INTRODUCTION
Patient participation and engagement in healthcare is a major contributing factor to optimum disease control, particularly in chronic diseases such as diabetes [
1]. Diabetes is considered a pandemic issue [
2] as the number of cases is rising significantly worldwide [
3] and is the leading cause of cardiovascular death in South East Asian countries including Malaysia [
4]. Patients with diabetes are not only required to comply with the medications but have to fully engage in many aspects of self-care [
1]. The patients’ readiness to self-manage should be a cause of concern as managing diabetes requires the integration of a healthy lifestyle and adjustment to daily routines [
5-
7]. There has been a growing interest among scholars to assess the extent to which patients are ready to engage in their care. The emergence of several tools such as Patient Activation Measure and the Health Behavior and Stages of Change Questionnaire have made it possible for clinicians to differentiate patients who are ready and not ready to actively engage in healthcare [
8,
9].
This issue is pertinent as current evidence points toward a link between patients’ engagement and improvement in clinical outcomes, particularly glycemic control [
10,
11]. On the contrary, patients who were not engaged in care were found to be passive and not ready to change [
5,
8]. Several factors contributed toward the patient’s engagement, including the belief system, education level, locus of control, social support, psychological distress, and self-efficacy [
7,
12-
15]. These findings reported from previous work sparked curiosity on how the actual process of change happened as it was considered relevant to clinical practice [
14]. Undoubtedly, the critical element underneath these processes of behavioral change is motivation, which moves a patient from being passive to proactive in managing diabetes [
16]. However, details about the aspects of motivation to change among patients with diabetes is still scarce. Little is known about how patients’ intention to engage in diabetes care originates, as having the purpose denotes one’s readiness to accept the responsibility and acts as a starting point in the patients’ journey as health managers.
Therefore, efforts should be undertaken to understand this starting point, i.e., how patients reach the stage of having the intention to engage in diabetes care. One of the useful approaches, in this regard, is an exploratory method which allows a more in-depth understanding of people’s experience in their context as well as cultures [
17]. This qualitative study was performed to understand how patients started to have the intention to engage in diabetes care. The understanding of these aspects could help healthcare providers develop an effective intervention strategy for patients who are passive or not ready to participate in managing diabetes.
DISCUSSION
The cornerstone of diabetes management is the patients’ commitment to self-manage but it could only be done when patients are ready and have the intention to do so [
1,
5]. In the process of patients accepting the responsibility, healthcare providers should be aware that patients undergo certain phases that are somewhat distinct, depending on their perceived situations. During the earlier stage of diagnosis, some of the study participants had difficulty engaging in their care as they were too overwhelmed with their emotions. Other patients with diabetes also experienced the same turmoil as they felt sad, frustrated, disappointed, resentment, and were in denial [
5,
7,
14,
19,
20]. It is also worthwhile to note that the intensity of emotional distress differed among the participants with no symptoms and those with complications. In a latter situation, patients tended to be shocked and responded negatively, suggesting a longer time was needed to accept the diagnosis and responsibility [
21].
The psychological reactions experienced by them were owing to their perception of the consequences posed by the illness [
22], reflecting the feeling of fear and at threat after having been diagnosed with diabetes. If they perceived the danger as strong, it was likely that emotional distress will increase [
22]. Our results echoed the finding from previous exploratory studies in which some patients believed that having diabetes means their longevity, social role, and future could be compromised [
19,
20]. The views could also be attributed to seeing their friend or family members who have diabetes, as nearly one in five adults in Malaysia is affected by this disease with an alarmingly high rate of mortality and morbidities [
4]. As emotions and perceptions largely influence a person’s attitude toward a behavior [
23], healthcare providers should foremost tackle these aspects first [
15] as the process of accepting their role could take longer if their mental health is being affected [
21]. The findings from current research also suggest that greater emotional support is needed for those who are diagnosed late or when complications have already ensued.
On the other hand, not all patients were emotionally affected and some readily accepted the diagnosis [
19,
20], opening a more natural path for healthcare providers to educate them on diabetes care. In this study, the patients’ acceptance was partly due to their religious beliefs and prior knowledge of diabetes. Even though religiosity has been recognized as a positive coping mechanism in patients with diabetes [
24], it remains a challenge for us as some patients considered this as an excuse not to engage in healthcare [
12,
25]. They were adamant that the outcome of diabetes is already fated and human beings have no power to change it [
12,
25]. Another crucial factor in determining patients’ readiness for engagement is by having a deep understanding of the disease [
5]. The adequacy of knowledge also helped in accepting the illness as some patients were able to reflect on their past actions as a cause of diabetes [
20,
25]. Although education is not sufficient to promote behavioral change [
7], it influences a person’s beliefs and attitudes, which subsequently affect the intention to engage in a behavior. Nevertheless, at the point of diagnosis, many patients did not have an in-depth understanding of diabetes, resulting in many missed perceptions of the disease [
5,
12,
20].
While doctors are regarded as an essential source of health information [
14], some participants felt that the information was inadequate [
5,
20,
25]. Our findings replicated a parallel observation in previous research in which patients turned to social media, the Internet, friends, and family members for more information [
20]. It is probably due to the paternalistic attitude by some of the healthcare providers, causing a didactic way of learning about diabetes and as a result, the knowledge given is not tailored to the patients’ needs [
14]. Providing accurate information to patients at the correct time is equally important. For instance, for those who are diagnosed early through the screening test, the diabetic educators should emphasize that patients could remain asymptomatic, but that the target organ damage can set in during this silent period and of the likelihood of avoiding complications if the disease is controlled early [
1]. As opposed to patients who already have organ damage, clinicians should inform them that the efforts undertaken meant reducing the impairment and prevention of disease progression [
1].
