Community Organisations’ Role in Diabetes Self-Management in Ethiopia: A Phenomenological Study

Abstract

Aim:

To explore the role of community organisations in providing social support and facilitating self-management for individuals with type 2 diabetes in Ethiopia.

Methods:

A phenomenological study approach was employed, utilising in-depth interviews and focus group discussions with a purposive sample of 25 participants. This included members of neighbourhoods and leaders of local community organisations (known locally as Idir, Equb, Tsewa, or Mahiber), as well as members of the diabetes association. Reflexive thematic analysis was employed to analyse the data.

Findings:

A total of 25 individuals participated in the study, including (n = 8) members of community organisations, (n = 7) community organisation leaders, (n = 5) religious leaders, (n = 3) women’s association leaders, (n = 1) church-based fundraiser, and (n = 1) diabetes association representative. Three major themes were identified regarding the role of community organisations in providing social support and facilitating self-management: 1. Community cultural perceptions and diabetes awareness. 2. Community support and social networks in managing diabetes. 3. Collaboration and strategies to overcome systemic challenges in diabetes management within the community. A holistic and collaborative approach among community organisations helps support individuals with diabetes by providing essential resources. These include organising transportation to medical appointments, mobilising financial resources for treatments, and offering emotional and spiritual support, all of which enhance diabetes management. Despite these positive contributions, structural and cultural barriers persist. Religious views on diabetes influence support from faith-based institutions, with some leaders rejecting biomedicine in favour of faith-based healing.

Conclusion:

Community organisations play a crucial role in providing social support and facilitating self-management for individuals with diabetes in Ethiopia. They help overcome obstacles, mobilise resources, and fill gaps in formal healthcare by promoting healthier lifestyles. However, the effectiveness of community organisations is hampered by a lack of knowledge and awareness of effective diabetes management.

Introduction

Diabetes is a multifaceted and growing public health concern in Ethiopia, exacerbated by limited healthcare access and cultural influences on health management. ¹ The intricate nature of diabetes requires not only medical intervention but also ongoing community support to ensure effective and sustained self-management.^2,3 The lack of such support is associated with inadequate self-management practices and negative health and mental health outcomes. ⁴

Active community involvement in diabetes care holds the potential to improve access to care, promote positive self-management behaviours, and enhance health outcomes. ³ This can be achieved through the provision of education, coaching, social support, and empowerment. ⁵ Community engagement plays a vital role in identifying and mitigating barriers, such as financial constraints, cultural differences, and challenges posed by health literacy.^3,6

In this context, community organisations (civil societies) are defined as groups formed by individuals in the same geographic area to promote mutual support and social well-being. ⁷ These organisations are often formed from shared religious, cultural, or traditional values, referred to as ‘mahiberawi nuro’ (literally meaning ‘collective life’). ⁸ This collaborative approach includes neighbourhood associations, social clubs or social services, and faith-based groups, all aimed at building resilience and a sense of belonging among community members. ⁹

One notable example of community support in Ethiopia is the Edir, also known as Iddir. This traditional mutual aid society provides financial and social support during the time of bereavement and for other community needs. ¹⁰ Beyond grieving, members contribute to a communal fund that alleviates the economic burden while also offering emotional support, highlighting the culture of support in the community.^8,10 Another important social institution is the Equb (also spelled Iqub or Ekub), a cooperative social institution or traditional savings and credit system where members contribute equal amounts at regular intervals. The Equb enhances economic activities and provides financial support when needed. ¹⁰

Additionally, the Mahbär, or Tsiwwa (also spelled Tsewa), is a type of community-based association with Orthodox Christian roots that serves both spiritual and social functions. ¹¹ It includes rituals commemorating saints and offers community support through prayer, home/hospital visits, and emotional assistance, thereby enhancing communal care networks. ¹¹ These groups create cultural and spiritual frameworks that shape the availability of social support in areas with limited healthcare access. ¹²

An interventional study from California, USA, showed that engaging local resources, peer support, and culturally relevant education helped individuals gain the knowledge and skills needed for effective daily management and customised care to align with their values and lifestyles. ¹³ Support from community networks establishes a sense of shared responsibility for diabetes care by facilitating access to healthcare, providing peer support, promoting healthy lifestyles, and advocating for improved healthcare policies.^14,15 They also create a supportive environment that empowers individuals to manage their diabetes effectively by promoting ongoing and flexible diabetes self-management support over time to meet changing needs. ¹⁶

A recent mixed-methods study from India highlighted that community-based diabetes support programmes enhance self-management by allowing members to share experiences and provide practical and emotional support. ² This, in turn, promotes more accessible supports by facilitating smoother care transitions and promoting long-term behavioural changes in diabetes management.^17,18 Ultimately, this support empowers individuals with diabetes to take control of their health and improve their overall quality of life.^18,19

