Lived experiences of diabetes self-management among persons with disabilities in rural Tamil Nadu – a case study approach

Abstract

Background

People with disabilities have numerous challenges in diabetes self-management. Poor self-management leads to the worsening of disability and secondary complications of diabetes. This study was conducted to explore the challenges in diabetes self-management and the factors influencing diabetes self-management among people with disabilities.

Methods

We conducted 16 case studies among people with physical, neurological, visual, hearing, and multiple disabilities who were affected by diabetes. We adopted a thematic content analysis approach to analyse the data.

Results

People with disabilities have challenges in adopting healthy diets as they are unable to purchase and consume fruits and vegetables which are costly, unavailable, and inaccessible. They have difficulty in doing physical activity due to lack of inclusive public spaces which are inaccessible, lack of motivation, and dependence on others for their mobility. Irregular drug supply in the public health system and unaffordable cost of drugs hamper adherence to medications. Laboratories are inaccessible to people with disabilities thus preventing monitoring of blood sugars. They have poor quality of life, life with pain and mental health issues, which prevent adoption of self-management behaviors. The intersectionality of age and gender with disability worsens self-management behaviors. Inaccessible health system, poor quality of health care and insensitive health care providers further complicate self-management.

Conclusion

This study documents the challenges faced by persons with disabilities in practicing diabetes self management. There is a need for public health policy and planning that is inclusive of persons with disabilities to make access to diabetes care universal.

Introduction

The National Family Health Survey (NFHS) 2019-21 revealed that the prevalence of diabetes in India was 16.1% [1]. Analysis of the same NFHS 5 data revealed that the overall prevalence of disabilities in India was 4.52% of which 44.7% were locomotor disabilities and 20.28% were mental disabilities [2]. Given this heavy burden of diabetes and a high prevalence of all forms of disabilities there is a need to study the intersection of these two conditions.

People with disabilities often receive poor-quality diabetes care, inadequate information regarding diabetes management, and counselling on diabetes self-management. This is often attributed to barriers in communication in persons with speech and hearing disabilities and decreased cognitive ability of people with intellectual disabilities. The health system which is not inclusive to people with disabilities does not provide access to newer methods and technologies for diabetes care [3]. A study done in India reported that providers often feel that they are unable to do beyond the prescription of medicines for people with disabilities for their diabetes self-management. There is a lack of proper guidelines for diet and physical activity components for self-management of diabetes for people with disabilities. Accessibility of secondary or tertiary care health facilities also poses a challenge for annual blood examinations and screening of secondary complications [4].

Diabetes is a complex disease to treat as it demands major adjustments in the life of the person who develops the disease. These behavioural adaptations that a person with diabetes takes is referred to as diabetes self management behaviours. It is well proven that effective diabetes self management is a core component of treatment of diabetes [5].

A nation wide survey conducted in the United States of America showed that individuals with physical disabilities were less likely to engage in physical exercises, have at least one annual dental check up and take their tablets regularly [6]. Another study revealed a poor family support in self-management of diabetes in India even among persons without any disabilities [7]. It is likely that the situation is same or worse in those with disabilities. Adult people with disabilities have a higher incidence of serious health issues and hospitalization rates when compared with people without disabilities. Barriers to healthcare among people with disabilities include negative attitudes of healthcare providers, cost of treatment, transportation issues, distance, and inadequate drugs [8]. A systematic review found that diabetes self-management in various components such as diet, physical, activity, and foot care was poor among people with disabilities [9]. Another literature review found that people with intellectual disabilities experience frustration over lifestyle adjustments, especially for dietary modifications and social stigma for insulin usage in public spaces as they can be perceived as drug users [10].

Purpose of the study

There is a need for a study to explore the lived experiences and factors that influence diabetes self-management among people with various types of disabilities. This will help to devise strategies and policy recommendations to address the identified barriers to adoption of self-management behaviours among people with disabilities.

