1PAPRSB Institute of Health Sciences, Universiti Brunei Darussalam, Brunei Darussalam
2Department of Nursing and Midwifery, School of Health Sciences, Politeknik Brunei, Brunei Darussalam
3Ministry of Health, Brunei Darussalam
1PAPRSB Institute of Health Sciences, Universiti Brunei Darussalam, Jalan Tungku Link Gadong, Brunei Darussalam
*Corresponding Author’s Email: yusrita.zolkefli@ubd.edu.bn
Keywords: Diabetes Mellitus; Patients; Responsibility; Self-Management; Brunei
Patients have responsibilities and obligations to themselves, healthcare professionals and society both as patients and as citizens (Kangasniemi et al., 2012). Patients' responsibilities include self-care, seeking medical advice, and adhering to instructions (Miracle, 2011). Lifestyle changes play a critical role in preventing or delaying the development of diabetes mellitus, lowering its prevalence by 28%–59% (Walker et al., 2010). A Chinese study found that living a healthy lifestyle reduces the risk of diabetes by a significant amount (Lv et al., 2017).
Patients' responsibility is an essential but often overlooked aspect of nursing ethics (Kangasniemi et al., 2012). Patients' rights have always been crucial in modern society, but they are still commonly denied their responsibilities. Identifying patients' moral responsibilities may help them to become more aware of the risks to their health and well-being. The concept of patient responsibilities, on the other hand, can provide more insight into systems and practices, assisting patients and healthcare professionals in understanding and taking a concerted approach (Kangasniemi et al., 2012; Hirjaba et al., 2015). Patients' responsibility is closely related to nursing practice that concerns rights and is redefined from patients' perspectives and delivers the best purpose of care. Nursing ethics has been widely interpreted as a set of rights and responsibilities allocated to patients by healthcare professionals. Despite the importance and significance of this position, patients' responsibilities and nurses' rights continue to call it into question (Kangasniemi, Viitalähde & Porkka, 2010). It was observed that the patient-nurse relationship is crucial throughout the patient's care. The primary support conveyed by nurses in patient care is said to be a sense of caring concern for the patient. Furthermore, patients' responsibilities were considered to impact healthcare professionals' commitment and dedication to their jobs (Hirjaba et al., 2015).
Purposive sampling was used in this descriptive qualitative study, and all nurses from RIPAS Hospital's medical wards were identified and approached face-to-face through a gatekeeper. Nurses must have more than one year of working in hospital medical wards and providing direct care to eligible diabetic patients. The study did not include nurse managers, student nurses, or allied health professionals. A total of 18 nurses were given a written participant recruitment sheet with information about the study during a series of recruitment briefings, and nine of them agreed to participate. The nurses are between the ages of 23 and 45 years old and included two men and seven women who had worked as nurses for 1 to 21 years.
To evaluate patient responsibility perceptions, medical nurses at RIPAS Hospital were invited to a structured vignette interview. The vignette is designed to elicit the nurses' understanding of patient responsibility attached in each vignette. The nurses were asked, "What do you think is the patient's responsibility in a situation like this?" and "Why would you think that the patient needs to realise such responsibility? The vignette was developed and guided by the literature view and reviewed by all of the researchers. The vignettes can be found in Table 1. The study was conducted in January 2020 where the participants chose the date and location for the interviews. The interviews lasted 40-56 minutes and were audio-recorded and transcribed verbatim.
The audio recordings were verbatim transcribed. The research team read the transcripts separately and established themes. Based on the team's further review, the themes were refined and updated. The themes were then analysed and discussed with academic supervisors for validity and to check any inconsistencies. Before conducting the actual research, two in-service nursing students participated in a pilot study to assess the interview guide's consistency and practicality in the Brunei context.
This research has established all of key trustworthiness components. To achieve dependability, the researcher asked the participants, after each vignette, similar questions about their understanding of patient responsibility in that particular situation. All the audio recordings were transcribed verbatim to retain the quality of data analyses and objectivity of the study concluded.