In Ethiopia, community resources play a vital role in delivering effective patient care, particularly in regions with limited resources where treatment is needed to extend care beyond the clinical settings. Despite their importance, however, current diabetes care guidelines tend to focus predominantly on clinical requirements, often neglecting the valuable contributions of community networks and resources that could significantly enhance patient care. This oversight not only limits the opportunities for community engagement but also underutilises the existing resources that could promote more holistic and sustainable diabetes management. ³

Furthermore, there is a significant gap in the research concerning the role of community organisations in diabetes care in Ethiopia. To date, no comprehensive studies have examined the contribution of these community-based entities to the social support network and their role in facilitating self-management strategies for individuals living with type 2 diabetes (T2D) in the country. Therefore, this study aims to explore how these community organisations provide social support and facilitate self-management for individuals with T2D in Ethiopia.

Methods

Study Setting

The study was conducted at Shenen Gibe General Hospital in southwest Ethiopia. The hospital provides both inpatient and outpatient services to approximately 1.4 million people in the service catchment. ²⁰ It provides monthly follow-up services to more than 1,300 individuals with diabetes.

Study Design

A descriptive phenomenological study was conducted using in-depth interviews and focus group discussions (FGDs) to explore the role of community organisations in diabetes management. ²¹ This approach enables researchers to gather comprehensive data and enhance understanding of the contribution of community organisations in delivering social support and facilitating self-management for individuals with T2D. ²² This research followed the Standards for Reporting Qualitative Research (SRQR) reporting guidelines. ²³

Participant Recruitment and Sampling Procedure

Purposive sampling ²⁴ was used to recruit participants for the study, including members of neighbourhoods and leaders of local community organisations (known locally as Idir, Equb, Tsewa, or Mahiber), as well as members of the diabetes association.

Individual Interviews

A proactive strategy was employed to ensure comprehensive community engagement and effective participant enrolment. Initially, we attempted to recruit 25 community members, but only 13 agreed when invited. The literature suggests that sample sizes in qualitative research can range from 5 to 30, which is sufficient for interviews to explore diverse opinions.^25,26 Community organisations, such as Tsewa, Mahiber, Equib, and Iddir, are known for hosting regular meetings, making them ideal for consistent recruitment efforts. Initial contact was made with the leaders of these community networks to introduce the study, explain its objectives, and discuss potential collaboration for participant recruitment. Community leaders were asked to disseminate information about the survey during their meetings and gatherings by utilising their existing networks and trust in the community. The first author attended these gatherings, with permission from the leaders, and shared information about the study directly with members, answered any questions and provided details of the interview process. Once the participants showed interest in participation, the first author provided them with a translated Amharic version of the plain language statement and a consent form. Once they agreed to participate, their contact information was collected, and they were contacted to schedule the interviews.

Focus Groups

Twelve individuals, including community leaders, members of Tsewa, Mahiber, Equib, and Iddir, and religious leaders, were invited to participate in FGDs and were assigned to 1 of 2 groups. It is recommended that focus groups have an average of 6 to 12 individuals. ²⁷ The participants were given an Amharic version of the plain language statement and consent form to read. They signed the consent form on the day before individual interviews and group discussions began.

All participants were over 18 years old, capable of providing informed consent, had been community residents for the last 6 months, and were actively involved in community organisations as members or leaders. This comprehensive approach ensures a diverse sample of individuals intimately connected with the community, facilitating a nuanced understanding of their perspectives and experiences. Individuals with significant cognitive impairments that could potentially interfere with their ability to provide social support and self-management were excluded from the study.

The number of participants was determined by the information power to achieve an optimal sample size. ²⁸ Information power refers to the suitability of a sample or participants based on their richness, specificity, quality of dialogue, and relevance to the research question. High information power is attained when the sample provides in-depth insights and diverse experiences, thus requiring fewer participants. ²⁸ This suggests that fewer participants are necessary when they offer rich insights and diverse experiences relevant to the research questions.

Data Collection

The study employed a combined data collection strategy of in-depth interviews to explore the role of community organisations in providing social support and facilitating self-management for individuals with T2D, followed by focus group discussions (FGDs) to explore shared beliefs and social dynamics. This approach aimed to build a comprehensive understanding by first examining individual perspectives and then expanding to group interactions, providing a richer exploration of social support dynamics in the context of T2D self-management.

The first author collected data through semi-structured interviews and focus group discussion guides. The guides were developed based on the gaps identified in the literature.^29-32 The guide was initially developed in English and later translated into the local language (Amharic) by the first author. Two experienced bilingual research assistants verified the accuracy of the translations. Data collection was conducted in Amharic to reduce language barriers and enhance mutual understanding. Probing techniques were employed to gain more insights into participants’ experiences.

