Currently, it is known that the vital principle in self‑management is participation and accepting responsibility by the patient and family members, So that many disease complications can be controlled by correctly doing practices related to self-care (29). Different factors including biological, psychological, economic, social‑cultural factors and inadequate health care systems affect directly and indirectly self‑care behaviors of patients with diabetes (30).
This study explored patients, HCPs and care givers’ viewpoints on the patients’ performance of diabetes self-care activities in which varied barriers were recognized and conceptualized into the TPB constructs of attitudes/behavioral beliefs, subjective norms and perceived behavioral control in addition to barriers related to educational and psychological issues. The TPB served as a framework to understand the reasons why patients do not adhere to their recommended diabetic self‐care behaviors. Accordingly, we found five major themes of educational, psychological, behavioral beliefs, social norms, and behavioral control barriers.
In this study, the theme “educational barrier” was divided into three subthemes. One of the subthemes is “inadequate knowledge and skills of DMSM”. Consistent with this study, Previous studies showed that insufficient health literacy affects negatively patients’ self-care practices (22, 31–34). Another subtheme of educational barrier reported in this study was “low perception and susceptibility of the illness”. Similarly it is also reported in other studies as patients had low perceived seriousness, sensitivity and inadequate signs to action (22, 31).
The other subtheme was “Insufficient health information”. It has been advocated that people with diabetes should receive well-structured self-management education and support in an ongoing and consistent manner (35), but as reported in this study face-to-face diabetes education between patients and HCPs on an ongoing basis was very low due to limited human, time shortage and busy work schedule.
The theme “psychological barriers” included two subthemes. The subthemes were “emotional response and negative emotions”. In our study it has been reported that patients experiencing a variety of emotional responses to a diagnosis of T2DM such as feel sad, stressed, anxiety, denial, deep concern, frustration and anger. Hence, these feelings also are influenced by depression and other negative emotions such as embracement, lack of hope, lack of motivation, lack of cooperation, lack of confidence, fatigue and interpersonal conflict.
Consistently, in qualitative studies, it was underlined that the patients show similar emotional responses and negative emotions to diabetes diagnosis and self-care management behaviors (22, 23, 33, 36). Similarly in a mixed study participants reported emotional reactions such as denial of the diagnosis of diabetes, anxiety, fear, and depression (37). Patients who develop denial on their diagnoses of diabetes may feel “deceived” by their own bodies and lose confidence, motivation and hope in their abilities to perform self-care behaviors. This fear and inability to accept diabetes is significant, commonly resulting in clients ignoring health care providers’ suggestions regarding how to successfully manage T2DM (36).
The theme “Attitude/ behavioral belief” had three subthemes. One subtheme was “difficult changing old habit”. Consistent with our study, there have been studies indicating that patients with diabetes have difficulty in changing established habits mainly their eating behavior (24, 25, 34). The patients’ inability to change their eating habits could be occurred due to fail to follow HCPs advice, unable to prepare separate meals and irregular meal time.
Another subtheme of challenges to lifestyle change was “misconceptions”. In this study misconceptions about causes and treatment of diabetes were mentioned by the participants. These misconceptions affect patients’ self-care behaviors such as diet in which patients’ avoided totally carbohydrate‐rich foods as they believe diabetes was caused by excessive sugar intake. Medication adherence also affected as patients and their family wrongly perceived that diabetes could cure through herbal medicine or holly water and in line to our study previous studies have shown that patients had misconception about risk factor and management of diabetes (24, 38–43).
The third subtheme was “intentional non adherence”. Intentional non adherence related to patients fail to follow any advice given from HCPs to manage their disease condition was reported in our study. This may be due to a number of factors including feel lazy, being teenager/youngster, medication side effect, denial or non-acceptance of being diagnosed with diabetes or the seriousness of the condition, feeling of wellness, worrying about the continuous intake of drugs, misconceptions and lack of trust in the effectiveness of the recommended treatment (24, 44, 45).
