Sexual and reproductive health challenges among adolescents and young people with spina bifida and hydrocephalus disability in Uganda: A qualitative study.
Ndekezi D, Ssemata A, Ganshanga A, Nalugya R • PloS one • 2025
Adolescents and young people with spina bifida and hydrocephalus in Uganda face numerous sexual and reproductive health challenges—including sexual violence, stigma, incontinence, coerced contraception, and lack of accessible information—that are 'often overshadowed by the negative knowledge, beliefs, attitudes, and practices within the society.'
Key Findings
Results
Adolescents and young people with spina bifida and hydrocephalus reported experiencing sexual violence and abuse as a significant sexual and reproductive health challenge.
Data collected through 60 semi-structured interviews between March 2021 and February 2022
30 interviews were conducted with adolescents and young people with spina bifida and hydrocephalus, and 30 with their caregivers
Sexual violence and abuse was identified as a recurring theme through thematic analysis
The study was community-based and exploratory in nature, conducted in Uganda
Results
Incontinence and associated stigma were identified as major sexual and reproductive health challenges for this population.
Incontinence is a common physical symptom of spina bifida and was reported as a source of social stigma
Stigma related to incontinence emerged as a distinct theme across participant interviews
Both adolescents with the condition and their caregivers contributed to this finding
The stigma was linked to broader negative societal knowledge, beliefs, and attitudes toward disability
Results
Some adolescents with spina bifida and hydrocephalus reported being coerced into taking birth control methods without their informed consent.
Coercion into contraception was identified as a distinct theme through thematic analysis
This finding reflects a violation of reproductive autonomy among this population
The issue was reported within the context of broader disempowerment of individuals with disabilities
Both adolescent and caregiver interviews contributed to identifying this theme
Results
Participants reported an inability to feel sexually empowered, representing a psychological and social dimension of their sexual and reproductive health challenges.
Inability to feel sexually empowered was identified as a recurring theme across interviews
This finding was situated within a context of negative socio-cultural beliefs about disability and sexuality
The study included adolescents and young people aged within the 10–24 age range consistent with global definitions
Thematic analysis was used to identify common patterns across all 60 interviews
Results
Negative socio-cultural beliefs and lack of accessible sexual and reproductive health information were identified as compounding challenges for this population.
Negative socio-cultural beliefs emerged as a standalone theme in the thematic analysis
Lack of and inaccessible sexual reproductive health information was reported by participants
These factors were described as 'overshadowing' the sexual and reproductive health needs of adolescents with spina bifida
The denial of sexual and reproductive health rights was framed as a consequence of these societal attitudes
Results
Poor menstrual health management was identified as a specific sexual and reproductive health challenge for adolescents with spina bifida and hydrocephalus.
Menstrual health management difficulties were identified as a distinct theme through thematic analysis
This challenge is likely compounded by mobility limitations and incontinence associated with spina bifida
Both adolescent participants and caregivers contributed perspectives on this issue
The finding highlights a practical, physical dimension of reproductive health specific to this disability group
Conclusions
The study found that sexual and reproductive health challenges among adolescents with spina bifida and hydrocephalus in Uganda are not receiving adequate attention from society or health systems.
Globally, 180 million young people aged 10–24 live with a physical or mental health disability
The paper states that the rights to sexual and reproductive health of this group 'have been denied often overshadowed by the societal negative knowledge, beliefs, and attitudes'
The authors conclude there is 'need to develop and implement programs and awareness campaigns aimed for the empowerment of individuals with SB to seek knowledge and skill building regarding sexual and reproductive health'
The study was exploratory, using a community-based cross-sectional qualitative design in Uganda
What This Means
This research suggests that young people in Uganda who have spina bifida (a condition affecting the spine) or hydrocephalus (excess fluid in the brain) face serious but largely ignored challenges around their sexual and reproductive health. Through interviews with 30 young people who have these conditions and 30 of their caregivers, researchers found that participants experienced sexual violence and abuse, social stigma related to bladder and bowel incontinence, difficulty managing menstruation, and a general sense of not feeling empowered about their own sexuality. Some were even pressured into taking birth control without being properly informed or consenting. A lack of accessible, appropriate health information and deeply held negative cultural beliefs about disability and sexuality made these challenges worse.
This research suggests that society—including families, communities, and health systems—tends to overlook the sexual and reproductive health needs of young people with these disabilities, sometimes under the assumption that they are not sexually active or do not have the same needs as non-disabled peers. This leaves them vulnerable to abuse and poor health outcomes, and without the knowledge or skills to make informed decisions about their own bodies and relationships.
The findings point to the need for awareness campaigns and educational programs specifically designed to support young people with spina bifida and hydrocephalus in understanding their sexual and reproductive health rights. Addressing stigma and ensuring that health information is physically and socially accessible to people with disabilities are highlighted as important priorities. The study adds to evidence that disability does not eliminate the need for—or the right to—comprehensive sexual and reproductive health support.
Ndekezi D, Ssemata A, Ganshanga A, Nalugya R. (2025). Sexual and reproductive health challenges among adolescents and young people with spina bifida and hydrocephalus disability in Uganda: A qualitative study.. PloS one. https://doi.org/10.1371/journal.pone.0308194