Qualitative approach and paradigm

We utilized a explanatory qualitative case study method to understand the lived experiences and factors that influence diabetes self-management among people with disabilities. We used a social constructivist research paradigm with a relativist ontological position and a subjective epistemological stand. The advantage of the case study method is that it views the individual cases, here persons with disabilities who have diabetes, in their social context and studies their experiences in depth to identify the “what”, “why” and “how” of diabetes self management [11].

Theoretical underpinning

We explored diabetes self-management behaviors as defined by the American Diabetes Association among the persons with disabilities. Of the various behaviors, we identified diet, exercise, adherence to medications and monitoring of blood glucose levels to explore in detail as these were the core essential self-management behaviors [12]. We explored the barriers, challenges and difficulties in adopting these behaviors. We then adopted the socio-ecological model and theorized that the following factors are likely to influence access to resources and adoption of these self-management behaviors namely, individual-level factors including quality of life of the persons with disabilities, social level factors including restricted mobility, intersectionality between age, gender and other social structures, and health system-related factors [13].

Researcher characteristics and reflexivity

The interviews were conducted by RT and VG. RT is a male public health practitioner and researcher and is a physiotherapist by training. VG is a male public health physician and researcher and is a medical doctor by training. VG also runs a diabetes clinic in a rural area through a voluntary health organization. The experiences of VG in providing diabetes care for persons with disabilities and the experience of RT in providing disability care are likely to have influenced the interviews, analysis, and interpretation. HS and KK do not have direct experience of caring for persons with disabilities and hence their perspectives bring a different dimension to the analysis.

Study setting

The study was conducted among people with disability living in the Thirukkazhukundram block of Chengalpattu erstwhile Kancheepuram district in the State of Tamil Nadu. Tamil Nadu has one of the most renowned and robust public health systems in India. The State has a separate public health cadre at the district level [14]. As per the National Family Health Survey (Round 5), the prevalence of diabetes among women and men in the Kancheepuram district is 22.9% and 24.3% respectively [15]. Despite providing free bus services in the public transportation system for people with disability in Tamil Nadu, the accessibility of the buses and trains is poor as they are not disabled-friendly [16]. There is a lack of disability-oriented healthcare services which acts as a barrier to accessing health for people with disabilities in Tamil Nadu [17]. The Tamil Nadu government recently launched the ‘Makaklai Thedi Maruthuvam’ scheme wherein services of screening and medicines for non-communicable diseases (NCDs) such as diabetes and hypertension are provided at the doorstep. However, the scheme has various challenges in implementation at the field level such as a lack of manpower, poor acceptance, poor follow-up and linkage services, and a lack of behavior change communication strategies [18].

Sampling

Rural Women’s Social Education Centre is a grassroots Non Governmental Organization working in the research area for over 40 years. They have a strong relationship with the local community. The community health volunteers of this organization were requested to identify participants in the villages who were persons with disabilities and also had diabetes. To obtain a better understanding of people with disabilities’ challenges in diabetes self-management, we included a diverse group of people with disabilities. We developed a case study checklist to guide the flow of the interviews. We interviewed 16 people with disabilities in total – 9 women and 7 men. In terms of disability, 9 respondents were with physical locomotor disability, 2 respondents with stroke, 4 respondents with multiple disabilities (of whom 3 had visual disability), and 1 respondent was with hearing disability. We attempted to sample participants who were articulate and clear in expressing their opinions. However some of them had challenges in communication. But their experiences were unique and important and we did not want to exclude them from the study. In these cases we ensured that the primary caregiver was present during the interviews and provided clear information. We concluded the interviews based on the data saturation as the same ideas were emerging after 13 interviews and we interviewed 3 more respondents to confirm the same.