The interviews and group discussions were conducted in private settings within the hospital. To make participants feel comfortable and relaxed while discussing their experiences, traditional coffee ceremonies were incorporated along with the aroma of incense, roasted barley, and bottled water.

A pilot test of the individual interview was conducted at Jimma Medical Centre with two individuals (1 religious leader and one community organisation member) to ensure relevance, context specificity, cultural appropriateness, and translation accuracy.

Data collection, processing, and analysis were conducted between January 2025 and August 2025. The interviews and group discussions were audio recorded, and field notes were made to capture verbal and nonverbal expressions, which are the main data collection aids in phenomenology. ³³ The participants were actively encouraged to articulate their views on each key point before proceeding to the next topic, resulting in a dynamic and inclusive exchange of opinions. Following each data collection, the first author reviewed the content and integrated any emerging ideas into the subsequent data collection.

Data Analysis

Reflexive thematic analysis (RTA) was utilised to analyse the data. RTA is a qualitative research approach that focuses on analysing and interpreting data logically and systematically. ³⁴

The first author listened to the audio recordings and read the field notes. Every interview and focus group discussion was transcribed verbatim in Amharic and translated into English by the first author. Two bilingual researchers, recruited for this purpose, verified the accuracy and consistency of the translation. The translated English transcript was then imported into NVivo software, version 20, ³⁵ to facilitate data analysis.

The translations were thoroughly reviewed, read, and reread multiple times by the first author to familiarise themself with the data, making observational and causal notes along the way and checking against the audio recordings for clarity. Inductive coding was used; in other words, the codes were derived from the data rather than predetermined, enabling themes to be constructed directly from the data. ³⁶ Original transcripts were regularly consulted to assess initial codes and interpret new ones as the author became more familiar with the data. Similar codes were merged and synthesised into initial themes, which were then refined into themes relevant to the research inquiries. Once potential themes had been identified, they were reviewed and refined. Thematic summaries for each theme were made, and key findings and representative quotes were used to illustrate the themes. The other authors reviewed the codes, sub-themes, and themes multiple times and provided feedback.

Trustworthiness of the Study

The authors implemented several strategies to ensure the study’s trustworthiness, as outlined in the qualitative research. ³⁷ The first author, being familiar with the local culture and language, facilitated accurate participant engagement and interpretation of the findings. Debriefing sessions were conducted with the research team to discuss participant recruitment, data collection, and analysis. Diverse community members were involved in the research process to enhance the cultural relevance and transferability of the results. A pilot test was conducted to ensure the interview guides were appropriate and accurately translated.

A regular discussion was held with the supervisory team to ensure that data interpretation and analysis remain free of personal bias. To further enhance confirmability, pertinent participant quotes were integrated, contributing to the transparency of the study findings. To increase the study’s credibility, a validation process was conducted with the study participants to confirm that the results reflected their perspectives. Finally, the research team collaboratively reviewed the findings and agreed on the themes.

To safeguard the privacy and confidentiality of the study participants, the interviews and focus group discussions were held in private spaces, and individual identifiers were removed and anonymised using unique codes.

Positionality Statement

In undertaking this study, the first author was both an ‘insider’, having been born in the area and possessing a deep understanding of its culture, beliefs, norms, and language, while also being an ‘outsider’ as someone who doesn’t have diabetes. This insider knowledge and outsider perspective enabled a richer analysis of the participants’ viewpoints and varied opinions, thereby enhancing the depth and authenticity of the research findings. ³⁸ The other authors are experienced qualitative researchers who approached the interpretation of the findings with careful consideration and judgment.

Findings

Study Participants Characteristics

Twenty-five participants took part in the study, which explored the role of community organisations in providing social support and facilitating self-management. Participants' ages ranged from 28 to 65 years. Among the participants, 14 were female and 11 were male. Thirteen individual interviews were conducted with members of community organisations, religious leaders, and community organisation leaders, lasting between 40 and 89 min. Additionally, 2 focus group discussions were held with 6 individuals per group, lasting 101-115 minutes. The study included 8 members of community organisations, 7 community organisation leaders, 5 religious leaders, 3 women’s association leaders, 1 church-based fundraiser, and 1 representative from a diabetes association (Table 1).

Table 1.

Socio-demographic Characteristics of the Study Participants (n = 25).

Variables
Age	Minimum age	28 years
	Maximum age	65 years
Sex	Male	11
	Female	14
Education	Diploma and degree	10
	Fifth to twelfth grade	9
	Less than fourth grade	6
Marital status	Married	20
	Divorced	2
	Widowed	2
	Single	1
Occupation	Employed/Self-employed	11
	Housewife	5
	Retired	5
	Self-Employed	2
	Unemployed	2
Role in the community	Community organisations’ leaders	7
	Community organisation member	8
	Religious leader	5
	Women’s association leader	3
	Church leader fundraiser	1
	Diabetes association	1

Theme Construction

The analysis identified 3 themes and 5 subthemes, developed from participants’ narratives using inductive, reflective thematic analysis. ³⁴ The findings are based on a combination of individual interviews and focused group discussions with various community members (Figure 1).

