Study design

This formative qualitative study was undertaken to improve understanding of how to support the co-creation of Participatory Learning and Action for Disability (PLA-D) groups in a rural Ugandan community [28]. We focused on exploring how community groups can be used to generate solutions to overcome barriers to healthcare access and improve healthcare access for persons with disabilities. Luuka district, in Eastern Uganda was chosen purposively as the study area because it has large rural population and is one of the areas in the country with a large number of persons with disabilities [29]. Persons with disabilities in the area also grapple with a number of health challenges and are often excluded from appropriate access to health care services [29].

Participants and setting

We conducted face-to-face in-depth interviews among persons living with disabilities between 5^th September and 26^th November 2022. Purposive sampling approach was used to enable researchers to identify participants who could share information-rich narratives of their perspectives towards group formation and participation from the community in Luuka district. Participants included persons with different impairment types including hearing, visual, cognitive, physical, albinism and multiple impairments.

Inclusion of a wide range of different impairment types enabled a comprehensive exploration of participants’ diverse opinions and perspectives. Participants shared reflections about their impairments and suggested forming groups to improve healthcare access tailored to their specific needs. We identified participants from the seven sub-counties and one town council that make up Luuka district.

Data collection

Data were collected by Ugandan researchers (ASS and SS) who are experienced in qualitative methodology, health and disability research and speak the language spoken in the study area. ASS and SS developed open-ended semi-structured topic guides (S1 Text) based on our key research questions that were used during the interviews. We piloted the guide using the first two interviews to validate it thereby adjusting and rewording some questions based on emerging themes in liaison with the research team. Thereafter, two researchers (ASS and SS) translated the interview guide from English to Lusoga and the research team assessed the guide’s appropriateness and scope allowing for data to be coded thematically.

The first section of the topic guide invited respondents to share their experiences in seeking health care, while the second section explored concepts related to group formation. This provided an opportunity for the exploration of issues related to group dynamics. For example, participants discussed if they were in existing groups and how these groups operated. Interviews for persons with hearing impairment were made accessible and inclusive through the use of a sign language interpreter, who was a member of the research team. For participants with intellectual/ cognitive impairment, we employed strategies such as breaking down complex questions into simpler parts and providing prompts to ensure understanding. Prior to data collection, we tailored our interview guides to be simple, clear, and accessible for all participants, including those with cognitive impairments. Additionally, a caregiver/ family members whom the participant felt comfortable with was present to provide support and clarification, though every effort was made to ensure that the participant’s voice remained central to the conversation. The interviews were conducted in-person at the participants homes, lasted between 40-70 minutes and were recorded, with consent.

Data management and analysis

The recordings were transcribed verbatim, and the interviews conducted in the local dialect we translated to English language. The transcripts were immediately cross checked against the recordings by one of the co-authors (AM) for completeness, correction of minor transcription errors and to ensure meaning was preserved. All names and any personal identifying information were removed from the transcripts. Two authors (ASS and SS) independently reviewed the transcripts to identify and highlight any emerging themes related to group formation. A thematic qualitative analysis was conducted to using an inductive approach to explore key perspectives linked to group formation. The analysis followed Braun and Clarke [30] six-phase framework: (1) familiarization with the data, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes, and (6) producing the final report. Thematic saturation was determined when additional interviews no longer produced new information or themes relevant to the research questions. Saturation was continuously monitored throughout data collection, and once no new insights emerged, recruitment was concluded. In total, 27 in-depth interviews were conducted, ensuring diversity in impairment categories and gender distribution to capture a broad range of perspectives. Regular meetings were held to discuss any emerging and divergent themes, and a consensus-driven codebook was developed to support the systematic coding of all transcripts. To ensure rigor, two researchers independently coded a subset of transcripts and later compared their coding to refine definitions and resolve discrepancies. This process enhanced inter-coder reliability and consistency in theme identification. During textual coding, the researchers (ASS and SS) engaged in iterative reading and re-reading of transcripts to identify participants narratives linked to the identified emerging themes. The main themes and sub-themes were refined through continuous comparison across transcripts to ensure coherence and relevance. Data coding was conducted manually using Microsoft Excel. Manual coding was chosen for this study to allow for a more nuanced, in-depth engagement with the data allowing for greater flexibility in capturing emerging themes, particularly given the complexity and diversity of experiences reported by participants across different disability groups. This approach enabled the research team to thoroughly familiarize themselves with the content, context, and subtle meanings in the participants’ responses. Although member checking was not conducted for this study, preliminary results were reviewed and discussed by the research team to address any challenges encountered, refine interpretations, and ensure that the findings accurately represented participants’ perspectives to enhance credibility of the findings. Additionally, investigator triangulation was employed, with three co-authors (AM, SH, FBM,) reviewing the themes to reduce bias and enhance analytical depth. Reflexive discussions were also held to acknowledge and mitigate potential researcher biases.