Ethical considerations

The study was reviewed and approved by the Institutional Ethics Committee of the Rural Women’s Social Education Centre (RUWSEC), an NGO working in Thirukkazhukundram, Chengalpattu, India. The study was carried out as per the National Ethical Guidelines for Biomedical and Health Research involving Human Participants proposed by the Indian Council of Medical Research in 2017. We obtained written informed consent from all participants before the interviews and provided an information sheet about the study to the participants. The interviews were conducted at the time and place of convenience of the participants to ensure their privacy. All the collected data through voice recordings and transcripts were stored in a password-protected folders.

Data collection methods

All the interviews were conducted in the local language Tamil. We used an interview guide as a checklist to guide the interviews. We prepared this checklist specifically for this study in keeping with our key research objectives and after several rounds of discussions among the researchers. This checklist is presented as Supplementary Material 1. However, we did not strictly adhere to it and permitted the free flow of the interviews. We started the interview by asking general questions like duration of diabetes and disability, place of care seeking, etc. and then proceeded to the challenges they face in diabetes self-management and various factors that affect the same. We obtained permission to audio-record the interviews and also took field notes while conducting the interviews. All the interviews were transcribed verbatim and then translated into English for ease of analysis. We didn’t provide any monetary benefits or compensation to the participants.

Data analysis

Initially VG read all the 16 transcripts and selected one of them dense in information for coding. The coding was done in Excel spreadsheet. The statements were entered in one column and in the adjacent column the corresponding code was entered. Each statement was also tagged with the identifying information of the interviewee. RT also coded the transcript independently. VG and RT discussed and reconciled any discrepancies in coding. Following this, VG coded all the remaining transcripts with the coding tree generated from the first coding exercise. The codes were then read and grouped into emerging themes. These were then elaborated and explained with corresponding verbatim quotes.

Data trustworthiness

We used the Lincoln and Guba criteria to ensure trustworthiness of the study [19]. We practiced triangulation, peer debriefing and member checking to ensure credibility. Wherever feasible both RT and VG were present during the interview and we both discussed the contents of the interview to triangulate our understanding of the interview. After each interview, we briefed our notes to the study participants to ensure that we understood and captured accurate information as provided by the participant. We maintained field notes for all the interviews as an audit trail to ensure dependability. To ensure confirmability, we maintained a reflexivity journal and referred to it constantly during analysis. Further, we achieved triangulation of our analysis by involving two of the researchers in the process.

Results

Persons with disabilities had unique challenges in navigating diabetes self-management behaviors. We present the key findings of the exploration as the unique experiences of self-management behaviors and the factors that influence the adoption and maintenance of self-management behaviors.

Unique experiences of diabetes self-management behaviors among persons with disabilities

Diet

Adopting healthy diabetic friendly diet was challenging to persons with disabilities. The key recommendations of a diabetes friendly diet is the intake of fresh fruits and vegetables. In the villages where this study was done, there was restricted access to fruits and vegetables. If they had to buy vegetables and fruits, they had to travel about 7–8 KM to the nearby town. Persons with disabilities and limited mobility found this challenging.

We don’t get vegetables at our village. I get from here on the days when I come to the hospital. Else, when I go to the bank in the nearby town, I will get vegetables at that time from there. – elderly person with locomotor disability

Moreover, people found the vegetables and fruits unaffordable. Especially persons with disabilities who had limited resources and depended on the welfare pension provided by the government found fruits and vegetables too expensive.

We are not rich to buy fruits. Whatever is there at house, we eat. – middle aged person with locomotor disability

The staple diet of the villagers is rice. Due to the high glycemic index of rice, one of the dietary recommendations given is to switch over to millets or flat bread (chappati). However, they felt that preparing these food items involved too much physical efforts, and prolonged standing for preparation, which they were unable to do.

I only have to prepare the chappati. I have no support. It is very difficult. Some days I take wheat porridge, some days wheat dosa and some days chappati. – elderly person with locomotor disability

Physical exercise

A person with diabetes is recommended to undertake at least 30 min of physical activity on at least 5 days in a week. Many persons with disabilities find it challenging to do physical exercises. Persons with locomotor disabilities find it difficult to walk. Those with sensory disabilities such as hearing or visual disabilities are unable to access public spaces due to lack of support and fear of fall and injury.

