Self-management of type 2 diabetes mellitus: a qualitative investigation from the perspective of participants in a nurse-led, shared-care programme in the Netherlands

Diabetes mellitus constitutes a serious public health problem. The prevalence of diabetes mellitus is increasing [1]. The total number of people with diabetes is expected to increase from 171 million in 2000 to 366 million in 2030 [2]. The most significant demographic change of diabetes prevalence world-wide appears to be the increase in the proportion of people older than 65 years [2]. In the Netherlands, type 2 diabetes accounts for about 90% of all diabetes cases [3].

Western countries should establish a health-care system that meets the needs of the population [4]. Shared-care is an approach to provide needs-based care for chronically ill people [5]. In the Netherlands, several types of shared-care models have been implemented [6] in order to treat people with diabetes. In the Maastricht shared-care model, diabetes patients have been allocated to three types of care pathways: (a) patients with complicated health problems that may require radical medical decisions are referred to a medical specialist; (b) general practitioners provide basic care for the less complex cases and home health-care nurses provide the essential daily diabetes care; and (c) the diabetes specialist nurse (DSNs) has an intermediate position between the medical specialist and the general practitioner. DSNs work independently with their patients and are responsible for the care of the ones whose health status is stable but complex [7]. These patients require medium-intensity care [8]. DSNs function in both hospitals and primary care settings. This nurse-led, shared-care programme consists of a diabetes outpatient department at Maastricht University Hospital and specialty clinics in general practices. DSNs follow the agreed guidelines and protocols [7]. The tasks of the DSNs are to provide direct patient care, to organize and coordinate care (including medical care) for individual patients, and to provide advice and health education to patients and other care providers [8]. The result is that this particular nurse-led, shared-care setting is characterized by a mix of specific medical care and advanced nursing practice [9].

One of the goals of nurse-led, shared-care is to encourage people with diabetes to be active participants in their own care [5, 8]. A literature review of the patient's perception of autonomy showed that autonomy has empirically been studied in the hospital, the nursing home, and home health care, but not in this particular setting [10]. Specifically, people with type 2 diabetes are required to manage many aspects of diabetes themselves on a life-long basis. The responsibility for day-to-day disease management shifts from health-care professionals to the individual [11]. Self-management places a large burden on patients [12]. It is a complex task involving diet, skin care, medication and insulin administration, exercise and rest, self-monitoring, and consulting health-care professionals. This requires researchers to take the self-management of chronically ill people into consideration as a general experience in their lives [13].

Our study is part of an ongoing research project regarding the autonomy of people with type 2 diabetes in a nurse-led, shared-care setting [9, 10, 14]. The long-term purpose of this project is first, to identify what issues need particular attention to foster patient autonomy in diabetes care provided by DSNs and second, to formulate recommendations to promote patient autonomy on the individual as well as policy level. The design of the ongoing research project is qualitative explorative which focuses on patient autonomy as perceived by older adults with type 2 diabetes mellitus. In a previous article we report how people with type 2 diabetes who are being cared for by a DSN in a nurse-led, shared-care unit view autonomy [9]. The core category 'competency in shaping one's life' describes how people with diabetes exercise their autonomy. Competency is the individual repertoire of skills that includes recognizing the possibilities and having the abilities, capacities, and expertise that allow people to shape their own lives. This implies that people with diabetes initiate and complete various daily actions, which are, in fact, dimensions of autonomy. To shape one's life means that a person actively strives towards a form of autonomy that is exactly right for only this particular person. Autonomy is based on characteristics that are unique to this person, and it is flexible with regard to changing health conditions and life situations. Shaping one's life is a construct of joining various dimensions of autonomy. Thus, the combination of the dimensions of autonomy is not fixed, but rather a mix of what seems most appropriate at a given time. We found seven dimensions of autonomy: identification, self-management, welcomed paternalism, self-determination, shared decision-making, planned surveillance, and responsive relationships. Each of the seven dimensions gives a different outline of competency for shaping one's life. In this article we focus on the dimension self-management.

