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Abstract
Background Self-care management support is a core component of the Chronic Care Model that emphasises the need for empowering and preparing patients to manage their healthcare. In diabetes mellitus (DM) management, health education towards self-care empowers patients to make day-to-day decisions on their own disease and live with a healthy lifestyle. Although several strategies have been undertaken to improve the management of DM in Uganda, little has been done to empower patients to manage their own health. Community-based health clubs have been suggested as a novel way of improving diabetes management especially in settings with uneven distribution of healthcare facilities and inaccessibility to healthcare services that limit patients’ awareness of the disease and self-care management. This interventional study was aimed at exploring the role of community-based health clubs in promoting patients’ health education for diabetes self-care management.
Methods A cross-sectional qualitative study was conducted among 20 participants using focus group discussions with each having six to eight members. Only patients with diabetes who seek routine diabetes healthcare services at Wakiso Health Centre IV and had participated in the 8-week community-based health clubs’ health education sessions were recruited for the study. The audio-recordings were transcribed verbatim and translated into English; thematic data analysis was conducted to generate codes and themes. Similar codes were merged and a group consensus was reached on coding discrepancies.
Results Three major themes on the role of health clubs in promoting patients’ health education were merged from the study. These include promoting sharing of experiences among patients, improving awareness of healthy self-care practices and offering sufficient patient–health worker interaction time.
Conclusions This is the first publication reporting on the role of community-based health clubs in promoting patients’ health education towards diabetes self-care management in Uganda. The ability to share experiences among patients, improve patients’ awareness on healthy living practices and the increased health worker–patient interaction time contribute heavily to the capacity-building for self-care among patients.
- Diabetes mellitus
- Community-Based Participatory Research
- Continuous quality improvement
- Community Health Services
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- Diabetes mellitus
- Community-Based Participatory Research
- Continuous quality improvement
- Community Health Services
WHAT IS ALREADY KNOWN ON THIS TOPIC
Diabetes mellitus (DM) is a chronic disease associated with various complications that may be prevented or delayed through proper self-care management. However, with the current DM management in Uganda, little has been done to empower patients to practise self-care through health education despite its central role in delaying complications and improving the quality of care.
WHAT THIS STUDY ADDS
This study highlights the potential of community-based health clubs to promote health education and thus empower patients to practise self-care management.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Based on the results of this quality improvement intervention, community health clubs should be integrated into the mainstream management of patients with diabetes. More studies are needed to quantitatively evaluate the effectiveness of such clubs in promoting health education among such patients.
Introduction
Diabetes mellitus (DM) has become a global health concern and has been increasingly contributing to the global burden of disease. By 2022, there was an estimated 10.5% (536.6 million people) prevalence of diabetes globally that is projected to rise to 12.2% (783.2 million) in 2045.1 Of this global prevalence, type 2 diabetes accounts for approximately 90%, and Africa alone contributes 4.5%2 and has the highest rate of morbidity and mortality associated with diabetes worldwide.3 In sub-Saharan Africa (SSA), 23.6 million people currently live with diabetes with a projected increase to 54.9 million people by 2045.1
Type 2 diabetes arises from decreased insulin secretion or insulin resistance characterised by chronic hyperglycaemia, and this is associated with a wide range of long-term complications such as atherosclerosis, hypertension, coronary heart disease, peripheral neuropathy, diabetic foot syndrome, renal disease and retinopathy among others.4 5 Despite the advances in the clinical management of DM, health systems in most parts of the world, especially in low-income and middle-income countries where patients cannot afford the cost of care associated with chronic diseases like DM, are still struggling to diagnose and manage DM.3 6 Such patients suffer and many succumb to various complications that would otherwise be prevented or delayed with early diagnosis, proper clinical management and appropriate self-care.7 8
Self-care management support is a core component of the Chronic Care Model that emphasises the need for empowering and preparing patients to manage their healthcare.9 10 In diabetes management, health education towards self-care empowers patients to make day-to-day decisions on their own disease and live with a healthy lifestyle.11 This enables patients to actively participate in the management of their disease based on health education and various skills to achieve targets of metabolic control, prevent or delay the onset of acute and chronic complications and thus preserve quality of life.9 12–14 This is associated with improvements in self-care behaviours like diet, foot care, physical activity, coping and stress relief, significant clinical outcomes (glycaemic control) and acceptability of the condition.12 14 15 Although several strategies have been undertaken to improve the management of DM in Uganda, little has been done to empower patients to practise self-care. As there are no data from nationwide diabetes surveys in Uganda, many diabetics continue to suffer a number of complications like retinopathies, nephropathy, diabetic foot and neuropathies that would otherwise be prevented or delayed with proper self-care management, and often such patients report to health facilities at late stages of the complicated disease. Surveys with small sizes have, for example, revealed that diabetes is one of the leading causes of blindness, kidney failure, heart attack, stroke and non-traumatic lower limb amputation in Uganda.16 In addition, 27% of the diabetics are obese, 36% are overweight17 and 4% have diabetic foot,18 yet majority are not aware that they may develop reduced blood flow in their feet caused by smoking.19