After they cut off his toes due to diabetes, he is unable to go for walking. – son of elderly person with locomotor disability

Pain worsens the ability to adopt physical activity. Many persons with disabilities experience pain in their limbs and this pain incapacitates them and prevents them from doing exercises.

My foot is paining 24 hours a day. I cannot sit with my legs down while sitting in a chair. I can only sit with my legs stretched. So I cannot do walking. – elderly person with locomotor disability

Problem is, I am not able to walk. I am not able to walk even for a small distance. I used to sit every now and then and only walk. If I stand up, there is pain from here to here (Showing from hip to knee). – middle aged person with locomotor disability

Some of these persons are highly demotivated due to their physical disabilities. This lack of motivation prevents them from doing any exercise. They don’t follow even the advice of the physiotherapist for rehabilitation.

He is also not doing any exercises whatever was taught to him. Let whatever happens, happen. He used to drive the bikes and all (before the stroke). Now he does not even walk. His relative is driving that bike. – wife of a young person with stroke

Some of the persons require physical support for moving about. They are dependent on others even for their activities of daily living. They also require support for doing any physical exercise. Due to lack of such a support, they are unable to do exercises.

He is not even able to do simple work. He can’t even fetch water and even we bring his slippers if he is going out. He is not even able to wash himself after going to toilet. As we are not able to support him, he is not doing any exercises. – spouse of an elderly person with stroke

Medicines

Regular intake of medicines is essential for diabetes control. Persons with disabilities face several challenges in procuring medicines and taking them regularly. The government of Tamil Nadu has the flagship non-communicable disease program Makkalai Thedi Maruthuvam (MTM) which is briefly described in the section on study setting. People in these villages complained of irregular supply of medicines through the MTM.

They were providing medicines at home itself for 2 months from the PHC through MTM. But now and all nothing like that. They don’t even come these days. I don’t know why. – elderly person with locomotor disability

Then, recently they came to our home and gave the medicines. They didn’t give for the last week. Before that and all I used to receive regularly. They were giving it for 5 months and now they stopped this month. When asked, they said medicines were unavailable. – middle aged person with locomotor disability

As the medicines in the public health system were irregular, some of these persons had to get their medicines from the local pharmacies and private clinics by paying out of pocket. They found this unaffordable. Whenever they had money they bought the medicines and took them, on other months they would miss taking the medicines.

I have some issues with money. One month I am able to buy and one month I am unable to buy. – middle aged person with locomotor disability

Many persons with disabilities who were interviewed had multiple health problems and so were prescribed multiple medications. This led to confusion. So, some of these persons were irregular on medications.

Currently am taking only the medicines given from the hospital after amputation. I am confused because of too many prescriptions and too many medicines. So, I stopped taking medicines. – a middle aged person who had amputation of his feet

The persons with disabilities had negative perceptions regarding the medicines. They felt that the medicines were not helping them. Since they did not feel better on these medicines, they were reluctant to take them and stopped them.

I am having diabetes for the last 8 years. Since my legs and hands became weak, I stopped taking medicines after this stroke. Anyways they don’t help – middle aged person with stroke

Moreover, persons with disabilities whose symptoms were predominantly from the disability rather than the diabetes, prioritized the medicines for the disability and stopped the diabetic medications.

I stopped taking medicines after I got this stroke. Stroke medicines are more important than diabetes medicines – middle aged person with stroke

Monitoring

The persons who were interviewed were irregular in monitoring their blood sugar levels. The main reason for this was inaccessibility of the laboratory facilities.

