Health-seeking behaviours and pathways among people with disabilities in Eastern Uganda: A qualitative analysis

Patient and public involvement

The research participants, people with disabilities and key stakeholders at the district and national levels were engaged during the design and implementation of the study from its initial stages to dissemination. Initial engagements were held with the Luuka local government and representatives from the disability community to discuss the research design, understand their experiences, priorities, and specific healthcare needs. These discussions guided the conceptualisation and design of this research, ensuring that the research questions addressed contextual issues within the district. During data collection, we worked with district stakeholders, community networks, and Organisations of Persons with Disabilities at both the district and national levels to recruit participants and ensure safeguarding. This helped us identify and locate potential participants with disabilities, ensuring the study was representative of the district’s common disability types. This formative study aimed to provide evidence that would inform the design of a community-based participatory group intervention to address healthcare access needs for people with disabilities in Luuka district, Uganda.^18,19 People with disabilities were invited to participate in three intervention design workshops. These workshops focused on designing the content, structure and implementation for the intervention, ensuring that it was contextually appropriate and effectively addressed the specific healthcare access needs of people with disabilities.

Study design

We conducted qualitative in-depth interviews with people with disabilities (n = 27) between September and November 2022. This study was part of the formative research conducted under the Missing Billion project in Uganda, which focuses on designing and testing community-based, participatory approaches to make healthcare more inclusive and accessible. Specifically, this formative work contributed evidence to inform the design, content, and implementation of disability-inclusive health interventions, including the structure and function of Participatory Disability Action Groups.¹⁸

Participants and setting

This study was conducted in the Luuka district, Eastern Uganda. Luuka district comprises of 8 sub-counties and 4 town councils with an estimated population of 203,500 people. Participants with disabilities were purposively selected for in-depth interviews across nine Sub-Counties in the district. We made efforts to ensure representation of the key impairment categories identified in the district: physical, hearing, visual, cognitive, and multiple impairments. To recruit participants, we used a) contact lists from the district’s disability focal person; (b) from local disability associations/leaders; and (c) from recommendations of participants who participated in the study (snowballing). A total of 27 participants (cognitive impairment n = 5, hearing impairment = 6, multiple impairment = 5, person with albinism = 1, physical impairment = 5, visual impairment = 5), were approached and participated in the study, with only one person declining to participate.

Data collection

In-depth face-to-face interviews with people with disabilities were conducted by experienced social scientists, in the participants’ preferred language (Lusoga or Luganda). A semi-structured interview guide was developed and pilot-tested to ensure appropriateness, clarity, and relevance to the research questions (Extended Data). The interviews lasted between 50–80 minutes and were recorded, and researchers made written notes. Interviews with participants with hearing impairment were conducted by a researcher with a hearing impairment, and the interpretation of the interviews was voiced by a sign language interpreter. Interviews with participants with cognitive and intellectual disabilities, as well as with children with disabilities, were conducted through their caregivers, who acted as proxies. Interviews were held privately at participants’ homes, health facilities, or community centres and explored healthcare-seeking patterns, including care triggers and support systems.

Data management and analysis

All interviews were transcribed and translated into English and anonymised using unique participant identifiers to ensure confidentiality. We employed an inductive thematic analysis to systematically identify, organise, and interpret patterns across the data. The analysis followed Braun and Clarke’s six-step framework,^20–22 which emphasises researcher subjectivity as a resource and supports an iterative, flexible, and reflective analytic process.²² Three authors (ASS, AM, and SS), all experienced in qualitative disability research, independently reviewed the transcripts to ensure accuracy, completeness, and deep familiarity. Line-by-line coding was conducted manually using Microsoft Excel to remain close to the data and allow for analytic immersion. Initial codes were generated inductively, capturing participants’ accounts of their healthcare-seeking behaviours and pathways. After generating initial codes, the research team met regularly to compare coding, discuss analytic insights, and iteratively refine the coding framework. Codes were grouped into broader categories, which were then developed into proposed themes. Using Braun and Clarke’s reflexive approach, we engaged in repeated cycles of reviewing, collapsing, and reorganising these themes to ensure they were coherent, analytically meaningful, and grounded in the dataset.

A shared codebook was created in Microsoft Excel, documenting code definitions (Extended Data). All transcripts were then coded using the final codebook to ensure consistency while allowing space to capture new insights that emerged during deeper analysis. Final themes were defined and named to reflect the underlying patterns relating to health-seeking behaviours and pathways among people with disabilities. Themes were interpreted in relation to the study objectives, the socio-cultural context of disability in Uganda, and existing literature on disability-inclusive health systems. Illustrative participant excerpts are presented in the results section to demonstrate how analytic claims were grounded in the data.

