Diabetes self-management: a qualitative study of education needs, practices and caregiver support in the Keta Municipality of Ghana

Conceptual framework

The conceptual framework (figure 1) builds on the Theory of Self-care in Chronic Illness and serves as the guiding foundation for the research.26 The selected theory is deemed relevant because of its alignment with the study’s objectives. The framework is composed of three main interconnected blocks: patient factors (block 1), self-care education (block 2) and diabetes self-care (block 3).

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Patient factors encompass various elements such as demographic, sociocultural, socioeconomic and health-related factors.26 27 These patient-related factors play a crucial role in influencing diabetes self-care practices. When these factors are favourable, they can positively impact self-care behaviours. Conversely, when patient factors are not conducive, they hinder effective self-care practices.27

Self-management education represents the educational aspect of diabetes self-care. It includes factors related to patient education, awareness and understanding of diabetes and its management.26 28 Adequate self-management education is essential for empowering individuals with diabetes to actively manage their condition and make informed decisions regarding their self-management.27 28

Diabetes self-management constitutes the core aspect of the framework and encompasses all activities and behaviours undertaken by individuals to maintain their health while living with diabetes.27 This block comprises three key elements: self-care maintenance, monitoring and management practices. These elements collectively form the basis for effective diabetes self-management.

The linkages between the blocks are vital for understanding the interactions within the framework.26 Patient factors and self-management education are independently linked to diabetes self-management. Patient factors influence diabetes self-management practices directly while self-management education acts as an additional factor that impacts the individual’s ability to engage in effective self-management. The framework, thus, helps explain the complex interplay between patient factors, self-management education and diabetes self-management, ultimately contributing to the identification of challenges and education needs related to diabetes self-management in the Keta Municipality of Ghana.

Study design

This was a qualitative study which adopted a phenomenological design. The design is flexible as it can answer all different kinds of research questions including what, why and how of a concept.29 This design, thus, allowed this study to understand the social and psychological phenomena of self-management in diabetes management from the perspectives of the individuals living this experience.30 The study’s interest was to provide an understanding of the experience of living with diabetes and self-managing the condition through education and caregiver support.

Study setting

The study was conducted in the Keta Municipality in Ghana’s Volta Region. The municipality is bordered on the North by the Akatsi South District, to the East by the Ketu North and South Districts and to the West by the South Tongu District. On the South, it shares a border with the Gulf of Guinea.31 The Keta Municipal Hospital, located in Dzelukope in Keta, was established in the year 1926 but opened for official use in 1935. It is a secondary-level facility and receives clients from across the municipality and neighbouring towns for primary and secondary healthcare including diabetes care. The hospital has a capacity of 110 beds and employs a staff of 6 medical doctors, 179 nurses, 38 midwives and 175 allied health professionals. Among its 12 departments are the outpatient department, public health unit, records unit, maternal and child health unit, mental health unit, hypertension and diabetes unit, and laboratory unit, among others.

Study population and sampling

The study population was people living with T2D for not less than a year who access diabetes care at the Keta Municipal Hospital and health professionals providing diabetes management services at the facility. Participants were included in the study if they had been diagnosed with T2D for at least 1 year and were at least semidependent. This criterion was to ensure that selected participants had established self-care routines and had received some education on diabetes management. The level of independence was set from independent to semidependent to ensure that the participants could engage in self-management activities. They related their experiences with self-management education as part of the management service they receive and their self-management practices and impacts. The healthcare providers running the diabetes clinic were purposively included to add expert insight on the experiences in diabetes self-management of patients who attend the clinic. The study sample size was achieved through data saturation, a point in which no new insight was gotten from included participants and redundancy was attained. Overall, 16 people living with diabetes and 2 healthcare providers from the 5 health professionals at the diabetes clinic of the hospital participated in the study.

The study employed a purposive sampling technique to recruit potential participants who met the inclusion criteria. This approach allowed the researchers to screen and select individuals with specific characteristics of interest carefully.32 In this process, potential participants were identified and approached based on their relevance and suitability to the research objectives, ensuring participants possessed the desired attributes necessary for the study’s focus.

Procedures

Data for the study were collected using two in-depth interview guides (online supplemental file S1); one for people living with diabetes and the other for health professionals providing diabetes management services. The questions were crafted from literature and experts’ contributions and encompassed: participants’ sociodemographic information, self-management practices, caregiver support and challenges in self-management and self-management education (approach/strategy and topics/content) and education needs. The comorbidity status of the participants was also explored. This was to afford the study to examine whether diabetes self-management practices were influenced by the comorbidity status.