We should go on an empty stomach early in the morning. There is one bus at 06:30AM. I get that bus and come for blood test. They will ask to come again after 2 hours after eating. One check-up before eating and one check-up after eating. I am not able to do that – elderly person with locomotor disability

It’s been six months since I have taken my blood sugar test. I am unable to go and get it done. – elderly person with stroke

Factors influencing the self-management behaviors of persons with disabilities

Poor physical quality of life of persons with disabilities

Persons with disabilities have poor physical quality of life. They are dependent on others for even their activities of daily living. This dependence removes the ability to self-manage their diabetes. Moreover, many of the persons with disabilities have pain due to the disabilities. This pain worsens the quality of life and demotivates them from adopting any self-management practices.

There is difficulty in doing the routine work like sweeping, cleaning the house, and cooking also. I get giddiness and if I get, I stop the work then and there and sit to take some rest. – middle aged person with locomotor disability

I have swelling in my legs and severe back pain. I cannot stand up on my own. I can get up only with the help of others. This swelling in my leg is very painful. If I sit in a chair, my legs get swollen and if I sit down on the floor, nobody is there to lift me while getting up – elderly person with locomotor disability

This problem of disability has been there since the age of one and a half years. I don’t have strength in this leg and after getting sugar (diabetes), I have foot pain and various ailments. – middle aged person with locomotor disability.

Persons who have multiple disabilities have a worse quality of life. This further worsens their self-management practices.

I cannot walk to the hospital to go for check ups. Now my vision is also blurred. So this completely prevents me from going to hospital or doing tests. – middle aged person with locomotor disability

Poor mental quality of life of persons with disabilities

Persons with disabilities have poor mental health. They experience anger, frustration, depression, anxiety and this prevents them from engaging with self-management behaviors.

He gets angry even now if we are unable to understand what he says sometimes. He is aware of who is who and what is what. But unable to pronounce it as a sentence. He is also not using his hands much. They say that he is not having strength – caregiver of a young person with stroke

Many persons with disability with little support from the family, society or the government have resigned to a poor quality of life and are demotivated to adopt any life style modification. Some of them have a nihilistic attitude to life and await their early death.

My husband was suffering only a day before his death and went (died). Now, I am sitting like this. It’s a torture for me. This bent hip is troubling me. – elderly person with locomotor disability

Some of the persons adopted unhealthy coping styles for their depression and anxiety including binge eating, smoking and alcohol. This adversely affected their diabetes self-management.

He kept on drinking without even eating. He used to simply lie down in the bed (pointing inside her house). He used to pass urine and motion (stools) in the bed only. It was like this for almost a month. – wife of a young person with stroke

There they diagnosed him with sugar (diabetes) and advised him not to eat sweets. But he eats sweets because of lack of control. – wife of a young person with stroke

Poor mobility of persons with disabilities

Lack of mobility was the major limitation of most persons with disabilities. The lack of mobility adversely affected their ability to adopt self-management behaviors. They were unable to use the public transport independently. The bus stops were located far away from their homes and from health facilities. Often, they had to switch multiple modes of transport before reaching a health facility. They required support of strangers in the public transport to help them board the bus and disembark. Trains were also inaccessible due to the staircase that they had to climb in all the railway stations.

“I need support of others to climb in and out of the bus and others are helping me to do so. Once while I was climbing, it skipped and people who were behind me only held me. Else, my head would have shattered by hitting in the platform. They saved me.” – elderly person with locomotor disability.

“We need to go 2 kilometers from my place to board the bus. I walk those 2 kilometers with frequent stops in-between to board the bus. I will not be able to walk continuously because of the pain.” – elderly person with locomotor disability.

Many of the persons with disabilities frequently switched their health facilities. This was because when they had a mode of transport and support, they could go to the district hospital which was far away. But on other days when such support was unavailable, they had to switch to local health facilities. This hampered their continuity of care.