To enhance transparency, Illustrative participant quotes were included in the results section to exemplify, support, and provide depth to the identified themes. Each quote was clearly attributed to its respective participant category to ensure representation of different viewpoints (e.g., impairment type and gender). To enhance clarity and readability, minor grammatical edits, such as adjusting tense or correcting syntax, were made to some quotes without altering their original meaning or tone. These changes were applied to ensure the authenticity of participants’ voices while making the findings accessible and understandable to a broader audience.

Ethics statement

The study received institutional and national ethics approvals from Uganda Virus Research Institute (UVRI REC Ref: GC/127/904) and the London School of Hygiene and Tropical Medicine (LSHTM Ref: 26715) and research clearance from the Uganda National Council for Science and Technology (UNCST Ref: SS1348ES) and the Luuka district local government - district health office. All potential participants were provided with written information about the purpose of the study and their rights while participating in the study clearly explained during the consent process. We used simplified information and consent forms for participants with communication challenges and proxy representatives for individuals with cognitive impairment supported the consent process. All participants were above 18 years and provided written informed consent before engagement in any study related activities.

Demographic characteristics of participants

We interviewed 27 persons living with disabilities (15 females and 12 males). Each excerpt in this section is labelled with the relevant participant’s impairment category to maintain transparency and ensure that the diversity of perspectives is clear.

Participant demographics are shown in Table 1.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Participant demographics of interviewed person with disabilities (N=27).

https://doi.org/10.1371/journal.pgph.0003140.t001

Platform for problem and solution identification

Most interviewees reported that their main motivator to join a group was the desire to have a uniting platform for joint identification of challenges affecting persons with disabilities. Participants indicated that having an opportunity to share experiences among group members was an easy channel to identify challenges affecting persons with disabilities as well as share success stories to some of their challenges.

“When there are groups where we can meet together, it is easy to discuss the challenges that we face. It is easy for us to get to know how to handle and solve the problems our own way, and it gives us a way forward on how to handle these challenges.” Female, 40 years, physical disability.

The collective identification of problems was indicated as an easy opportunity to find solutions and manage challenges. Participants explained that solving problems together reduces the individual burden of handling challenges independently, especially considering already marginalised situations.

“We have similar problems so rather than pondering over something individually which may be hard for you, someone from the group could share their opinion about the same thing that proved difficult for you and when you take on their advice, your problem is resolved. There is power in being in a group than if you are alone.” Male, 34 years, physical disability.

Opportunity for sharing experiences

Persons with disabilities who were interviewed reported that they expected to share their experiences in these groups, which would encourage them to join. Being a member of a group was viewed as an opportunity to freely share their experiences in a safe environment.

“I am a person with a disability, I think it is good to share experiences in groups in an inclusive way accommodating all our needs. That will be a valuable experience for me.” Female, 26 years, hearing impairment.

Participants also viewed the groups as providing possibilities to learn and get support from their peers.

“I would love to be part of that group because I will get support and when we are together in a group, there’s a lot you can learn from each other.” Female, 23 years, Cognitive impairment.

Speaking with one voice to demand for services

To some participants, being a member of a community group is an opportunity to have a strong voice to advocate and access healthcare services. Participants indicated that they would join a group so that they can engage communities to address the systemic barriers to healthcare access.