Meanwhile, extracts from the interviews are included in the findings for conformability findings. For credibility, the analysis process was finalised in collaboration with all the researchers. This action is to verify the coherence between the themes and the data. The data found were saturated during the seventh interview, but to ensure that no more information emerged, two more individual interviews were carried out. The participants' age range and level of experience were broad, contributing to the findings' transferability.
This study received ethical approval from a Joint-Committee of Faculty Ethics Committee and the Committee of Ministry of Health (UBD/PAPRSBIHSREC/2019/33) dated 30th December 2019. All necessary steps were taken to ensure the confidentiality of information provided by the participants and protect their rights throughout the study. Written informed consent was received from all nurses before data collection and after receiving written and verbal explanations about the study. It was also stated that they could exit the study at any time before data analysis began.
This theme focuses on nurses' responses to diabetes as shown in the vignettes, including initial feelings of compassion, empathy, and concern, and suggestions for improving their empathy and respect for diabetic patients. The nurses recognised from the interview that empathy and sympathy are critical components of nursing care for diabetic patients. The nurses sympathised with the patients and applied the vignettes to the patient's context. The majority of them attributed their sympathy to the vignettes' circumstances, such as living alone, leading an unhealthy lifestyle, and lacking financial support and a caregiver. This was often included in the following responses:
"I feel sympathy because of the unhealthy eating, financial problem, and he knows he has diabetes but cannot help but eat unhealthily. (Nurse 1)"
One nurse, on the other hand, expressed empathy for the vignette and said he could appreciate it and put himself in their shoes:
"It would be like I imagine what if that was me – by doing that, I would know how I would feel if I was the patient. (Nurse 4)"
Almost all the other nurses agreed with this viewpoint, as they all expressed sympathy for the vignettes. The vast majority of nurses claimed that they would understand the patients’ cindition and feeling. It is evident from the responses that sympathy and empathy are natural feelings when engaging with diabetic patients. Although the explanations for these feelings vary, sympathy is closer to the patient's background. In contrast, empathy leans more on experiencing how it is to be in the 'patient's shoes'. Meanwhile, the findings also raised some concerns regarding patient management, as illustrated in the vignettes. Most nurses expressed being worried about their living conditions, which they felt could still stop it.
"I do not want their condition to worsen since newly diagnosed, preventing it from worsening. (Nurse 6)"
Concern and empathy were currently synonymous, as both coexisted and were decided upon by most nurses. Both expressions had to do with the patients' living conditions and recognise and accept life's hardship and complexity. Several nurses, on the other hand, seemed to be more concerned with the vignette patients than with being sympathetic to them:
"I feel like this is my father or my mother, so of course, I think more concerned for them. (Nurse 8)"
The trigger of this pattern was undesirable situations, which led to the patients' disease deterioration. A range of factors shaped the nurses' feelings of empathy and concern. They also accepted that if they consider patients are not being adequately cared for, or are experiencing financial issues, or have lifestyle factors that hinder them from successfully controlling their diabetes, then this will heighten their empathy and concern.
"If I know that she does not get enough financial support, it will increase my concern and empathy. (Nurse 2)"
However, when they realise that patients are getting better and are motivated to change, including undertaking their responsibilities, their empathy and concern remain the same.
"If a patient complies and becomes motivated to change, for me, the empathy and sympathy would still be the same even after knowing this. (Nurse 9)"
The emphasis of this theme was on the patients' roles and the nurses' expectations about the patient. In managing diabetes, the nurses believe that responsibility is shared. The majority of them recognised that diabetes can be prevented, particularly at a younger age, and that it is up to the patient's motivation and willpower to change it. They also felt that the patients' duty and function in preventing diabetes were more meaningful than nurses and doctors. Nurses are mindful of their critical role in empowering patients by providing diabetes education. A nurse was hopeful that patients would take their advice seriously, influencing them to make a lifestyle change.
"Say I am the patient, and I feel that the nurses are concerned about me, and I may change my mind. (Nurse 8)"
According to most nurses, patients must comply with managing their illness, in this case, diabetes mellitus. Patient compliance, they say, involves following doctors' and nurses' recommendations, embracing a healthy lifestyle, attending appointments, taking medications as prescribed, and following dietary advice.