“He asked me to get the medicines from there only and it costed Rs. 3000/-. I asked him to write the medicines in the Government as I was not able to come to the clinic. First, I used to go and get the medicines from the tertiary care hospital 40 km away. Since I was not able to travel there everytime, they wrote the medicines to get it from the secondary level hospital nearby.” – elderly person with locomotor disability.

Sociocultural factors

Several socio-cultural factors influenced the adoption of self-management practices. One common cultural belief was about black magic and its influence on causing disability.

They had done some black magic to me. My neighbors have done it because they are unable to digest my growth and my sons’ growth. They did the black magic and kept something underneath the main entrance of my home. – middle aged person with stroke

The government social welfare schemes provide disability pensions and disability aids such as crutches and wheelchairs free of cost for persons with disabilities. These welfare measures have the potential to support persons with diabetes in adopting self-management behaviors. However, several social factors influenced access to these benefits. The officials in charge of distributing these aids and benefits were discriminatory. They practiced ageism. They refused these aids to those who were elderly and prioritized these aids to younger persons.

I am old. The people at the rehabilitation center was asking whether I go to work and when I said I don’t, they denied me the wheelchair. Having a wheelchair will be of great help for me. – elderly person with locomotor disability

Those who received disability pension felt that the amount was insufficient to manage a life with diabetes. Persons with diabetes had extra expenditures for special diet, medications and blood tests and the pension was not sufficient to meet these excess expenditures.

I am receiving an old age pension but I receive only 900 rupees as the remaining amount goes for the transportation cost. But what can I do with that little money? A milk packet itself costs 15 rupees. I make tea sometimes. – elderly person with locomotor disability

The intersectionality of gender with disability worsens the self-management behaviours among women. Women bear the burden of household work despite their disability. They also do not receive much family support. Able bodied women with diabetes themselves have challenges in taking medicines, practicing healthy diet and exercises and the issues are worse in women with disabilities.

It’s very difficult being a woman. I used to cry sometimes while eating food. I cannot stand for long hours and cook, it will be painful and I will feel giddiness, and it is very difficult and also my daughters are married and went to other home. There is nobody to help me in my household work. – a middle aged person with locomotor disability

Even when I am very sick only neighbours will accompany me to the hospital. My husband will never come and help. – middle aged person with locomotor disability

Poor quality of health care

The health system is often of poor quality and excludes persons with disabilities. This prevents persons with disabilities from receiving the appropriate care that they require. It also deprives them of opportunities to receive advice and counseling on self management.

Good diabetes treatment is available only in the tertiary care centre which is about 40 km away. It is extremely difficult for someone like me to go there to receive treatment. – elderly person with locomotor disability

The health care providers are insensitive and rude sometimes. This discourages the persons with disabilities from accessing treatment and care for diabetes.

Sometimes, my legs and hands will be paining and it will be numb. We go to the government hospital. That doctor is a big doctor who sees me there. When we went there, he said “Go and see in private. They will treat you well. We don’t have treatment for you here.” (Mimicking the rude tone which she faced that time). My daughter asked him why he is not treating me and instead asking me to go a private doctor. He refused to treat us. Then we had to go to a private doctor and pay 1500 rupees for the treatment. – elderly person with locomotor disability

The health care providers did not take extra time to communicate with persons with sensory disabilities. They did not spend time explaining the disease and treatment to persons with hearing or visual disabilities. The persons with disabilities felt neglected and ignored.

None of them advised me on what to do for diabetes like diet control or exercise. They said only to take the medicines at the PHC. – persons with amputation of feet

There is a separate cell in the government hospital. They collect the notebook of all the patients in which their medications are written. They put a seal, and issue the medicines. That’s all they do. Doctors won’t see the patients. – elderly person who is hard of hearing