Figure 1.

Themes and subthemes of the role of community organisations in providing social support and facilitating self-management in Ethiopia.

The analysis revealed 3 main themes, and 5 sub-themes were constructed from the data. The first theme focused on community cultural perceptions and diabetes awareness. It included the sub-theme of misconceptions and cultural barriers to managing diabetes within the community.

The second theme addressed community support and social networks in managing diabetes, divided into 2 sub-themes: community empowerment and practical support for diabetes management, as well as faith-driven community support.

The third theme explored collaboration and the ways to overcome systemic challenges in diabetes management within the community. This theme encompassed 2 sub-themes: addressing systemic challenges and bridging the gaps between healthcare and the community in diabetes management, as well as identifying enablers for community-led education and awareness regarding diabetes management.

Community Cultural Perceptions and Diabetes Awareness

This theme focused on the community’s perceptions about diabetes and its management. In this theme, 1 main subtheme is explored: 1. Misconceptions and cultural barriers in managing diabetes in the community.

Misconceptions and Cultural Barriers in Managing Diabetes in the Community

The participants stated that the community mainly perceives diabetes as an unfortunate accident and a foreign disease, without really understanding its causes, leading to stigma and misconceptions. The participants also mentioned that the barriers include not only a lack of awareness and understanding about diabetes but also a societal reluctance to engage with the topic.

Diabetes used to be something we heard about primarily from abroad, especially in Arab countries. In my community, it wasn’t well known, but its prevalence is now increasing. The word “diabetes” is scary to me. (P1).

Stigma and misconceptions surrounding diabetes persist as major obstacles to effective management and support provisions within communities. Many individuals still associate diabetes with a lack of willpower or poor lifestyle choices, leading to discrimination and reluctance to seek medical support. This misunderstanding not only affects early diagnosis but also results in insufficient support for those living with diabetes.

Diabetes is often stigmatised in society, sometimes seen as a ‘disease of the devil,’ especially by those lacking knowledge about it. (P11).

Participants noted that a lack of uniform awareness and understanding about diabetes in the community hinders support for those people impacted by diabetes. Some individuals view diabetes as a curse, fearing they cannot offer adequate support due to misunderstandings surrounding the condition. These negative perceptions often lead people to avoid seeking medical help because of fear of contracting the disease and the absence of supportive environments.

Fear hinders our willingness to help others. Concerns about contracting or spreading diseases, as well as fears of negative consequences or curses, such as accidentally bringing the curse into my house without wanting it, often prevent people from offering support. (P10).

Misinformation about diabetes remains prevalent, leading many individuals and families to hide their condition due to fear of judgment and stigma. The participants noted that a culture of shame surrounding help-seeking discourages them from accessing support, resulting in isolation. The participants revealed that many feel embarrassed or fearful, leading to isolation and difficulty in discussing their struggles unless they encounter someone with similar issues.

Many people are afraid to discuss their problems openly. This lack of openness creates anxiety and fear. If someone hides their issues, they won’t receive the support they need, just like hiding a disease prevents a cure. (P6).

I find it difficult that many people choose to hide their diabetes; society cannot support them. It reminds me of the past when people were reluctant to discuss HIV. (P9).

The participants also highlighted that community perceptions of diabetes as a wealthy disease hinder support for individuals with the condition, as it leads to the belief that those with diabetes can manage it independently.

. . . In our community, diabetes is often seen as a disease of the wealthy or privileged, and I believe not many people can provide such support. (P6).

There is a common belief that diabetes primarily affects the wealthy. Some individuals think it doesn’t concern them because they don't consume excessive amounts of sugary or fatty foods. (P8).

The participants noted that many in their community lack comprehensive awareness about diabetes. The participants also mentioned that individuals with diabetes often follow local advice and try various remedies before they seek help from health facilities. The participants emphasised the need for open dialogue, noting that raising awareness of diabetes is essential to promoting empathy and support within communities.

The community lacks awareness about diabetes. When individuals are suddenly diagnosed with the condition, they often do not have the habit of starting treatment promptly. (P12).

Many people lack a basic understanding of what health truly means. Unfortunately, this lack of knowledge has led to preventable deaths. (P1).

Community Support and Social Networks in Managing Diabetes

This theme explored 2 major subthemes: 1. Community empowerment and practical support in diabetes management in the community, and 2. Faith-driven community support in diabetes management.

Community Empowerment and Practical Support for Diabetes Management in the Community

Participants reported that when community members face health challenges, community organisations play a pivotal role in supporting individuals with illnesses, including diabetes. The participants emphasised that organisations’ collaborative efforts in helping those who are unwell. The participants also mentioned that their support involved arranging transport to medical appointments, providing financial assistance for treatments, and offering emotional support, including visiting individuals during their hospital stay.