The aspect of educating patients about their health has not received the attention it deserves in the day-to-day management of diabetes, with majority of the patients lacking information and skills on how to live positively and prevent or delay the various life-threatening complications. With the healthcare system shifting from volume to value, from treatment to prevention, from patients to populations and from discrete clinical encounters to holistic care,20 there is evidence suggesting that innovative care models pairing community-based support with clinical care may be a more effective strategy for promoting self-management of chronic diseases than clinic or community programmes alone, and this is gaining traction among people with diabetes.21–24 Community-based interventions refer to healthcare services delivered outside of health facilities, within the residential and community settings of the patients in support of self-care and home care.25 26 These are in contrast to facility-based care which is delivered or based in clinics or hospitals. There is undoubted evidence that such approaches empower patients to practise self-care management and reduce clinic visits, by using the various supportive structures in the community such as family, peers, lay health workers, outreach health posts, community-based and faith-based organisations, to deliver convenient, affordable and effective care.4 This creates an integrated healthcare system that emphasises localisation of care close to the patient’s residence rather than in a hospital or clinic, promotes community ownership of the health responsibility,25 and identifies and treats the disease early, with the task shifting from physicians to nurses or lay cadres.26
Community-based health clubs have been suggested as a novel way of improving diabetes management especially in settings with uneven distribution of healthcare facilities and inaccessibility to healthcare services that limit patients’ awareness of the disease and self-care management.4 26 Community-based clubs further provide an understanding of the socially specific and community-centric components of health and wellness as integral attributes to the holistic and long-term treatment and prevention of diabetes with associated complications and can contribute to eradication of self-care barriers and stigma of diabetes within the community-enhanced patient-centred outcomes, enable patient acceptability and ultimately lead to improved patient engagement and satisfaction. Community-based programmes mainly provide health behavioural interventions through a group-based approach and emphasise the localisation of care close to the patient’s residence rather than in a hospital or clinic.4 27 28 This interventional study was aimed at exploring the role of community-based health clubs in promoting patients’ health education for diabetes self-care management towards lifestyle modification, adherence to treatment, reduced risk factors, and improved dietary behaviours and glycaemic control among patients.
Intervention
This was a nurse-led quality improvement intervention that involved establishing two community-based health clubs in two urban setting of Nansana and Mende villages along Kampala–Hoima Highway in Wakiso District in Uganda. These communities were purposively selected because they are in the catchment area of Wakiso Health Centre IV where the study team was based and where most patients attending the diabetic clinic at the health facility resided.
The study team worked with the nurse in charge and the patients with diabetes who have always sought routine diabetes services at the diabetic clinic of Wakiso Health Centre IV, a public health facility in Wakiso District in Central Uganda, to purposively identify patients who resided in these two selected villages and to assign them into two community-based health clubs based on their residential areas. Patients were involved in developing the design of the project by proposing areas where emphasis should be put in the health education talks. They participated in the allocation of participants in the respective clubs based on the known place of residence. Although the team would have the project implemented with more participants and in more clubs, only two clubs were established to match the limited financial resources the team had got through the Nursing Now Challenge Fellowship Grant. Patients from the same village were recruited into the same community club. Wakiso Health Centre IV has a diabetic clinic with over 100 patients seeking routine diabetic care services every Thursday. The clinic has only one nurse educator supporting the clinician who attends to patients at the clinic. This shortage in nurse educators remains a big challenge hindering patients’ health education, since the nurse and the clinician have very limited time amidst the workload to attend to patients’ health education concerns.
The study team physically met with the patients selected for the community-based health clubs to explain the planned activity and to seek their consent and participation. Membership was free and voluntary. Each club was assigned 10–12 members with a health educator nurse who facilitated the sessions. Each club met once a week (on Sundays) for 2–3 hours over a period of 2 months at a venue proposed by the club members (this would be a residence of one of the members) for a health education session. The health educator nurse offered health education to the club members through discussions on healthy lifestyle, diet modification, physical activity, blood sugar monitoring, adherence to medication and treatment plan, sensitisation on routine health check-ups, and social and emotional support.