Face-to-face in-depth interviews and expert interviews were employed to collect data from participants living with diabetes and healthcare providers with the support of two trained research assistants and CT. The exit strategy was used in recruiting the participants, that is, potential participants were approached by the research team after receiving their routine services and those who accepted to participate were selected. However, appointments were scheduled with service providers to interview them at their convenience. The in-depth interviews with people living with diabetes were conducted using three languages namely, Ewe, Twi and English whereas only English language was used in the expert interviews. All interviews were tape-recorded with the participants’ consent and took 20–35 min. Field notes were taken during the interviews.

All data and its copies were securely password protected on the principal investigator’s personal computer without access by third parties to maintain participants’ confidentiality. All study data have been carefully deidentified to remove any identifiable information about the participants. In addition, pseudonyms have been used during data analysis to protect participants’ anonymity.

In light of the ongoing COVID-19 pandemic, the research assistants and study participants adhered to physical/social distancing guidelines, wore face masks throughout the interview and maintained regular handwashing or use of hand sanitiser. These measures were taken to prioritise the health and safety of all persons involved in the research.

Data analyses

All the audio recordings were transcribed into English verbatim. The transcripts were cross-checked in detail with their digital recordings (playback) to identify and rectify any omissions and inaccuracies and assess the consistency and articulacy of the translations. The data analysis was phenomenological and inductive. The interpretative phenomenological analysis (IPA) was adopted using NVivo V.12 with manual coding to analyse the data via four sequential stages and codes identified following the guidance set by Moustakas.33 Initial codes were independently produced by FIS and HA who are expert qualitative researchers with experience in NCDs research but were not directly involved in diabetes healthcare. Any differences were reconciled to ensure the reliability of the results produced. Disagreements were resolved through discussion between the two researchers conducting the analysis. If consensus could not be reached, a third researcher, CT, was consulted to provide additional input and reach a resolution.

Sociodemographic characteristics of study participants

Table 1 shows the sociodemographic characteristics of the participants living with diabetes. There were eight males and eight females. Most of them (75.0%) were aged more than 60 years. The majority of them (81.3%) were working. While 43.8% had been diagnosed with diabetes within 1–5 years, 31.2% had been diagnosed more than 10 years ago. The majority of the participants (62.5%) reported having comorbidity with hypertension.

Thematic results

Three main themes emerged from the analysis. These were diabetes self-management education, diabetes self-management practices and associated challenges, and the impact of caregiver support in diabetes self-management.

Diabetes self-management education

Table 2 presents the subthemes on self-management education among the participants. It shows that all the participants received self-management education. However, two main gaps in self-management education were reported, namely; extending education to close relatives and contacts and individualised self-management education.

Self-management education was explored and all the patients noted that they are given self-care education during services. They, however, explained that the education is provided during the diabetes clinic, a session dedicated to providing management services to diabetes clients. As part of the general diabetes care service being provided, there is the first session (between 30 min and 1 hour) where the nurse/health professional at the unit provides self-management education on topics such as appropriate dietary practices, adherence to management decisions including medications/injections, wound prevention and care, and physical exercise. Starchy food is a common term used by healthcare professionals in Ghanaian context to denote carbohydrates for easy understanding by patients. This comes at the backdrop that starch breakdown into glucose ineffectively in people with diabetes than it does in people without diabetes.34 Starchy foods can raise blood glucose levels relatively quickly and significantly due to their carbohydrate content.34 The following quotes present the participants’ views:

Yes, (they educated us) on food. They said she should avoid sugar, meat, starchy foods etc. They said we should take tom brown and wheat. They said we can even use the tom brown to cook Banku.—Participant 1

They have been educating me for some years now but now they have stopped. They said we should not eat starch foods and meat, we should also avoid alcohol, and carbohydrates and eat only one ball of Kenkey. we should not eat too much but we should eat in bits at frequent intervals.—Participant 3

We were told one can lose eyesight and become paralysed as well. We are educated on our diets. …alcohol and starch-containing foods. Taking good care of yourself, making sure to avoid cuts (wounds). —Participant 5

This finding was supported by the health professionals who emphasised the importance of self-management education as a key component of the service. They clarified that if a patient expresses the need, they arrange individual sessions to address the patient’s specific concerns and provide personalised education. For instance, a nurse said, ‘…After that, we check other vital signs then we give education, we arrange them for consultation. After consultation, some people who need individual counselling are given those talks.’ The other health professional also detailed the comprehensive education provided to newly diagnosed individuals with diabetes encompassing various aspects of diabetes, including understanding the condition, recognising its signs and symptoms, navigating diagnostic tests, managing medications and making important lifestyle changes to better manage the condition. He said:

For the newly diagnosed, we give them an overview of diabetes, we teach them what diabetes is, the signs and symptoms, diagnostic investigations, medications that they can be put in and then how to manage it. Most of the time, we talk to them about exercise and lifestyle modifications. These are what we educate them on.