If a sick person needs financial assistance for treatment beyond their means, they can seek help from community organisations and members who unite to show their care and support. (P1).

In our neighbourhoods, we gather as a women’s Edir association to support sick members by collecting funds from the members and offering words of encouragement. This cultural practice promotes joy and a sense of community. (P11).

We continue to assist by covering transportation costs for hospital visits, ensuring attendance at appointments, providing money for medication, and fulfilling other essential needs. (P4).

The participants described community organisations such as Edir (a mutual aid Association) and Mahber and Tsewa (religious-based associations) that empower individuals with diabetes by providing essential resources to support adherence to their treatment plans. The participants highlighted that these organisations offer guidance, facilitating the self-management of diabetes through systematic education and regular health check-ups.

We provide advice and informational support to the patient, and if he/she is hospitalised, we visit them by going to the hospital and provide them with necessary support and assistance. (P12).

We urge everyone to get their diabetes checked, take their medication, and follow healthcare advice. Cooperation and support can make a difference. (P5).

The participants also underscored the role of community organisations in creating a supportive environment that mitigates feelings of isolation and enhances solidarity among individuals with diabetes. The participants also mentioned that connections made within the community networks provide not only emotional upliftment but also practical assistance in managing diabetes.

The community plays an important role for patients with diabetes. They often feel happiness and support because they realise, ‘People understand them, and they are not isolating them. (P11).

Moreover, the participants highlighted that holistic well-being is emphasised through ongoing emotional and spiritual support to enhance diabetes management.

We provide emotional support, saying God is with you, and they get strength. If they are willing, we also pray, and if we have money, we give it to them to help them overcome their problems. (P10).

The participants identified traditional community saving mechanisms, such as Equb and Edir, as vital resources that prioritise members facing health challenges. The participants also added that these organisations mobilise financial resources to help cover treatment costs, highlighting a strong ethic of solidarity and shared responsibility within the community.

In the women’s Edir, if a member gets sick, we donate money. If they cannot afford health insurance, we buy medicine until they recover. (P11).

If I am a member of an association and encounter health issues, the association gives me priority and provides support to resolve them as quickly as possible. (P1).

The participants explained how community organisations play a vital role in assisting individuals with diabetes to achieve financial independence through income-generating activities and training. This empowerment not only helps individuals manage their health conditions but also promotes resilience within the community.

In this community support, a person with diabetes shouldn’t have to worry. We helped a patient who couldn’t afford treatment by providing her with a shop and training. She now has a sustained income and makes a big difference. (FGD participants).

We consider purchasing blood sugar meters for diabetic patients. Encouraging them to monitor their blood sugar levels regularly empowers them to take control of their health. (P10).

Moreover, community organisations promote healthier lifestyles by offering diabetes-friendly food at social events and encouraging active participation in diabetes management. The participants also noted that members help with daily tasks to prevent complications and foster a diabetes-friendly environment.

Supporting someone promotes hope, encourages healthier living, and shows they have someone to rely on during tough times. (P10).

Advised to take medicine, adjust diet, and carry snacks and water. When others care for you, it eases a heavy burden and provides relief. A supportive community helps you let go of your fear. (P11).

We don’t let individuals with diabetes cook or chop at social events to avoid injuries. Instead of viewing them as disabled, we support them by handling the tasks ourselves, creating a caring environment. (P13).

Despite the positive contributions of community organisations, participants acknowledged that support for individuals with diabetes remains limited, advocating for greater awareness campaigns involving families, healthcare providers, and government agencies to support individuals with diabetes.

Support for diabetes is limited, and raising awareness requires a collective effort. (FGD participant).

Faith-Driven Community Support in Diabetes Management

Faith-based organisations play a vital role in providing holistic care for individuals with chronic illnesses, including diabetes, by addressing emotional and social needs while offering ongoing, culturally relevant support.

Many community members are supported by church-organised associations, such as visiting the sick in hospitals and offering comfort. The church can aid diabetes management through education and awareness while promoting prayer and adherence to medical guidelines. (FGD participant).

Participants described how religious leaders provide not only prayer but also guidance and encouragement to individuals with any health challenges, including diabetes, thereby reinforcing resilience during challenging times.

People need our support. We visit hospitals, pray for the sick, and offer strength. Prayer supports both mind and body (P10).

The participants noted that religious leaders, in their sermons, discouraged abandoning treatment. Many expressed that such discouragement from religious figures may encourage patients seeking appropriate medical care.

The church does not teach individuals to abandon their medications; instead, both faith and medicine play essential roles in managing diabetes. (P11).

We oppose those who neglect their prescribed medicine. While God can heal in many ways, we encourage seeking medical help and treatment from healthcare professionals. (P5).