However, even when some of our participants knew about diabetes, they were still contemplating whether to engage in their care. The inability to take on the task is probably because of the lack of confidence or feeling of denial [
7,
14,
20]. Self-efficacy plays a pivotal role in the process of patients engagement [
25]. Previous researchers claimed that people with an internalist attitude had a higher level of self-efficacy and the opinion seems to agree with some of our participants [
7,
26]. Nonetheless, we observed that self-efficacy could be enhanced in several participants with an external locus of control. Individuals with external control tend to place other people’s opinions above theirs and this could be the reason how some of our participants’ negative perceptions toward diabetes changed. The encouraging words from their closed ones had motivated them and gradually instilled some confidence to take up their role in diabetes care. Bandura [
27] also explained that social persuasion could heighten a person’s perceived ability to making a change. Considering this phase as the most challenging, healthcare providers should seek assistance from the patients’ closed social network if the patients are still at a contemplating stage.
Our study revealed that some participants were contemplating to take part in their care only after witnessing other people’s loss. As Malaysia is viewed as a collectivist culture, people in this society generally place significance in others; hence, it is likely for our participants to feel deeply affected when seeing their family members or peers suffer from diabetes complications. Their grief brought a significant meaning and had induced fear to the participants, stimulating a cognitive evaluation of their conditions. The visual images of the relatives’ or peers’ poor conditions also signaled a warning for them to take charge of their health—a phenomenon which equally happened in others with diabetes [
25]. Fear is the emotional representation of a threat and participants were fast to respond when the threat was perceived as severe as well as jeopardizing their life. Previous research had highlighted the role of fear in motivating people for change [
7,
24,
25], but too much fear can lead to an abandonment of their responsibility [
28].
One more reason for the participants’ unreadiness to engage was because they probably were in the stage of ambivalence and unable to decide on whether to engage in managing diabetes, even when they knew of the negative outcome. This hesitancy was also stated in another study [
19] and the participants’ ambivalence was resolved after seeing the unfortunate incident of their family members. The event also prompted them to reflect on what was important to them, and they made a decision based on their values. In general, individuals position their values based on their beliefs, life priority, and culture [
29]. A collectivist society such as that of Malaysia, by and large, portrayed characteristics of inter-dependence, self-sacrificing, and putting the families’ needs ahead of themselves; these attitudes were evident among our participants when they described their life values.
Knowing an individual’s value is important as it acts as a goal and is the foundation for change [
29]. Our study participants realized that there is an opportunity for them to achieve their goals by engaging in diabetes care. They would be able to maintain their family and marital ties, fulfilling their role in society, being compassionate to others by not burdening their loved ones. Having to accomplish all these were also the patients’ meaning of having a good quality of life when living with diabetes [
19,
20]. Recognizing this crucial information, the healthcare providers should assist patients in re-constructing their thoughts by having the correct perspectives of change, particularly the value of engaging in diabetes care. The aim is to facilitate patients in overcoming their resistance and moving them toward their goal.
1. Limitations and Strengths
The current study is limited in terms of its’ study setting. The research was done in one urban primary care clinic; therefore, the findings could not be generalized or represent the views from patients of the other setting. Nevertheless, the results gave an insight for the healthcare providers to understand the process of change, i.e., how a patient moved from not wanting to change to having the intention.
Another limitation is the study has excluded patients who could not speak English or Malay, and therefore, their reasons and process of change were not captured. As Malaysia is a multicultural and multilingual society, there is a diversity in people’s beliefs and values. However, the sampling strategies taken by the research team have incorporated those from various backgrounds, including ethnic and age groups as well as educational levels. The data analysis was done by the research team members who were from multiple disciplines including primary care, public health, psychology, and psychiatry. The different disciplines involved provides an advantage as the research topic (the process of change) is considered an interdisciplinary issue and helps to cross-validate the research findings.
2. Conclusion and Relevance to Clinical Practice
The findings from our study highlighted several essential points in the process of accepting responsibility in managing diabetes. At the initial stage, patients responded differently to the diagnosis based on their perceptions, cultural beliefs, and knowledge of diabetes. Some felt threatened up to the point of having emotional distress where others chose to minimize the condition and were not bothered. Therefore, knowing the patients’ viewpoint of diabetes is the first step for healthcare providers in helping patients to engage in their care, aiming toward modifying any negative perceptions and offering emotional support when needed.
Our results have led to the conclusion that having the right interpretation of diabetes and perceived efficacy are the salient features for having the intention to engage. Patients needed to believe in their ability to manage diabetes and that the treatment would improve the outcome. Social support could contribute to the enhancement of patients’ efficacy levels—especially when they feel emotionally overwhelmed— and also helped them to shift their focus toward the role of health managers. However, in patients who initially were not concerned, their perceived efficacies were intensified when fear sets in, indicating a feeling at risk, which in turn, triggered a decision-making process and becoming ready to take actions. Hence, the healthcare team should not dismiss the patients’ feelings of fear but instead, take patients expressing themselves as an opportunity to stimulate the thinking process and try to link life priorities as well as goals.
The other main conclusion is that there is a need for a different strategy for patients who are not ready to engage in healthcare in comparison to those who are already in the active phase. The intervention should be person-centered with a motivational approach. We also advocate further studies to assess whether “inducing fear” is a useful and practical approach in the intervention program for patients with diabetes, specifically for those who are passive and not ready to self-manage.