Additionally, participants reported that the education sessions were consistently conducted in a group setting. They explained that during clinic sessions, education takes place in the waiting area, where nurses provide information and address patients’ general and specific questions and comments. Some participants also mentioned that visual aids such as charts and photos are occasionally used during the education sessions to enhance understanding. Their views are summarised below:

We are educated in a group and after the education, we are asked if we have any questions or clarifications. So, we ask questions based on our individual experiences and they explain to us. Sometimes, they use flip charts and sometimes they do not. Since I started coming here, they used the chart about 3 times. These charts that they use have images of our body and various body organs on them.–Participant 10

They show us photos of people who have managed their condition badly which has led to amputation of their limbs.–Participant 9

In support of group education and the use of charts, a health professional explained the process of how they interact with those with diabetes when they come for healthcare services, where they initially gather them for a group discussion, provide general information and then offer individual counselling, especially to those who are referred to their unit or those with unstable blood sugar levels. The use of visual aids like flip charts to aid in their educational efforts was also noted. She remarked:

First, when they come, we group all of them and talk to them. Then after that, we give them individual talks especially those who are being referred to our unit. Or those who will call us, sister please I want to talk to you. or those we have identified that their sugar level keeps shooting or is not stable. So, we want to find out what exactly is causing it. But we normally give them a general talk first to identify those who need individual counselling. We use flip charts most of the time.

However, one participant mentioned that he also engages with healthcare providers during individual information sessions, which usually include one-on-one services like blood sugar and blood pressure checks and the issuance of prescriptions. He (Participant 12) said, ‘No, it is group-based. But on two occasions, I had to engage the facilitator myself.’

Some participants expressed that self-care education has positively impacted their practice of self-management and overall management outcomes. They highlighted how education and counselling have played a vital role in dispelling fears, improving their knowledge about diabetes and positively influencing their lifestyle and well-being. Their views are expressed below:

…It is through this education I have changed my lifestyle of eating. I just eat anything at all but after practising what I learn from here, my sugar level now is always okay.—Participant 8

Yes, we are educated on things to eat, and how to live and they also encourage us. Initially, I was scared that if someone has diabetes, the person will die and it was through these conversations and education that I am relieved now. Initially, I was scared, I was growing lean and was thinking a lot but now I am okay.—Participant 9

Furthermore, the study identified two primary education needs for self-management: extending self-care education to the general population and individualising self-care education to address each individual’s specific situation. Several participants suggested that health professionals should reach out to communities, churches and other social gatherings to provide diabetes self-care education, enabling those close to individuals living with diabetes to offer valuable support. A male patient (Participant 15) stated, ‘…nurses should be extending care to your family. …but I think that one will be too much for them. That is why sometimes I bring people to the church to educate the congregation on certain aspects of diabetes management.’

Another participant emphasised the importance of individualising self-management education based on an individual’s specific circumstances, environmental factors and social makeup, rather than providing generic information. The participant with diabetes (Participant 13) said:

It would be very difficult because not everybody is having the money. They can advise that especially the food that we take, we should abide by the hospital instructions common to us. Because somebody will go home and if he or she does not have anything and the “Akple” is prepared for him or her, they have no option. Exercising too is another one. One does not need to go too far away, stay around the house.

Diabetes self-management practices and associated challenges

The study further explored participants’ practice of diabetes self-management, their motivations and the challenges they faced as shown in table 3. All participants reported engaging in one form of self-management practice or another, however, most participants did not feel involved in their care by healthcare providers. Three main challenges to self-management were identified: a threat to time availability posed by job role, medication finishing before the expected time for review and unavailability of medications at the facility.

All the participants practised some self-management activities including self-monitoring using a blood sugar testing device, eating appropriate foods and at appropriate times, adherence to medications/injections, physical exercises and adherence to food restrictions including alcohol. The following are their views:

We always wake up at dawn to go fishing and I have been carrying the machine every day for some distance and that is also a form of exercise because we were told not to rest in one place.—Participant 5

Normally, I do some health walks. As a man, you have to take some strong alcohol but it came to a point I had to minimise it. And I said I am off the alcohol for now. Apart from fruits, I do not take any starchy food like cassava dough, I only take corn flour.—Participant 6

However, a participant stated that he practices self-medication in addition to the medications received from the hospital. He (Participant 3) said, ‘After a meal, I do walk for a while before taking my bath and finally go to bed. In addition, I bought another medication and have been taking it with those received from the hospital.’