The two health educator nurses were final-year nursing students pursuing a Bachelor of Science in Nursing at Makerere University. They volunteered to work on the project because of their personal interest in diabetes and underwent 3-day training in diabetes self-care management that prepared them to support the patients in their clubs. The training and health education sessions were guided by the Uganda Clinical Guidelines29 and the Diabetes Education Training Manual30 that were developed by the International Diabetes Federation Africa Region and World Diabetes Foundation for training diabetes educators in Africa. The participants also received other services like blood pressure screening, weight screening and random blood sugar testing.
Research methods
After the 8-week intervention, a cross-sectional qualitative study was conducted using focus group discussions (FGDs). FGDs were purposively used in order to get in-depth feedback from the participants on the role of the intervention in improving health education for self-management. The FGDs were held a week after the end of the implementation of the intervention. Three FGDs were held each with six to eight members and each lasted for 30–40 min.
Study population
A total of 20 participants were recruited for the three FGDs.
Eligibility criteria
Only patients with diabetes who had been seeking routine diabetes healthcare services at Wakiso Health Centre IV and had participated in the 8-week community-based health clubs’ health education sessions were recruited for the study.
Data collection
FGDs began with the interviewer assuring the participant of confidentiality, then obtaining verbal consent for participation and permission to record the discussion. Participants were given identification numbers that were used in the group discussions, transcription and this paper to protect their identity and help ensure confidentiality. Each of the participants was registered and their demographic details like age, sex, weight, years with diabetes and distance from health facilities were captured. Participants were thereafter asked questions on their views on the role of the just concluded 8-week sessions in their respective community-based health clubs. The interview guide was developed based on literature review to explore the role of the health clubs in promoting their health education towards diabetes self-management. The interviewers probed for clarification on the participants’ submissions to ensure that there was a clear understanding of what the participants said. All discussions were conducted in Luganda, a local language that the participants would freely and extensively express themselves. All discussions were audio-recorded and backed up on a hard drive.
Data analysis
The audio-recordings were transcribed verbatim and translated into English by the research team members who read through several times to grasp an initial understanding of the discussions. Reliability was assured by manually cross-checking the recorded interviews against the transcriptions. Later, a third-party reviewer (fluent in both Luganda and English) independently verified each of the transcripts, checking for and editing inconsistencies in translation. Thematic data analysis was conducted to allow the team to become familiar with the data, generate initial codes, and identify, revise, define and name themes. To develop the preliminary coding scheme, the research team reviewed the transcripts that underwent an open coding process and assigned codes to each unit (words, sentences and/or phrases) of data that was considered relevant. After the initial coding phase, the researchers merged similar codes and met to reach a consensus on coding discrepancies.
Results
This interventional study was aimed at exploring the role of community-based health clubs in promoting health education for diabetes self-care management. As a quality improvement study, the description of the intervention and its outcomes is based on the Standards for Quality Improvement Reporting Excellence guidelines.31 A total of 20 club members participated in the FGDs. Of these, 12 were female and 8 were male, with age ranging from 38 to 65 years and residing within a radius of 1 km from the health club’s meeting point. Majority (16) had lived with diabetes for 5 or more years, while four participants had been diagnosed in the last 2 years. According to the thematic analysis of the data, three major themes on the role of community health clubs in promoting health education for diabetes self-care management were developed. These include promoting sharing of experiences, improving awareness of healthy living practices and offering sufficient patient–health worker interaction time. The various themes and the key corresponding quotes are displayed below.
Health clubs promote sharing of experiences
The community-based health clubs gave the participants an opportunity to share personal experiences of living with the disease, noting that there is always limited time at the health facility to share personal experiences. Through the sharing, participants noticed that what they go through is similar to others, and this helped build their confidence.
Attending these sessions has helped me to learn what my colleagues are going through. At times you may think it’s only you having challenges with diabetes but when we meet, like here and you listen to what other people with disease go through, you get confidence that you are not alone and cool off the stress. (FGD 2)
You see, we all live on this same village and I have met most my colleagues here at the health center when we all go for clinic days, but we had never gotten an opportunity to share amongst ourselves how we can support each other to manage this disease like we have done here. (FGD 1)
Participants shared experiences of the importance of disclosure of diabetes illness to family members and their involvement in supporting self-care. As some participants reported having been hesitant to disclose their diabetes status to family members, others revealed how important it is to share their illness with family members. It was also noticed that making their family members aware of their diabetes status and involving them in the day-to-day management of the disease help them understand better how they can help them in case of an emergency.