"If we already provide some good suggestions for the patient's situation, ideally, he or she should consider and follow the advice and wants to change their lifestyle (Nurse 9)"
Nonetheless, nurses expressed a sense of relief when patients accepted their responsibilities and controlled the factors inhibiting them from achieving those responsibilities.
"If she knows already what her responsibility is, she knows what is best for her. I think it would be a happier ending. Happy for her if she can cope and she is doing well. (Nurse 3)"
However, disappointment and frustration were voiced towards patients with diabetes when they were perceived as noncompliant in managing the illness. The nurses expressed their constraints in their work because the driving factors in diabetes management are the patients, and nurses can only help them to a certain extent.
"We feel frustrated because of what else we can do for them. It is up to the patient if she wants to be healthy or not. (Nurse 7)"
Despite their disappointment with the patients, the nurses stated that they would not affect their care delivery and would remain persistent in providing motivation and health education, hoping that they would uphold their responsibilities and control their glucose levels. One nurse indicated a wish to assist patients in re-establishing their duties.
"If she does not conform to the request, I would be demotivated, but I would still want to help as much as possible. (Nurse 2)"
Despite the different backgrounds of the patient vignettes, this theme highlights the value of caring in nursing. When asked whether their perceptions of the extent to which patients bear responsibility influenced their sense of caring for them, the majority of nurses established that a multitude of factors shaped their understanding of care. This includes the patient's background, life situation, and coping abilities, all of which are distinctive.
"In terms of planning, care for them is different as their background and coping mechanisms are diverse. Hence, delivery of care is probably similar but different in delivering it, such as educating and caring for them. It is essential to know their background, so we know how to handle them differently. (Nurse 1)"
According to most nurses, individualisation is fundamental when providing nursing care, as they concur that they respond differently to each vignette. This is because the patients come from various social backgrounds and have a wide array of diabetes-related issues. However, one nurse objected, stating that her reactions are consistent across all vignettes because the common thread in all of their situations is diabetes mellitus.
"The three scenarios have similar issues, so they have their diabetes problem, depression, lack of support and unhealthy lifestyle. My reaction is the same because all of the scenarios make me concern, about their background and their unhealthy lifestyle. (Nurse 5)"
These differences of viewpoint are also related to how each vignette's sense of responsibility is regarded. The majority of nurses affirmed that patients' sense of responsibility varies broadly and that as the number of vignettes increases, so does their sense of responsibility.
The aims of this research were to explore how Bruneian nurses perceived patients with diabetes' responsibilities regarding the causes of the disease and its effect on their treatment outcomes on the medical wards. While nurses' views of patients' responsibilities were consistent, the implications for patients' responsibilities, particularly for diabetic patients, are complicated.
Sympathy, empathy, and concern were all standard responses among nurses caring for diabetic patients, though their interpretations varied. However, as empathetic understanding, concern, empathy, and sympathy have been examined as processes of emotional experiences inextricably linked (Svenaeus, 2015). Professional caring or sympathy is the guiding force of empathy ingrained in the actions and attitudes of healthcare professionals (Gelhaus, 2013). The concern becomes detrimental to providing quality care, as empathy has been linked to increased patient satisfaction and enhanced patient outcomes. This has resulted in positive rapport and a therapeutic relationship; however, when concern and empathy are not emphasised, rapport and trust development are limited. Sympathy and empathy are considered synonymous in healthcare delivery, and research indicates that they are the human characteristics, which patients seek in their healthcare providers (Sinclair et al., 2017). The nurses suggested that they may be more motivated to change if patients exhibit greater compliant behaviour in response to their concern. A trusting relationship is formed when a positive relationship is established, leading to increased compliance and patient satisfaction, which usually culminates in more desirable clinical outcomes for diabetic patients (Hojat, 2010). The relationship between satisfaction and compliance has been well defined and indicated in patients with diabetes mellitus; increased compliance contributes to higher satisfaction (Barbosa et al., 2012).