“I am interested in belonging to a group because when you are in a group and you concentrate on things concerning health, it is possible to have one voice and with that one voice, you can able to get the healthcare worker or two to visit the group, provide care to the group members, talk to them about their health and for me that is important.” Female, 29 years, multiple disability.

Participants noted that community groups are platforms to advocate for their rights and policy changes, raise awareness about the importance of inclusive healthcare services.

Using groups to bring healthcare services closer

The desire was expressed to have easier and more convenient access to healthcare services through the groups. Participants indicated that establishment and utilisation of the groups would support bringing services nearer to persons with disabilities, which will encourage them to join the groups. The groups are additionally anticipated to lessen some of the challenges associated with long distances to the health facilities.

“I would be interested to join the group if they are working towards bringing health services that we are not able to get from extremely far health facilities closer to us. If they say that today, a healthcare worker will be coming to sensitize us and offer some services during these group meetings, it will interest me so much to come and join these meetings.” Female, 40 years, physical disability.

Additionally, participants believed that establishing partnerships by having healthcare workers participate in group meetings, offering services and education, would encourage collaboration on initiatives aimed at making healthcare access easier and more convenient, thereby increasing their interest in joining these group.

Empowerment and support

The expectation of economic empowerment, support and development within the formed groups was considered as a facilitator to group formation for the majority of the participants interviewed. The groups are expected to provide encouragement, emotional support, practical advice, economic sensitization and, empowering individuals to navigate the healthcare system.

“I will join because I know it is going to promote the development for persons with disabilities in the village. We can use the groups to share experiences, resources, and information related to healthcare. We can get people to sensitize us about work, livelihood and how we can be self-sustainable.” Male, 50 years, Visual impairment.

Entrenched social exclusion and lack of sensitization

Entrenched social exclusion among persons with disabilities was described as a major barrier for them to take individual actions something that would affect group formation. The low self-esteem together with the lack of community awareness about groups was described as a barrier to group formation.

“At times, people might not be aware of what is happening within the community, not aware about the group while others might not know what to do.” Female 45 years, Visual impairment.

Participants expressed little confidence on how to participate in the groups, with fear of discrimination or exclusion which would impact their confidence and willingness to engage in group activities.

“People with disabilities mostly, have low self-esteem which is the major issue and may even fear to join in the groups developed for them. They need to be sensitized as these groups are meant to help them too.” Male, 50 years, Visual impairment.

A fee requirement for group membership

Economic barriers linked to their limited financial resources was noted as a hinderance to group formation and participation. The group membership fees and the routine saving requirements in the existing groups in the communities were indicated as some of the reasons why the majority of persons with disabilities don’t belong to any of the community groups.

“What would stop me from joining the group is they start by asking for membership fees and for regular savings. I would love to join a group, but I have no ability to pay the mandatory member fees and save in every meeting.” Female, 40 years, physical disability.

Some participants noted that failure of group members to make monetary contributions was described as a lack of teamwork demotivating other people to belong to such groups.

Absence of reasonable accommodation

Lack of reasonable accommodation, absence of assistive devices for persons with disabilities to facilitate them to attend group meetings was a reported barrier.

“Am not encouraged to join a group where there is no reasonable accommodation or resources to support each other. You have someone with a hearing impairment, and we cannot communicate with them or someone in a wheelchair and they cannot reach the meeting venue.” Male, 34 years, physical disability.

The inadequate provision of reasonable accommodations for the group activities in the community can hinder full participation and inclusion of persons with disabilities hampering their desire to join and participate in the community groups.

Group awareness and sensitization of persons with disabilities

Persons with disabilities recommended community sensitization about the groups such that people can become aware of the groups, understand their objectives which interest them to join. This would potentially counter the barriers associated with low self-esteem and lack of information.

“I think the first step would be to bring people together and sensitize them about the need for the group, how they work, why they should join such that they can appreciate the idea and the benefits of such a group” Male, 40 years, physical impairment.

Stakeholders’ engagement and group formalisation

Community participation and incorporating stakeholders were suggested as a simple technique to map and locate persons with disabilities. Additionally, participants noted that supporting group registration and formalization within the existing government structures and regulations would strengthen and affirm the members and the group. Group sustainability and ownership was also tied to stakeholder engagement.