Discussion

Persons with disabilities have several challenges navigating their normal life. When diabetes comes into the picture, the challenges become complicated as the disease is exacting in its requirement to adopt several self-management practices. The key self-management practices include eating a healthy diet, doing regular physical exercises, taking medicines regularly, monitoring their blood sugars periodically and other specific self-care practices such as care of the feet and teeth [20]. This study explored the lived experiences of persons with disabilities in adopting these self-management practices. Persons with disabilities living in resource-limited settings as in this study, found it challenging to access healthy foods such as fruits and vegetables, often could not afford them and found it challenging to prepare dishes that were diabetes-friendly. Those with locomotor and sensory disabilities had restricted mobility, which in turn made it challenging to adopt physical exercises. Persons with disabilities found it challenging to access health facilities and laboratories. Many of them received medicines from the Makkalai Thedi Maruthuvam scheme of the government. But the supply of drugs was irregular. Polypharmacy was present almost in all these persons and it created a lot of confusion and led to discontinuing the medications. Several factors influenced the adoption and maintenance of self-management behaviors. Many of them had pain as a routine part of their life, which made their disability experience worse. The disability complicated by the pain worsened their mental health. This demotivated them from adopting self-management behaviors. Many of these persons adopted unhealthy coping styles including smoking, alcohol and binge eating, which worsened their diabetes. They resigned to a state of poor health. Many persons with disabilities were elders and the interaction between their older age and disability made it challenging to access disability aid and benefits. Without these support, they could not adopt self-management behaviors. Women with disabilities found it even more challenging to negotiate health behaviors because of the gender norms and roles. Poor quality of care in the public and private health facilities, and insensitivity and disrespect by the health care providers further demotivated them from adopting healthy behaviors. In the following paragraphs, we will discuss the various aspects of diabetes self-management among persons with disabilities.

Challenges in adopting healthy diet

Diabetes friendly diets are difficult to adopt to a large part of the rural populations, especially those in resource limited settings. Consumption of fruits and vegetables comprises a major part of healthy eating in patients with diabetes. The consumption of fruits and vegetables in India, especially rural India is at a worrisome low level [21]. The main reason for low consumption of fruits and vegetables in India are low household income and high price of the fruits and vegetables. There is no government policy in providing fruits and vegetables through the public distribution system. This greatly compromises their accessibility to the urban and rural poor. Studies have shown that people with disabilities are vulnerable to food and nutrition insecurity [22]. There is also evidence that disability and poverty operate cyclically. Disability worsens economic participation, which worsens poverty, and this worsens the disability due to lack of access to treatments, support, rehabilitation and care [23]. Persons with disability have greater vulnerability due to the dual effect of disability and poverty. This further worsens the ability to adopt healthy diets and worsens food and nutrition security. This was seen clearly in the lived experiences of these persons with disabilities.

Challenges in adopting physical exercises

Persons with various forms of disabilities find it challenging to adopt any physical activities. While maintain a physically active life style has been shown to have health benefits for those with disabilities, there are very little systematic guidelines and models for physical activity among persons with disabilities [24]. One of the main self-management behaviors in diabetes is leading a physically active life. But persons with locomotor disabilities are often dependent on others for even their daily activities. They lack access to physiotherapy and rehabilitation and so find it challenging to adopt any kind of physical activity. Apart from their own mobility restrictions, a large part of the challenge in leading a physically active life comes from environmental factors [6]. Uneven roads, lack of proper lighting, absence of walkways in roads worsen the ability to move around. Disability aids and supports such as walkers, and railing supports may encourage persons with disabilities to be more physically active. But many persons with disabilities in the study area did not have access to disability welfare supports and aids. This further complicates the ability to adopt physical activities.

Challenges in accessing health facilities and receiving health care

Good self-management of diabetes requires regular visits to health facilities, counseling on adoption of healthy behaviors, access to laboratory facilities for periodic testing and medical consultations. Persons with disabilities have poor access to health facilities. Not only this, they also face insensitivity, rudeness and discrimination in the health facilities [17]. This was also observed in this study. The poor access to the health facilities and the ill treatment in the facilities made it challenging for them to access them, thus worsening diabetes self-management practices.