During the interviews and analysis, we became aware of the dynamic character of the seven dimensions of autonomy. Therefore, we investigated the processes that underlie these dimensions. Most of the dimensions are shaped by more than one process, and the analysis provided a vast amount of data. To do justice to our findings, we chose to classify them for presentation. According to Sandelowski [15], qualitative findings can be grouped along temporal, thematic, event, or subject lines. We have chosen to make a thematic cut since self-management is very important to people with diabetes. In this study we define self-management as encompassing activities pertaining to taking care of one's health and diabetes. Self-management includes skills for activities of daily living (regular foot care) and the instrumental activities of daily living necessary for the treatment regimen (preparing diet meals, contacting the nurse). Self-management also refers to decision-making. Skills for effective self-management activities and deciding on self-management issues are intertwined [9].

The design of this study is qualitative descriptive and exploratory, with an inductive approach as described in grounded theory [22]. According to Strauss and Corbin [22], the grounded theory approach is used because little is known about autonomy and self-management of people with type 2 diabetes in a nurse-led, shared-care setting. This method starts from the experience of the group under study, not from theories derived from the literature which has the benefit that the findings fit with practice. Grounded theory provides a way to go beyond experience – to move it from description of what is happening to understanding the process by which it is happening [23].

One of the seven ways people with type 2 diabetes pursue their autonomy as 'competency in shaping one's life' is self-management. People with diabetes exercise self-management by a set of particular activities. We consider these specific series of practices as self-management processes. These processes provide understanding how self-management in relation to autonomy actually happens and is achieved. The analysis of participant's descriptions of their self-management practices as related to autonomy resulted in three processes: daily, off-course, and preventive self-management. Figure 1 gives an overview of the process steps. Most participants reported all three kinds of self-management. Some practised all of them while others reported (a) particular self-management process(es) at a given time. Additionally, some participants said that they took process steps in a linear order, while others reported that they occasionally repeated some steps. Some said that the processes were recurrent and cyclical. Some might not take all steps, and others might take their steps in a slightly different sequence. In this study, the participants described short-term (off-course) and long-term (daily and preventive) self-management processes. They also mentioned that a short-term self-management strategy might turn into a long-term one. People evaluate the effect of the short-term decision made and the action taken. The decision to turn a short-term self-management strategy to a long-term one depends upon how well the off-course event was dealt with. We report analytical steps, but in practice these steps occur simultaneously and in an interactive process.

The purpose of this article is to report of an empirically grounded conceptualization of self-management in the context of autonomy of people with type 2 diabetes.

Diabetes self-management is a lifelong matter and is clearly directed towards care. This study shows that self-management, as described by people with diabetes themselves, goes far beyond compliance and 'good blood control'. It takes shape within the context of a unique life in which one establishes one's personal self-management strategies. Not all the participants attained or maintained the same level of self-management [17]. For some, self-management relates to daily activities based on a firm structure. Others have developed sophisticated self-management skills that allow situational modifications. Furthermore, most participants said that they did not manage diabetes equally well every day. This is congruent with other research [18, 19, 21]. As Ellison and Rayman [18] put it, "100% some days and 40% other days".

The processes of self-management require a mix of cognitive (e.g. reasoning), practical (e.g. acting), and social (e.g. communicating) skills. In line with our findings, empirical researchers report an interplay of cognitive and practical skills in their descriptions of self-management processes [17‐21]. In this study, the importance of social skills comes to the fore because people request social support in self-management. The data suggest that social support from DSNs and family caregivers is essential and fosters self-management. Research mainly reports supportive relationships with nurses [17‐21], but rarely mentions the relationships with family caregivers and their role in self-management. The participants in our study did not refer to support from peers [20, 21], but some offered their services voluntarily to diabetes support groups.