…as I listened to other members of the club share their experiences, I learnt of things that I had never taken serious. For example, the other lady who said that she has taught her 8-year-old daughter to help in injecting medicine [insulin] touched me so much because, I have personally never disclosed to any of my children who are even older than hers that I have diabetes. (FGD 1)
I stay with my 8-year-old daughter and you have always seen me come with her at the clinic, she now knows that I must have my medicine before I eat and she reminds. (FGD 1)
Health clubs improve awareness of healthy living practices
Many of the participants acknowledged the role of the club interactions and sessions in helping them get a better understanding of what they are supposed to do in order to have a healthy lifestyle. The need for routine eye check-ups, dietary control, physical exercise, foot care, treatment adherence and monitoring blood sugar was clearly highlighted.
We have always been told to go for eye checkups but I had never understood the importance like now after the nurses have explained it here. (FGD 2)
I really appreciate the nurses for the teachings they have given us. The way they have explained things like medicines we use, controlling blood sugars by what we eat, physical exercise, you see that they are trying their best for us understand. (FGD 3)
I have always had challenges with my feet, like you see, I have lost my toe nails because of not taking enough care…, the nurses have taught us how to care of the feet by putting on closed shoes, cleaning them very well and checking for them every day to identify wounds. (FGD 1)
Based on the guidance we have gotten from these meetings, I feel I can now plan my meals very well, take my medicines as guided by the doctor, monitor my blood sugars to keep myself healthy. (FGD 2)
Health clubs offer sufficient patient–health worker interaction time
Participants commended the clubs for creating more time for them to interact, consult and have extensive health education with the health workers, which they can never get at the health facility. The shortages in staff and the high patient–health worker ratio at the health facility limit the time of interaction with health workers dedicated to explain the care plan for every individual patient.
At the health facility, no nurse or doctor can give you all the time you need to ask questions like we have been doing here. (FGD 3)
Bringing the services to our home places helps us to have more time with health workers because no one is on a hurry, people pay attention and learn unlike in the hospital where you may be worried of the children you have left home. (FGD 3)
For the first time in two years, I had never gotten a nurse or doctor who explains the meaning of my blood sugar results…they often say this is high or this is low without telling you what the good result should be but the nurses here have explained everything so well. Now, even when I test myself at home, I can now tell what the result on the machine [glucometer] means. (FGD 2)
Discussion
Although community-based care has been considered an important add-on approach especially for patients with chronic diseases like diabetes,4 8 32 such initiatives have not been well integrated in diabetes management in the SSA and most specifically in Uganda, thus the limited publications on their role. This study explored the roles of community-based health clubs in promoting health education for self-care management among patients with diabetes. Three major roles are highlighted by this study. These include promoting sharing of experiences, improving awareness of healthy living practices and offering sufficient patient–health worker interaction time.
Health clubs promote sharing of experiences among patients
In this study, community health clubs were commended for giving participants an opportunity to share experiences in self-care, disease management, associated emotions and coping strategies. This way helped patients bond and learn from each other, generously advise each other and as earlier studies have reported, provided an increased understanding of their condition,8 33 which is key for patients’ acceptance of the disease and a cornerstone towards lifestyle change20 26 and health-seeking behaviour of the patients.22 Participants also empower each other towards self-care management through sharing experiences. The peer support developed through sharing offers several alternative ways of dealing and coping with life and disease.34 The facilitator (in this case, the nurse educator) for such sessions can support the learning and sharing by structuring the format33 and ensuring that all participants are actively involved, which made them not the sole source of health information and disease-coping strategies. With this kind of approach, patients own the disease and appreciate that they are not alone.