Patients' responsibilities and nurses' rights remain to be a disjointed phenomenon (Kangasniemi, Viitalähde & Porkka, 2010). They are frequently contested in terms of the nurse's role and the scope of her work. As the nurses previously stated, they could only assist patients while they were hospitalised. However, it is the patient's responsibility to manage their illness; changes in lifestyle and self-care are essential to avoid complications. The most obvious implication of patients' duties was the opportunity to participate in and implement treatments to manage their care and become experts in their well-being (Hirjaba et al., 2015). This encompasses physical activities, diet, monitoring blood glucose levels, engaging with healthcare providers and adhering to a treatment regime (Lin et al., 2008). Similarly, effective diabetes care requires a concerted effort and participation of both healthcare professionals and patients, as several authors highlighted the role of collaborating to ensure successful patient participation (Millar, Chambers & Giles, 2016). By fostering a shared sense of responsibility, both the healthcare professional and the patient can develop a satisfying partnership that results in better glycaemic control for the patient, a greater understanding of self-efficacy, and an increased level of satisfaction with care for both parties (Tol et al., 2015).
Active participation is also a fundamental component of patient empowerment, and the two terms are frequently used synonymously, as promoting patient empowerment in-hospital care is difficult without patient participation (Castro et al., 2016). Empowering patients in healthcare matters would enhance their ability to self-determine and self-regulate, ensuing in the greatest substantial rise in people's potential for health and welfare (Tol et al., 2015). Subsequently, it is understood that patient empowerment results in patients achieving further control over the situation – self-management that ultimately results in a better quality of life (Barr et al., 2015). This conclusion was made in a study conducted by Hirjaba et al. (2015). Support and encouragement from healthcare providers prompted patients to improve their self- care and were significant positive patient relationships.
Furthermore, the nurses in this study proposed that patients' responsibilities, including significantly adjusting their lifestyle, will require perseverance and dedication. However, they believed that over time, the patients' lifestyles would change ‘slowly but surely’. There is an indication that patients experience numerous relapse cycles before achieving and maintaining a healthy weight, implying that healthcare professionals should always encourage therapeutic lifestyle changes (Inzucchi et al., 2015). This was justified because majority of nurses believed in inspiring and empowering patients by helping them to play a further active role in their health management, which concentrates on disease prevention and healthcare education: a first step toward cultivating a sense of responsibility for their illness (Tol et al., 2015). Patient empowerment is not a new phenomenon; it has been known since the beginning 1970s to encourage patients to take an active role in their care and contributing to a more comprehensive view of the healthcare system (Thorne & Hayes, 1997). Along with this desire to empower patients, a tendency toward better patient involvement has emanated (Castro et al., 2016).
Moreover, the nurses presented a variety of approaches for the vignette patients. As previously stated, a patient-centred approach is associated with empowerment, which requires adjusting care to an individual's needs, desires, and contexts (Anderson & Funnell, 2010). This exemplifies the nurses' suggestion on individualised care in Brunei Darussalam. They know that each patient has a unique background, which affects their nursing care, which further means that duties are not identical for each patient due to their life circumstances and resources (Hirjaba et al., 2015).
The study focused exclusively on nurses' perspectives from a medical setting; however, a more critical perspective could be discerned from a broader perspective, such as through nurse educators who specialise in diabetes. Moreover, due to time constraints, only individual interviews were conducted. While these issues limit the ability to explain patient responsibility, the study fills a knowledge gap. It reaffirms the importance of patient empowerment in enhancing patients' quality of life and identifying future intervention targets.
This study found that the perception of patients' responsibilities is not far from those of healthcare professionals. Managing diabetes was perceived as a shared sense of responsibility, which has been related to one's obligation towards healthcare. Thus, patient participation, empowerment, and patient-centred care coexist and are key components of upholding patients' rights. Personalised individual care is also significant in providing nursing care and contributing to improved outcomes, especially in managing people with diabetes. Thus, incorporating patient empowerment is critical for enhancing patients' quality of life. Future research could examine patients' perceptions of their responsibilities to verify the root cause of their noncompliance.
The authors declare that they have no conflict of interest.
The authors are thankful to the nurses who participated in the study, as well as they appreciate the cooperation and support given by the hospital administration. Funding: The authors declare that they have no known competing financial interests
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