The motivation for the level of self-management was explained by some of the participants. This included cues from negative health outcomes for individuals living with diabetes who did not practice adequate self-management and the education received during visits to the hospital. On taking a cue from the negative outcomes of a known person with diabetes due to non-adherence to self-management, the participant explained that he practices self-management as much as possible to avoid ending up with the same fate. The male with diabetes said:

Alright, I should say some people are completely broken down, some like I said have been amputated. Recently, a cousin of mine who is also a pensioner died of diabetes. You will become a physically handicapped or challenged person. Looking at such examples, I advise myself to be cautious to prevent further deterioration of my health.—Participant 6

Also, on self-management practice resulting from self-management education received, a participant with diabetes noted:

On the food aspect, we are encouraged to eat lots of vegetables. Initially, I did not like vegetables but now it is a part of my treatment, so I am eating them now. With salad like this, I like the cream a lot but we were educated not to take it because without it I cannot take salad, it was difficult for me initially. But now I have realised it is not helping me so I have stopped. Now, I only use palm oil for cooking.

Others explained that self-management practice is to ensure their long-term survival with the disease. They cite that these activities can help them control the condition. A man (Participant 7), for instance, said, ‘Usually, it is a matter of taking care of yourself. Do not go about taking anything if you want to live longer. Manage it and you will survive. That is all.’ Another averred, ‘I was educated that when you do not adhere to treatment and the sugar level goes up, it might lead to other complications including death, so this is what keeps me going.’

Some participants argued that their self-management practice has impacted positively on their health. They explained that their self-management practice has limited some complications and ensured their well-being. For instance, a male participant (Participant 7) noted, ‘It is having an impact. Because I realised that I am now getting arthritis, but I am conquering it through the exercise.’ Another (Participant 10) opined:

From the very beginning, I did not see any improvement but for about a month to two now, I have seen an improvement. I was weak initially; I could not even walk down the stairs by myself. I had to support myself with a walking aid.

Although all the participants practice some level of self-management in their diabetes management at home, some of the participants noted some challenges that hinder their ability to adequately maintain their health. These challenges have resulted in their inability to adhere to diet restrictions, medication and exercise regimens among others. Three main challenges to self-management practice identified were inflexible job role, medications finishing before the review date and unavailability of medications at the facility. While some participants noted they have to work and care for themselves without any support which limits their adherence to medication and physical exercise regimen, others posited that their self-care practice is hindered by insufficient medications given for the stated review period. They explained that they are unable to take the medications when they finish as they wait till the stipulated review date before going for additional doses. Participant 4 for instance, stated:

They give me the prescription, if I go and I do not get it, I go and buy it myself. At times, they give me a date to come but the medicine finishes before the day. I have to go to the pharmacy and buy it.

On unfavourable job roles, some participants explained that their job demands such as time and travel commitments hinder their self-management practices. They noted that due to reporting time for work, for instance, they are unable to engage in physical exercises or have sufficient sleep. Participant 3 said:

Yes, they said we should eat on time. At the onset, mine was serious so I was told not to ride a bicycle, or motor, and not even drive. I should avoid strenuous activities and standing for so long. But truth be told, I have been doing all these things because there is no one there so I do all kinds of strenuous work before stopping the carpentry.

Also, the unavailability of medication at the hospital hinders adherence to medication regimens among some of the participants. Participants noted that they are willing to adhere to the medication regimen but sometimes when they run out of medication, they are unable to get a refill at the hospital due to stock outs. Participant 7, for instance, noted:

I may say they did not write the actual number of tablets I should take. At times, you have to buy, you have to pay for the medicines. They will say they do not have the medication. You have to pay something.

Impact of caregiver support on diabetes self-management

Caregiver support and its impact on participants’ self-management practices were also investigated. Three subthemes emerged regarding caregiver support, namely, support with chores/work, monitoring adherence to medications and preparation of appropriate meals (table 4). Most of the participants had relatives such as siblings, children or spouses as their caregivers.

Regarding the kind of caregiver support received, it was noted that most of the caregivers provided financial, social and emotional support to the participants. For instance, some participants received financial contributions to their care such as paying hospital bills and covering the cost of recommended meals as well as support in preparing their meals. A female participant, for example, said:

She is a fishmonger. She smokes and sends fish to Togo for sale. She cooks for me too. If I do not have it for over three months, she cooks for me to eat. I brought her here (hospital) and we were educated on the management. So, she ensures I eat only what was advised.—Participant 5

Others due to this support had time to rest, monitored to adhere to medication and physical exercise regimen.

So sometimes when I forget some things, it is my husband that reminds me. He also encourages me to adhere to the treatment regimen because he takes my books and goes through them. He assists me in the purchase of the medications and also reminds me of what to do and not to do.—Participant 8

Strengths and limitations

The study depended on self-reporting by participants regarding social behaviour and thus may suffer from social desirability bias. However, participants were encouraged to provide as much as possible honest responses. Some questions sought to explore issues retrospectively which has the potential of risking recall bias. The use of probes allowed for prompts to increase recalling past events.