The theme “subjective norms/ normative belief” had three subthemes. One subtheme was “inadequate support”. Some participants in this study, responded to lack of family support, community and group support and even family pressure counter to self-care which is more problematic to patients who are abandoned by family (live alone). In line to our study, there have been studies indicating that patients with poor social support had problem in performing DMSM as recommended (24, 25, 31, 33, 46).
Other subthemes were “peer influence and cultural belief”. In qualitative studies, patients were found to experience not adhered to healthy diet recommendations when they stayed with people without dietary restrictions (47) and the participants suggested group meetings with other diabetic patients in which they could exchange their experiences might be helpful (33). Those findings are consistent with the current study. It is known that there are numerous cultural beliefs on the risk factors, progression, and management of diabetes that adversely affect with DMSM. In contrary to our findings, previous studies have reported patients believed that diabetes can be caused by a panic situation, and medication is the reason for complications, not diabetes itself (25, 48, 49).
The theme “perceived behavioral control” had four subthemes. One subtheme was “individual related factors”. In this study participants were reported that comorbid condition, advanced age, body weakness, body pain and busy work schedule affect their self-care behavior performance. Consistent to this, in a qualitative study it has been reported that some patients were unable to exercise & follow healthy diet due to the presence of other chronic conditions, old age and busy work schedule (24).
Moreover, finding of this study indicated that too restrictive nature of diet recommendations and financial problem had negative influence on their adherence to self-care behaviors. Similarly reports of studies showed that participants raised concerns about the cost of DM, due to having to pay for medications, equipment and materials for blood glucose self-monitoring in addition to high cost of healthy diet such as fruits, vegetables and low fat foods (23, 24, 32–34, 50) and some patients felt that the limited variety of foods for them to choose based on HCPs’ recommendations being restrictive (24).
Another subtheme was “lack of resources”. Qualitative studies have been reported that lack of access to resources such as medicine, glucometer, diabetes education material etc. interfered with optimal diabetes management. Specifically, lack of access to healthy food, medications, shortage of place to exercise and supplies, such as glucometer with its strips was also expressed by adults with T2D and providers as a challenge to self-care management (24, 25) which is consistent with our findings.
“Health care provider related factors” was another subtheme. In our study HCPs were mentioned that high work load, job demand, long & intense working day, staff shortage and high staff rotation & turnover create difficult to build rapport with their patient and problem to provide proper diabetes care. Consistently, finding of a qualitative study showed that HCPs had long and intense working days, high workload and staff shortage due to a high turnover rate forced HCPs to provide medication refill only and standard diabetes care service was not provided to all patients (31).
In line to our study, finding of other studies indicated that HCPs had brief office visits, limited specialists, rapid turnover of specialists, and shortages of essential health care providers complicate the problem (36), lack of personnel to complete tasks (e.g. registered nurses), lack of time to meet the needs of patients, inconsistent supplies of medications, staff insensitivity to their illnesses (25), Several participants reported receiving inadequate information, mixed information and even no information about DM from their health care providers, due in part, to the latter’s busy practice (50).
The final subtheme of perceived behavioral control barrier was “inadequate health system”. In this study participants did mention that they had lack of local or community based services, transportation problem, poor appointment & referral system, limited range of services and unavailability of some lab test e.g. HgbA1C test. In line to our study, reports from other studies showed that patients complained that there are no local services that they identified as their ‘own’ and making long trips to receive services (33), patients from rural area encounter geographic challenges in accessing health care and require traveling long distance with transportation problem (36).
However, other studies revealed that doctors’ disagreement on DM diagnosis further heightened patients’ feeling of vulnerability (50), some of the participants express mistrust of health care providers’ advice, complained about lack of delivery of culturally congruent services and consistently mentioned lack of education by physicians about diabetes and lack of time spent with clients by physicians (33).
Limitation of the study
The study has some limitations. The study was the viewpoints of those who attend their follow-up care in the selected hospitals; therefore, our findings may not be transferable to patients who do not seek care in the health facilities. In addition there might social desirability bias due to some participants might have replied with statements they believed were consistent with their social standards, selection bias and problem related to transition from local language in to English.