Ethics and informed consent details

This study was conducted in accordance with the Declaration of Helsinki. It was approved by the Uganda Virus Research Institute’s ethics committee (Ref: GC/127/904) and the London School of Hygiene & Tropical Medicine ethics committee (Ref: 26715). Research clearance was granted by the Ugandan National Council of Science and Technology (Ref: SS1348ES) and the Luuka district local government - district health office. Written informed consent in Lusoga, the local language, was obtained before enrolment (Extended Data). If the participant was unable to read, the information was read to them by a member of the research team in the presence of an impartial witness.

No treatment at all

For many participants, seeking healthcare was described as a multifaced process, influenced by previous experiences, daily realities and available support. Rather than presenting a straightforward route, their journey toward care was shaped by evolving decisions, personal circumstances, and social dynamics. Participants described enduring illness for a lengthy period, often in silence, without treatment or visiting a healthcare facility.

This means that the path to healthcare access is not structured, but rather situational. Participants reported reliance on chance or support from family members and friends. In the absence of such support, many reported that they suffer in silence, their ailments untreated and their conditions potentially worsening over time.

This was worse among younger participants, whose access to care was dependent on caretakers for both decisions and movement. Consequently, seeking healthcare was not considered a need for the caretakers, as one of the participants reported:

Negative perceptions by caretakers also played a role in delaying treatment. Participants reported that some caretakers think that people with disabilities do not need medical care, hence do not take them to health facilities when they are unwell.

Self-treatment

Self-medication emerged as a coping strategy in the healthcare-seeking journey for many participants. Self-medication was described as a proactive measure in response to illness, especially in situations where formal care was inaccessible. Many relied on personal judgment, past experiences and advice from others to buy medication from nearby drug shops to manage common illnesses within their means.

For many participants, self-treatment was not just a choice, but a necessity. Participants reported that after recognising common symptoms of a certain illness, they acted based on the resources and options available to them, such as sending someone to buy medication.

Self-medication involved a form of intuitive diagnosis, where participants or their caregivers made decisions based on observable symptoms. For example, participants reported guessing the cause of their illness, or used signs like headaches, fever, and stomach pain to guide treatment and bought drugs, hoping for recovery.

For many, the affordability and convenience of drug shops made self-medication the most viable option for healthcare. People with disabilities reported buying cheap over-the-counter drugs, sometimes for as little as UGX 500, to manage illnesses.

Home treatment

In some cases, participants chose home-based care. This was often due to severe mobility limitations or previous experiences with the healthcare system, leading to a reliance on treatment administered outside of formal settings. Consequently, healthcare workers were invited to provide healthcare to participants in their homes, as reported by one of the participants:

Another participant recounted an instance when they had to invite a healthcare to their home to attend to their child with a disability:

Although home-based care drained the healthcare systems, participants viewed it as the only option due to the absence of structured or accessible pathways to formal healthcare.

Use of traditional medicine

Participants reported using traditional medicine as a practical and immediate response to illness. They reported using local herbs, which are more readily available, as an alternative to formal healthcare. For common illnesses, such as malaria, cough, or flu, local herbs provided an accessible and perceived effective remedy.

Another participant added:

For many people with disabilities, traditional medicine offers an accessible, trusted and immediate alternative to formal healthcare. Another participant shared how their familiarity with traditional medicine meant they could act on their own when they felt unwell:

Delayed treatment

For many participants, the decision to seek care was not always the first option when feeling unwell. Many reported delaying healthcare when they felt unwell, often due to a lack of support from others. This over-reliance on others meant that illness remained untreated for extended periods.

Other participants shared how their inability to move on their own meant that illnesses were tolerated, often staying for extended periods without seeking care, as reported by an 80-year-old woman with multiple impairments:

The delay in seeking care was common among participants with mobility, hearing, or visual impairments due to accessibility barriers and a lack of reasonable accommodations within healthcare facilities. Consequently, seeking healthcare was often only possible when support from others, such as family members, was available.

Even when logistical support was available, lack of money often meant that participants did not pursue treatment or discontinued care midway. This is because they could not pay for transport, medications, or services when required to.

Most participants relied on financial help from family members or relatives to get treatment, but this support was inconsistent and unreliable. This dependency also delayed decision-making to seek care and made them vulnerable to neglect.

Strengths and limitations

A key strength of this paper lies in its representativeness across different disability types, achieved through the study’s use of multiple recruitment approaches. The use of qualitative methods provided rich, context-based data on the complex pathways and healthcare-seeking journeys of people with disabilities, which are often overlooked. However, the focus on one rural district might also reduce the transferability and generalizability of findings to urban communities in Uganda and Sub-Saharan Africa. Despite these limitations, the findings offer critical evidence to inform policies and interventions that promote inclusive healthcare. Addressing these barriers could help create an equitable healthcare system for people with disabilities.