20 years. He tells me he masturbates because he fears to approach women for sexual relationships.” Female, caregiver

Inability to feel sexually empowered

Male participants were shy to discuss their sexual functionality especially when asked if they always encounter penile rigidity. However, while interacting with the caregivers and the siblings of the people living with spina bifida and hydrocephalus, most them were concerned about the sexual life of their children and they noted that most of them have never experienced an erection just like any other normal male child and this is the major sexual challenges they are experiencing.

“He is becoming a teenager now and he does not have a penile erection like other boys and this might be a challenge in his sex life.” Female caregiver.

“…most times I see his private part in between his thighs and even when he is urinating, he sits and pushes himself to urinate. I have never seen him erecting like a normal man and that is the only challenge I see.” Male Sibling

“I share a room with him, but I have never seen him [child with spina bifida and hydrocephalus] when he has reacted [with a penile erection] like men, you understand.” Male Sibling.

Some of the caregivers reported male fathers do not spare time and talk about all these sexual issues with their children and mothers believe this affects these children. They added that male and female children with SBH need the sexual and puberty education like the other normal children to understand their body changes or any other challenge they face. These concerns highlight the need for open and honest communication between caregivers, particularly fathers, and children with spina bifida and hydrocephalus about sexual health and development. Providing puberty education and support can help alleviate concerns and empower individuals with SBH to understand their bodies and make informed decisions about their sexual health.

Coerced birth control uptake

Forced birth control uptake was another major finding reported by some of the female participants during the interviews. Most of them due to their life challenges and experiences they are forced by their caregivers to take birth control methods without an informed decision and this is meant to stop them from having children especially as one of the participants narrates in the excerpts below.

“They forced me to get a family planning injection for birth control so that I do not give birth to a child who will be a burden to my parents like me.” Female, Person with disability

While other parents hope and pray for their children to have successful families of their own, caregivers of children living with spina bifida and hydrocephalus wish for the opposite- they hope their children do not give birth to children as this will be an added responsibility onto them that would further burden both the child and themselves. Caregivers perceive that these children are entirely dependent, and they cannot take care of themselves, and let alone raise a child if they gave birth.

“I would not want my child to be sexually active or to give birth… Because it will be like I am the one who has given birth again. You see, she cannot grip; she cannot do anything on her own. I am the one who does everything for her, so if a man does something like that [makes her pregnant], it is like he is damaging my life.” Female -caregiver

Negative Socio-cultural beliefs and practices

Adolescents and young individuals with spina bifida and hydrocephalus face significant obstacles due to harmful cultural attitudes, which often prevent them from participating in the workforce and make them vulnerable to sexual exploitation.

“I went for a job interview and my boss told me that, in his culture, when you sleep with someone with a disability, all the bad luck will go away. I was like, if you do not want to give me your job, I will leave because after that [sexual encounter], what will my dignity be like.” Female -person with disability.

When it comes to maternal and childbearing stages some of them are told false beliefs that they cannot conceive and this exposes them to sexual activities with men to prove if they cannot conceive as some of the caregiver explains in the excerpts below.

One child with spina bifida and hydrocephalus told me that people were saying that she will not be able to conceive and give birth to a child, this forced her to have sexual intercourse with a man who was far older than her so as to prove and see if what people were saying was true. Female -caregiver

“People think that since we have spina bifida and hydrocephalus, we are mentally ill, and we do not have any sexual and reproductive health needs at all. They do not even call us for the youth meeting or even for community outreach services.” Male -Person with disability.

Lack of or inaccessible SRH information and services

Both male and female respondents noted inherent societal expectations and mis-perception that people with spina bifida and hydrocephalus do not need SRH services including SRH information. Consequently, there is over-protection of children with physical disabilities especially girls through denial of information as the following quotation illustrates:

“In relation to reproductive health, I have not received any help from the health workers or even the family members. Because even our parents do not allow us to go to hospitals” Male -person with disability.

Lack of information is in part influenced by the caregiver and the sibling they stay with at homes. Some deliberately deny them the right to accessing the information or to take them to places where they can access the information and the services as some of the participants narrates in the excerpts below.

“He does not know those things [sex related issues] or services related to SRH because it is you to take him to the hospital.” Female -sibling

“She might be having little knowledge related to puberty and reproductive health. The only time I have taken her to hospital is for a blood test after that instance of the boy trying to rape her. Since then, I have never taken her back, for things concerning HIV testing or protection against STDs. She does not know them at all.” Female -caregiver

Additionally, the access to sexual and reproductive information was affected by the parent’s limited knowledge about these services, and the widespread belief that SRH services are not suitable for people with spina bifida and hydrocephalus due to their short life expectancy as one of the care-givers stated.

“Some parents lack knowledge and feel it is not necessary for their children [with spina bifida or hydrocephalus] to participate in sexual and reproductive health services because they might not live for long due to their health condition.” Female -caregiver

As a result, young people who are pregnant face challenges in obtaining antenatal and childbirth care services. Participants in the study highlighted the limited availability of healthcare facilities, noting the absence of specialized care services for antenatal and postnatal periods, as well as the lack of welcoming facilities, such as adequate labour beds in health units.