Poor quality of life worsens self-management

Adopting healthy self-management behaviors requires a lot of self-motivation and will power. Such self-motivation comes from having something to look forward to in life. Persons with disabilities remain a neglected part of the society. In resource limited settings, the society tends to prioritize able bodied individuals who contribute to the economy thus neglecting persons with disabilities [25]. When the normal life with disability has a very poor quality, it leaves nothing to look forward to. Many persons with disability have resigned to a life of poor mobility and poor quality of life. This demotivates them from adopting health life styles. Therefore without addressing the larger issues of quality of life of persons with disabilities, it cannot be expected to promote healthy self-management behaviors among them.

Poor mental health and poor self-management behaviors

Persons with depression have poor self-care. Disability increases the risk of depression [26]. Diabetes itself increases the risk of depression [27]. Those who experience depression and anxiety due to the complex interplay of diabetes and disabilities therefore have poor self-management behaviors. Though we did not perform a clinical assessment for depression, the narratives of many of the persons interviewed in the study indicated poor mental health, a resignation to their fate of poor quality of life, and anticipation of death. This is like to have contributed to the poor self-management practices that were observed in the study.

Intersectionality of age and gender in influencing self-management

There were significant gender differences in diabetes self-management reported in previous studies. Lack of finances, embarrassment to undertake self-care, negative outlook to life, and perceived lack of disease control prevented women from adopting health life styles [28]. Ageing makes diabetes self-management complicated. With ageing physical and functional disabilities increase. With increasing disabilities, there is a compromise of independence. This makes self-management of diabetes complicated among the elderly [29]. The intersectionality of gender and aging makes diabetes self-management very difficult.

Strengths and weaknesses of the study

The strength of this qualitative exploration is that to our best knowledge it is the first community-based exploration of the lived experience of persons with disabilities in negotiating diabetes self-management practices. Interviewing the participants in their homes with adequate privacy ensured that the responses were honest, free, and uninfluenced by the presence of health care providers. Although a 360 degree exploration using case study methodology was attempted, the exploration was limited because of the poor health condition of some of the respondents. This cut short the duration of some of the interviews. In some cases, the respondents could not communicate adequately due to sensory disabilities in hearing and speaking. In these cases the interviews were largely given by the primary care giver. Though this could see seen as a weakness, this gave an opportunity to bring to light the silent suffering of these persons with sensory disabilities through their care giver’s perspective.

Implications and recommendations

Persons with disabilities have great challenges in negotiating self-management behaviors. Currently the health system does not address the special needs of these persons for their diabetes care. Findings of this study indicate the need to incorporate disability specific guidelines, policies and implementation plans in care for diabetes. At the health system level, all public health facilities must be made disability accessible. Sensitization of health care providers at the health facilities to the needs of persons with disabilities will greatly reduce the stigma, discrimination, and insensitivity towards them. The public health policies and programs for non communicable disease prevention must be disability inclusive. Specific guidelines for physical activity for persons with locomotor, visual and intellectual disabilities will go a long way in making diabetes self management guidelines equitable. At the societal level, accessible public transport will greatly improve mobility of persons with disabilities, thus leading to better access to resources, especially health care resources. While the government is providing disability pensions and disability aids to those who need it, this alone cannot be sufficient. Overall inclusion of persons with disability into the mainstream society should happen with the active implementation of inclusion policies. This will support the adoption and maintenance of diabetes self-management behaviors. At the individual level, persons with disabilities and diabetes must require special attention in the form of mental health screening and counseling services. This will further improve diabetes self-management.

Conclusions

This study documents the challenges faced by persons with disabilities in practicing diabetes self management. Age, gender, poverty, poor mobility, poor mental health and poor quality of life worsen the overall adoption of diabetes self-management practices among persons with disabilities. There is a need for public health policy and planning that is inclusive of persons with disabilities to make access to diabetes care universal.