We can pray for healing while also taking our prescribed medications, as prayer combined with medical treatment is an essential aspect of our faith. (P7).

Participants highlighted that prayer and fasting are essential to daily life and spirituality in Ethiopia. They stressed the importance of a compassionate approach to these practices, especially in the context of chronic illness. They also mentioned that religious leaders often visit patients, organise prayers, and emphasise the importance of spiritual support alongside medical treatment.

. . . as a religious leader, if any person is sick, the imam is told, the mosque makes dua or prayer. (FGD participant).

When people in society are sick, there is a common practice of visiting, praying, and begging the Creator to help them in various ways. (P12).

Participants noted that individuals with diabetes struggle to adhere to fasting practices during religious obligations due to challenges in maintaining stable blood glucose levels. This makes participation in prayer and communal activities difficult. The participants noted that religious leaders recognise these challenges and make an exception for individuals with chronic illness so they don’t feel guilty about not fasting.

Diabetics aren’t obligated to fast fully; their health comes first. (FGD). We reassure patients: avoiding fasting; God knows their condition. This reduces guilt and provides psychological support. (P3).

Participants noted that faith-based associations help those who can’t afford medication, with congregants reaching out to individuals lacking support. They emphasised that simple gestures, such as sharing information or offering encouragement, significantly enhance patient well-being, making this faith-driven support both spiritually affirming and materially beneficial.

Faith-based networks not only disseminate spiritual doctrine but also operate as grassroots systems of psychosocial and material support for individuals navigating chronic illness. (FGD participant).

Despite existing support, structural and cultural barriers remain. The participants also noted that religious perspectives on diabetes influence the support provided by faith-based institutions. The participants also mentioned that some faith-based leaders denounce biomedicine, claiming that only faith can heal them from their illnesses.

In our faith, we consider diabetes a challenge posed by Satan, aimed at causing suffering and ultimately separating people from God. We believe in the power of prayer. (P7).

I’ve encountered various faiths that discourage medicine or hospital treatment, claiming faith alone can cure illness. As a religious leader, I advise against this approach. (P5).

I know a pastor who told a diabetic patient to stop taking her medication, claiming she was cured. (P9).

Collaboration and Overcoming Systemic Challenges in Diabetes Management in the Community

This theme explored 2 major subthemes: 1. Enablers for community-led education and awareness about diabetes management. 2. Addressing systemic challenges and bridging gaps between healthcare and the community in managing diabetes.

Enablers for Community-Led Education and Awareness About Diabetes Management

The participants emphasised the importance of a community-driven, supportive environment to help individuals with diabetes manage their condition effectively. They also mentioned how their community organisation identified early symptoms and guides members to health facilities.

When we notice diabetes symptoms, someone knowledgeable must guide them to a healthcare facility for timely treatment. (P10).

The participants emphasised the need for a structure to raise diabetes awareness, including a community-wide programme and campaign targeting all levels of the community. They also stated that this would promote understanding, reduce stigma, and create a supportive environment for individuals with diabetes in managing their condition.

By raising awareness, we can shift societal perceptions, reduce stigma, and promote a supportive environment for people with diabetes. Together, we can learn from one another to enhance understanding and support. (P11).

I believe that increasing awareness and understanding within the community will enable people with diabetes to better manage their health. (P4).

The participants observed that community organisation activities, such as Edir and faith-based organisations, are promoting health-seeking behaviours and enhancing diabetes awareness. They highlighted that integrating diabetes education with spiritual teachings, particularly programmes held after church services, offers support and reduces the stigma associated with the condition.

Health education is sometimes provided in churches, teaching followers about conditions such as diabetes and high blood pressure, encouraging them to manage their health, take medications, and practise their faith. (P11).

Organising awareness programs during community gatherings and religious events, particularly on high-attendance days such as Sundays, can enhance participation and support. (P10).

The participants suggested using culturally and religiously significant settings to raise awareness about diabetes. They believe these familiar settings are ideal for sharing health information and monitoring their medication, exercise, and diet, particularly when led by trained community representatives who understand both medical and social aspects of chronic diseases.

In our traditional coffee program, we share information when someone is sick, helping them understand how to manage their medication and diet. (P11).

Cultural and religious events, such as Epiphany Day, church gatherings, and community meetings, can effectively disseminate health information. (P9).

In our church, we offer lessons to help everyone understand key topics. Congregants need to stay informed about their health and seek medical attention before issues arise. (P7).

The participants suggested integrating diabetes education into school curricula to raise awareness and enhance support for diabetes management. The participants also mentioned that this strategy not only informs students about health and dietary choices but also promotes empathy and understanding, potentially creating better support networks for families affected by diabetes and potentially lowering reliance on home remedies.