“Another thing is even when we get pregnant, our health facilities are not suitable for us. For example, the beds in the labour ward are not suitable for mothers with spina bifida or even hydrocephalus [un-adjustable beds], they are meant for normal people which also becomes a challenge for us to access such services.” Female -person with disability

“I cannot access specialized services. For example, when I go to the hospital, I am tired of seeing these general medical doctors. One day they did a scan, and I asked a doctor, ‘are my ovaries ok? Am I able to carry a child?’ He was like what!!! Do you mean you can carry a child? He was amused.” Female -person with disability.

Poor menstrual health management

Adolescent girls and young women living with spina bifida and hydrocephalus issues expressed strong negative emotions towards their menstrual experiences, describing feelings of discomfort, anxiety, and self-consciousness about bleeding accidents while socializing with friends in school. They also reported inadequate social support and lack of access to proper menstrual products, leading some to resort to using unsanitary materials, as shared by one participant.

“I regretted having periods at an early age, I did not have enough information and right menstrual materials to use. I resorted to using newspapers because I feared to ask for support from my friends.” Female, person with disability

“She lacks the right menstrual materials to use and there are other girls like her that lack materials, which worries them. They end up using unhygienic materials.” Female - caretaker.

The negative emotions of “hate” and “fear” associated with menstruation can have far-reaching consequences for girls’ self-assurance, self-worth, and social interactions during puberty. Furthermore, the erosion of self-esteem during menstruation can have a ripple effect on other reproductive health issues, as girls who lack confidence may struggle to express their needs and concerns, fearing judgment and stigma from their environment, leaving them marginalized and unsupported.

Challenging stigma and promoting disability-inclusive SRH services

A major theme emerging from this study is the role of societal attitudes in reinforcing the SRH challenges faced by adolescents and young people with spina bifida and hydrocephalus. Many participants emphasized that societal misconceptions falsely assume that individuals with spina bifida and hydrocephalus do not require SRH services, leading to their exclusion from comprehensive SRH education and care [3,18]. This marginalization perpetuates poor health outcomes, lack of awareness, and increased vulnerability to sexual exploitation. Addressing these barriers requires a shift in societal perceptions through community education campaigns, disability-inclusive SRH policies, and proactive involvement of healthcare providers in addressing the unique needs of individuals with SBH.

Improving access to healthcare and policy implementation

Limited access to antenatal and childbirth care services for pregnant young women with SBH was another critical issue identified in the study. Participants reported difficulties in accessing healthcare due to unfriendly facilities, lack of specialized maternal care, and inadequate policy implementation. These findings align with a previous qualitative study conducted in Kampala, which reported similar barriers for individuals with disabilities [17]. The absence of accessible antenatal and postnatal care services contradicts internationally recognized SRH rights [25,26], further entrenching social exclusion. To address this, policies aimed at improving SRH access for individuals with spina bifida and hydrocephalus must be actively implemented and enforced to ensure tangible benefits for this population.

The need for comprehensive sexuality education and disability-inclusive programs

The study highlights a significant gap in SRH education and information for adolescents and young people with spina bifida and hydrocephalus. The lack of specialized training and resources means that individuals with SBH often struggle to navigate their sexual health and relationships, increasing their risk of negative health outcomes such as sexually transmitted infections (STIs), HIV, unintended pregnancies, and sexual exploitation (24). Integrating disability-specific SRH education into mainstream programs is crucial to equipping individuals with the knowledge and skills necessary to make informed decisions about their sexual and reproductive health.

Strengths and limitation of the study

This was a qualitative study that involved a small number of participants; therefore, the results may not be empirically generalizable to all the adolescents and young people with SBH in Uganda but rather conceptually generalizable. We recruited and enrolled a limited number of adolescents and young people with spina bifida and hydrocephalus based on the organization registers for central region urban (Kampala & Wakiso) and Peri-urban and Rural (Mukono & Mityana) areas of Uganda thus these may not be representative of all persons with SBH disability in Uganda. It is likely that the challenges faced by adolescents and young people in central region of Uganda might be different from those experienced by adolescents and young people with spina bifida and hydrocephalus living in other regions of the country. We neither used complex theories nor sought to develop theory derived from the data but used robust framework analysis techniques to generate the major themes.

Our study provides critical insights into the sexual and reproductive health challenges faced by adolescents and young people with spina bifida and hydrocephalus in the central region of Uganda. While the findings may not encompass all experiences of adolescents and young people with spina bifida and hydrocephalus, they offer a crucial perspective on the specific difficulties this marginalized group encounters. This research highlights the urgent need for tailored policies and interventions to address these challenges. By shedding light on these challenges, our study advocates for a comprehensive approach to SRH education, services, and support, contributing to the empowerment and well-being of adolescents and young people with SBH. The findings help to highlight the need for improving SRH Environment for adolescents and young people with spina bifida and hydrocephalus as well as changing health the cultural and community attitudes towards them. Additionally, participants were open in talking about their sexual and reproductive health challenges which allowed for the development of novel concepts and enabled the attainment of thematic saturation, a prominent strength of the study.