“I think the idea of community groups is ok, we just need to work with our disability organisations, to own the groups, have them registered so they can also benefit from government programmes.” (Female, 26, student, hearing impairment)

Participants expressed a desire to play a leading role in the group formation, taking ownership of the group’s process and dynamics. This would create an environment that encourages participants to view themselves as key stakeholders and bonafide group members.

Established organizational structure and managing group dynamics

Central to the group dynamics were ideas related group size, leadership, inclusiveness, and nature of meetings. Participants noted that the groups should be accommodative with a manageable size not to lose the sense of belonging. Groups need to be inclusive of all disabilities and the group leadership needs to be representative of various disabilities. This will avoid dominance of a particular disability, provide opportunity for sharing lived experiences across disabilities and close supervision for easy decision making.

“We should have a group that is not being too big where we can manage each other, and we are from the same community. These groups need to be for and managed by persons with disabilities because we better understand each other.” Female 25 years, Albinism.

If there are to be any monetary contributions, it was advised to set them at levels that those with disabilities could afford.

“If you are asking for membership fees or for savings, put them at a reasonable fee not to discourage members because even the shared resources could bring us together. Let us start small by saving UGX 1000 (approx.$0.3), that may be easy for members to save.” Male, 23, person with a disability.

Establish holistic groups

Participants recommended that the groups need to be holistic in nature to cater for a broad range of needs for persons with disabilities rather than problem or need specific. Their expectation is for the groups to be integrative and comprehensive to tackle several needs such as economic empowerment, health, service delivery.

“The groups should be set up to support our health and income in our homes. Of course, if you’re not healthy you can’t earn.” Female, 45 years, Physical impairment.

The groups were likened to a bridge to services and support for the members. Participants noted that groups will be a good platform through which health care workers could be invited to share information on health promotion and prevention thereby bring healthcare closer to the communities.

“The group should be supporting us, giving us help, supporting their members access services from the government. It is particularly good for the group to be able to provide for that makes us very happy” Male, 23, farmer, Multiple impairment.

Strengths and limitations

Our study has strengths and limitations to consider. The study used purposive sampling to include a diverse range of participants with different impairment types, allowing for a comprehensive exploration of perspectives and recommendations related to group formation and healthcare access. Additionally, the use of in-depth interviews conducted by experienced researchers allowed for the collection of rich and detailed narratives, providing a deeper understanding of the lived experiences of persons with disabilities in the community. However, there are some limitations to consider. As a qualitative study, the sample size may be small, which could limit the generalisability of the findings to other contexts. However, the ability to collect perspectives from participants with various impairments in the community provided in-depth perspectives on group formation. Furthermore, while purposive sampling allowed for a comprehensive exploration, it might introduce some selection bias, as participants were chosen based on specific criteria.

Implications for research and service provision

Our ambition is to set up community groups of persons with disabilities to identify barriers and generate low-resource community driven solutions to overcome the barriers in accessing healthcare [28]. Persons with disabilities reported a key motivation to join these groups as primarily being associated with the ability to address other needs beyond healthcare such as opportunities to save and borrow money during times of need, which included medical expenses or starting small businesses. Additionally, participants viewed these groups as a mean to identify shared challenges, advocate for healthcare access, provide a closer link to healthcare services, and foster the sharing of experiences among members.

We believe that the concept of community based participatory learning action groups can be applied to inform the design of interventions to improve access to health services for persons with disabilities [28]. Further research is needed to evaluate sustainability of these groups in the community and using these groups to address other unmet needs for persons with disabilities, i.e., education, livelihood, and water sanitation and hygiene initiatives. We recommend the participatory approach to ensure the perspectives of persons with disabilities shape implementation efforts. By gaining insights from the perspectives of persons with disabilities themselves, we can strengthen the development of effective community-based healthcare interventions. The evolution of community group modalities for persons with disabilities must be continuously explored and refined to optimize their potential in enhancing access to health care services. As we raise awareness of the factors that influence successful group formation and participation, we take a significant step towards fostering resilient, self-determined communities capable of overcoming access barriers and promoting equitable health outcomes.