If the school curriculum includes how to prevent it, how to take care of oneself after diagnosis, and how to care for the family, I believe we can reduce the impact of diabetes and increase support. (FGD participant).

If children learn about diabetes at school and a few minutes are allocated during class time, they can better support family members who manage the disease. (P8).

The participants urged that healthcare professionals should educate religious leaders, school principals, teachers, and community leaders about diabetes. Once informed, these leaders can share their knowledge with their communities.

Religious leaders need sufficient knowledge to educate their communities. Working with them effectively is essential. (FGD participant).

The participants recommended raising diabetes awareness through printed materials and local media, with a focus on early warning signs to increase community awareness and enhance community support.

Sharing early warning information through leaflets and media about diabetes and non-communicable diseases will raise awareness and support for people with diabetes. (FGD participant).

Addressing Systemic Challenges and Bridging Gaps Between Healthcare and the Community in Diabetes Management

The participants highlighted significant gaps in diabetes management, noting the lack of structured support systems in communities. They described how inadequate healthcare resources and financial barriers hinder access to essential care, education, and monitoring.

There is no structural support for diabetes in the community. (P2).

The Participants noted that hospitals often lack critical supplies and that essential medications remain unaffordable for many. These financial constraints create additional challenges for community members trying to support individuals with diabetes.

The poor cannot afford the medicine. Diabetes is affecting more people than HIV, yet no organisation is working on diabetes. (FGD participant).

Despite these challenges, participants described several promising community-based support mechanisms that could serve as foundations for improvement. Some participants noted collaboration between healthcare professionals and community organisations, particularly in faith-based settings.

We have doctors who collaborate with our church and offer free treatment in certain cases, aiming to support those in need. While we believe in spiritual healing, we don’t advise anyone to stop their medication. (P7).

We work with health workers to coordinate treatment for those who cannot afford it and support those in need. (P10).

To address systemic gaps, the participants highlighted the need for strong partnerships between healthcare professionals and community organisations. They proposed that by integrating these groups, scalable solutions could be created, such as educational workshops and outreach initiatives tailored to local needs.

Suppose collaboration among churches, schools, and community organisations (Edir and Equb) could facilitate easy access to social support and diabetes treatment in communities. (P10).

Working together, health professionals and community organisations can truly make a difference in managing diabetes and supporting patients and their families. (P1).

The participants explained that sustainable solutions require formal collaboration across sectors to address the rising health challenge and to make diabetes management a shared community responsibility rather than just an individual struggle. They highlighted the Ethiopian proverb:

“ሃምሳ ሎሚ ለአንድ ሰው ሸክም ነው። ለሃምሳ ሰዎች ግን ጌጥ ነው።” meaning “Fifty lemons are a burden for one person, but it becomes an ornament for fifty persons. Diabetes is the same, manageable when carried together.” (FGD).

The findings highlight the vital role of community organisations in providing social support and facilitating self-management for individuals with T2D in Ethiopia. These results not only present key insights but also raise significant questions regarding their broader implications for diabetes management. In the following section, we will interpret these findings in relation to existing literature and explore their significance in the context of diabetes self-management.

Discussion

This study examined the role of community organisations in providing social support and facilitating self-management for individuals with T2D in Ethiopia.

This study revealed that several interconnected challenges, including both diabetes management and social support, shaped the community’s perception of diabetes. These include misconceptions, stigma, and societal reluctance, ‘disease of the wealthy’, which are key barriers that shape both personal and institutional responses to the disease. Several studies from Ethiopia support the findings,^29,30,39,40 Ghana, ⁴¹ Cameroon, ⁴² revealed that stigma and misconceptions hinder diabetes management in the community by affecting individuals’ willingness to seek support and community care for those living with the condition.

This study highlighted that a culture of shame surrounding help-seeking discourages people with diabetes from accessing support, resulting in isolation. Studies from other sub-Saharan African countries ^32,43,44 supported the findings that the stereotype can also discourage those with diabetes from seeking help or discussing their challenges due to fear of judgment or misunderstanding from the community, resulting in delays in treatment and inadequate self-management, which exacerbates the sense of ‘otherness’ and community reluctance to acknowledge or support those living with diabetes.

The current study revealed that community organisations provide informal education and encourage regular health checks at hospitals or clinics, facilitating self-management and health literacy among members. Several studies from Ethiopia supported the finding ^29,45,46 highlighted that culturally appropriate education can enhance patients’ confidence and competence in managing diabetes daily, thus contributing positively to clinical outcomes and quality of life, consistent with empirical evidence supporting patient-centred empowerment programmes.