In previous research, the participants were recruited by means of a diabetes newsletter [17], a diabetes teaching and research centre [18], self-nomination or nomination by an internist [19, 20], and nomination by primary care specialists [21]. Apparently, the participants were not treated by nurses. In this study, DSNs are the main caregivers. Their tasks include both medical and nursing procedures. Our findings confirm characteristics that seem common across studies but highlight aspects that are specific to nursing, such as preventive diabetes care. Preventive self-management has not yet been conceptualized in the literature. In public health nursing, it is critical to avoid both short-term and long-term complications. Perhaps we have been led to turn our attention to preventive self-management because of the long-term and care nature of nurse-led, shared-care and our participants are older adults. Many of them suffer from more than one chronic condition, and diabetes-related complications might be linked to functional losses and increased risk of care dependency. They associate preventive self-management with sustaining freedom and prolonging independence. Most of our participants had been confronted with the complications of family members or had developed some of their own. Such experience influenced their own self-management. Attempting to avoid severe complications seems to be the motivator of preventive self-management.

Self-management is heavily influenced by professional recommendations. Understanding the processes that underlie self-management will enable nurses to provide diabetes counselling, which goes beyond generic technical education, symptom management, compliance, and metabolic control. Nurses should focus on providing people with diabetes with the necessary cognitive, social, and practical skills needed for autonomously exercising of self-management. Continuous social support is essential for self-management. DSNs are in a position to provide long-term counselling for people with diabetes and, in order to do so, they should build collaborative and accommodating relationships with their patients, and if appropriate, with family caregivers. Especially in the care for older adults DSNs should focus on preventive self-management. In some cases, DSNs need to provide support to people with diabetes and to family members which are (sometimes closely) involved in the care for the person with diabetes. In these cases DSNs should include family caregivers in their counselling. However, DSNs should keep autonomous self-management as desired by the person with diabetes as the focal point of their counselling.

People with diabetes frequently mention that their family members assist them with diabetes-specific self-management activities. In our study, people with diabetes experience the participation of close ones as positive, thus enhancing autonomous self-management. Family members should support the person with diabetes by being attentive to the self-management wishes and needs of their close ones. The involvement of family caregivers has a different meaning to each individual person with diabetes and there are various ways family members can participate in diabetes self-management. Family caregivers should take part in the consultancies with the DSN if the person with diabetes wishes so. In addition, family members too need DSNs to find answers to their caring questions to contribute effectively to the diabetes self-management of their kin. We encourage family members to assist their kin with diabetes to a degree that they view themselves as self-managers and are able to maintain an equilibrium between self-management autonomy and reliance on close ones.

A limitation of this study is that the interviews took place within a restricted geographical area. Diversity in sampling ensured data that covered a range of behaviour in different situations. An interview requires certain physical and cognitive strengths; therefore, people with severe health problems were not interviewed. Another limitation is the fact that nurses who work at the nurse-led, shared-care unit selected the participants. At the time of the study, all participants were treated by DSNs. We could not interview people who were enrolled at the nurse-led, shared-care unit but did not comply with the follow-up regime. The findings might not be applicable to the so-called non-compliers. These people might associate non-compliance with a need for autonomy or see it as a way of asserting independence. The results are comparable to those programmes similar to the one described here. First, the scope and tasks of nurses should be comparable to those of advanced practice nurses at the general practitioner's or health visitors. Secondly, the context in which care is given should have common features such as the ones in follow-up monitoring care settings. Third, the patient population should be similar to our sample of people with diabetes without acute and serious health problems.

Autonomy for people with diabetes requires competency in shaping one's life. Competency in shaping one's life means that individual autonomy is achieved by matching up various dimensions of autonomy. Self-management is an important dimension in realizing autonomy and consists of daily, off-course, and preventive self-management. These processes are interwoven and recurring. Complex processes shape the three kinds of self-management because it is much more than learning and complying with a treatment regimen. Self-management is deeply embedded in one's unique life situation. Support from DSNs and family caregivers are a prerequisite for people to self-manage the diabetes.