Health clubs improve awareness of healthy living practices
People with chronic illnesses are highly interested in health information and want to know everything about their health.35 Studies have revealed that patients with chronic diseases like diabetes wished they were better informed about the risks and consequences of their unhealthy living practices at that time when the disease was diagnosed.11 36 This would have raised their awareness of healthy living practices towards performing optimal self-management and thus prevention or delay of complications. However, in Uganda, few patients with chronic diseases receive health education about the disease and the necessary healthy living practices at the time of diagnosis, thus the knowledge gaps regarding the preventable complications of diabetes.37 For example, in one of the studies in Uganda, more half of the participants had limited knowledge about their disease and treatment.38 This may be attributed to shortage of health workers, heavy workload and limited interaction time among others. Participants in this study reported improved awareness of the healthy living practices needed for diabetes self-care management from the health education sessions facilitated by the nurse educators and the sharing of experiences from peers. Increased awareness of healthy living practices has greatly contributed to improvements in participant self-care aspects like nutrition, physical activity, glucose monitoring, psychosocial outcomes and treatment adherence.20 32 According to the Chronic Care Model, promoting active participation of patients is crucial for chronic self-care management, and improves health-seeking behaviour and health outcomes.10 20 23 With a better understanding of the need for health practices like eating a healthy diet, exercising, monitoring blood glucose and routine screening of eyes, patients reported willingness to change their unhealthy habits. This relates to findings by other researchers that patients who were aware of the health practices and their importance on the control of the disease had emotional well-being and confidence to manage the disease.34 36
Health clubs offer sufficient patient–health worker interaction time
Although health workers are the most trusted sources of health information for patients,35 37 39 studies have reported that the limited time they often have to interact with patients undermines the quality of health education offered.33 34 The limited interaction time at the health facilities remains one of the complex institutional and healthcare system-level barriers to effective care delivery,40 with sessions sometimes limited to as low as 2–3 min only.41 The limited interaction time is partly attributed to lack of motivation, heavy workload, staff shortages, poor communication skills and some healthcare professionals who are unable to address patients’ broader needs, thus neglect patient needs and concerns.36 42 43 This leaves many patients unsatisfied with the health education acquired and feeling incompetent to manage self-care,44 especially those with chronic diseases.
The health worker’s interaction with the patients must be enthusiastic, motivated and responsive to the individual patient’s needs,42 so it requires sufficient time for two-way sharing. Having sufficient interaction time with care providers improves patient engagement in diabetes management and the recommended health-improving strategies.3 8 In this study, each health education session was 2–3 hours and a trained nurse educator was involved in each club to offer health education to the patients. These empowered patients to manage their own health, modify their lifestyle, and set self-care management goals and targets and how to achieve them. This was another unique feature with this intervention that reinforced the quality of health education offered in the clubs. Although it may be challenging for our current healthcare systems that struggle with staff shortages to assign health workers to every club in case the intervention is adopted, creative approaches like task-shifting could be initiated to fill the gap. Task-shifting of roles from physicians to nurses or lay cadres has for long been applied as an essential component of community-based care.4 15 26 For example, task-shifting from health workers to peers has successfully been employed in the maternal and child health activities and in HIV/AIDS response for community care and has yielded positive results and patient clinical outcomes.4 15 Therefore, in a resource-limited setting, the nurse educator’s (who is also a patient with diabetes) role would be shifted to being a ‘diabetes champion’, who has been trained to help educate and support fellow diabetics. With sufficient health education interaction time, the health educator interacts with each participant in the group,33 such that both patients and the educator speak, share and listen to each other without interrupting each other, to freely ask questions for clarity, express their opinions, exchange information, and grasp and understand better.40 Adequate communication with healthcare professionals is a sign of empathy, emotional support and compassionate care, and increases the capacity, confidence and efficacy of the patients to take care of their own health.36
With the evolving healthcare practice that focuses on minimising hospitalisation of patients, health education that builds confidence in self-care management among diabetics to delay or even prevent complications necessitates a coordinated response that involves integrating services up to the lowest community level.5 In Uganda, this approach of community-based health clubs has been previously used for patients with HIV and in maternal health activities. Therefore, similar interventions could be adopted for patients with diabetes and could leverage on the lessons learnt and the success of this approach to improve screening and early diagnosis, as well as patients’ engagement in self-care.
Limitations
This interventional study was rolled out in only two community-based health clubs with an extremely small sample size. This was attributed to the limited human and financial resources we had for the project, which may affect the generalisability of our findings. Moreover, the cross-sectional study did not assess the role of the clubs over a long period of time, did not quantitatively assess the effectiveness of the clubs and was not able to account for various factors that would have influenced the role of the clubs in promoting health education. We recommend future studies quantitatively assess the effectiveness of the clubs and their effect over a longer period of time using a standard tool.
Conclusion
This is the first publication reporting on the role of community-based health clubs in promoting patients’ health education towards diabetes self-care management in Uganda. The ability to share experiences among patients, improve patients’ awareness of healthy living practices and the increased health worker–patient interaction time contribute heavily to the capacity-building for self-care among patients.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
The study received administrative clearance from Wakiso Health Centre IV. Informed consent was taken from the patients for their voluntary participation in the study.
References
Footnotes
Twitter @DepaulLubega
Contributors ML is the guarantor of this study and developed the study concept. ML, JO, BN and SNM designed and implemented the intervention, collected data, analysed the data and wrote the manuscript.
Funding This quality improvement research was conducted as part of the Nursing Now Challenge Fellowship but there was no specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients were involved in developing the design of the project by proposing areas where emphasis should be put in the health education talks. They participated in the allocation of participants in the respective clubs based on the known place of residence. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.