In Ethiopia, family units and communities serve as the primary sources of social support, offering assistance and guidance for daily diabetes management. The participants stated that these organisations provide emotional, financial, and practical support for individuals with chronic conditions. The findings are supported by studies from Ethiopia,^47-49 Tanzania, and Uganda, ⁵⁰ which show that social support from community organisations is strongly associated with improved chronic disease outcomes. However, several studies from Ethiopia^29,48,51,52 and many sub-Saharan African countries^53-55 highlighted persistent gaps in health literacy, lack of practical diabetes knowledge, local cultural beliefs, and advice from family or community elders necessitate an ongoing, culturally sensitive approach and education on diet, exercise, and medication uptake.

The engagement of community organisations, such as Edir and Tsewa, effectively supports chronic disease management by optimising resources, promoting self-management, and enhancing the responsiveness of the diabetes management delivery system in Ethiopia. The current study highlighted that community organisations that facilitate transport to medical appointments, provide financial assistance for treatments, and offer emotional and social support, such as visiting individuals in hospital. Studies from Ethiopia^56,57 supported the findings that the community organisations bridge gaps left by formal health services by facilitating healthy behaviours, informed decision-making, and ultimately improving treatment outcomes for people with diabetes.

The current study revealed that faith-based organisations in Ethiopia play a pivotal role as community resources, supporting holistic care for individuals with chronic illnesses by addressing emotional, spiritual, and social needs. Research highlights that these organisations provide culturally relevant and ongoing support, such as offering words of encouragement or frequent visits to patients, organising prayer sessions, and creating a support system that strengthens a sense of community and reduces isolation.^58,59 The use of community resources to fill gaps in formal care, promoting social support and helping patients cope with daily challenges.^32,47

The current study further identified that community organisation support also extends to facilitating self-management in Ethiopia by offering vital support to individuals with diabetes, especially those unable to afford medications, through mobilising congregants to provide material aid and emotional encouragement. Studies from Sub-Saharan Africa^32,60 and the US ⁵⁸ supported the finding that involvement of religious and community groups in diabetes care reduces stress, shifts perceptions, and improves support, thereby enhancing overall resilience and leading to better psychological outcomes.

Despite the importance of support from community organisations, structural and cultural barriers remain, including religious obligations such as fasting, which creates obstacles to effective glycaemic control, and some religious leaders have scepticism or outright denial of biomedical treatments, advocating that faith alone can cure illness. A body of literature ^31,32,44 shows that such perspectives can undermine adherence to medical regimens and discourage patients from seeking or continuing formal healthcare. To address this, culturally tailored diabetes self-management programmes and community education are essential.

This dual reality highlights the complex role of faith-based organisations in diabetes care in Ethiopia. On one hand, they are essential community resources that provide social support, facilitate self-management through culturally appropriate guidance, and enhance emotional well-being. On the other hand, religious views that conflict with biomedical understanding can present challenges to integrated delivery system design by negatively influencing communities’ attitudes and healthcare utilisation. Identifying these barriers requires a respectful approach with faith leaders and communities to harmonise spiritual beliefs with medical advice and promote collaboration that ultimately enhances diabetes outcomes.

Strengths and Limitations

The strength of this study lies in its comprehensive depth and nuanced exploration of the roles of community organisations in providing social support and facilitating self-management in Ethiopia. This study prioritised sample quality over quantity, capturing richer insights from participants guided by the concept of information power. To create a relaxing atmosphere for the participants during focus group discussions, traditional coffee ceremonies were organised. This approach fosters a sense of comfort and openness, leading to in-depth conversations, as evidenced by the 89-minute session, during which participants were eager to share their stories. A validation process was conducted with the participants by presenting a summary of the findings, which allowed them to confirm that the representation accurately reflected their intended meaning. It might be a limitation that we excluded other relevant stakeholders, including policymakers, who may have had different experiences and perspectives.

Implications of the Study and Future Research

Understanding the role of community organisations in providing social support and facilitating self-management is crucial, particularly in resource-constrained settings. Multi-level interventions that involve health workers, families, and local communities are needed to address stigma, promote understanding, and offer emotional and practical support for those living with diabetes. A holistic approach that focuses on education and training for individuals, families, and community members is vital for raising awareness and strengthening social support, thereby enhancing self-management. This study offers insights into the development of co-design, which involves a culturally tailored framework and the strengthening of social support programmes for diabetes self-management in Ethiopia.

Evidence on co-designing initiatives to integrate community resources and engage organisations for better social support and self-management in diabetes care is limited. More multi-method research is needed to understand how culture and community organisations affect social support and self-management.

Conclusion

Community organisations play a vital role in providing social support and facilitating self-management for individuals with diabetes in Ethiopia. Members of community organisations are instrumental in overcoming obstacles, mobilising essential resources, and filling gaps in formal healthcare. They promote social support and help patients manage the daily challenges of living with diabetes. Additionally, faith-based organisations serve as coping mechanisms, assisting individuals to adopt healthier lifestyles. However, participants often encountered significant challenges in delivering social support and aiding self-management due to a lack of knowledge and awareness about effective diabetes management.