Diabetes care provided by national standards can improve patients' self‐management skills: A qualitative study of how people with type 2 diabetes perceive primary diabetes care

Abstract Background The increasing incidence of type 2 diabetes mellitus [T2DM] has resulted in extensive research into the characteristics of successful primary diabetes care. Even if self‐management support and continuity are increasingly recognized as important, there is still a need for deeper understanding of how patients' experiences of continuity of care coincide with their needs for self‐management and/or self‐management support. Objective To gain a deeper understanding of how people with T2DM perceive Swedish primary diabetes care and self‐management support. Methods This qualitative study used focus groups as the means for data collection. Participants were identified through a purposive sampling method differing in age, sex, diabetes duration and latest registered glycated haemoglobin level. Twenty‐eight participants formed five focus groups. Qualitative content analysis was applied to interview transcripts. Results The main theme emerging from the focus group data was that diabetes care provided by national standards improved self‐management skills. Two themes that emerged from the analysis were (a) the importance of a clarification of structures and procedures in primary diabetes care and (b) health‐care staff ‘being there’ and providing support enables trust and co‐operation to enhance self‐management. Conclusions Individual patients' self‐management resources are strengthened if the importance of providing relational continuity, management continuity and informational continuity is considered. Patients also need assistance on ‘how’ self‐management activities should be performed. Patient contribution Prior to the study, one pilot focus group was conducted with patients to obtain their perspectives on the content of the planned focus groups; thus, patients were involved in both planning and conduct of the study.


| INTRODUC TI ON
Worldwide, the number of people with type 2 diabetes mellitus (T2DM) is increasing. About 5% of the total Swedish population has diabetes, which is comparable to the figures in, for example, Australia 1 and the UK. 2 In these countries, and many others, T2DM represents about 90% of all diabetes cases. [1][2][3] Though it is well known that adequate glycaemic control can reduce the risks for complications and premature death in people with diabetes, many patients struggle to follow recommendations for treatment. 4 Consequently, they remain at risk for diabetic complications.
In order to achieve glycaemic goals while maintaining good health, people with T2DM need daily self-management. 5 Selfmanagement can be defined as 'the individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition' 6 (p. 178). However, self-management can be complicated and requires confidence on the part of the patient as well as support from health-care professionals. 7 In Sweden, the National Board of Health and Welfare is responsible for national guidelines for diabetes care. The aim of the guidelines is to offer good and equal diabetes care for the entire population. National guidelines for diabetes care provide recommendations, 140 recommendations in adults with diabetes. The guidelines cover the following areas: prevention and lifestyle, glucose control, cardiovascular disease, nursing, diabetes complications and pregnancy and diabetes. 8 Most people with T2DM in Sweden will be treated in primary care by general practitioners (GP) and registered nurses (RN) educated in diabetes care. 8,9 The increasing incidence of T2DM has resulted in extensive research into the characteristics of successful primary diabetes care. [10][11][12] However, identifying these characteristics has proven to be a daunting task due to the complexity of the T2DM disease. 13,14 Furthermore, the development and organization of primary diabetes care have been found to be guided by the perspectives of health-care professionals rather than those of the patients. 15 In a meta-synthesis, Brundisini et al 16 found that even though healthcare professionals and patients had a common understanding of barriers to and facilitators of medication adherence, many sources of misunderstanding-such as lacking communication and/or overlooked occasions for intervention-remained. In addition, recent qualitative studies have repeatedly reported that patients with T2DM have unmet needs regarding self-management skills and support and that more patient-centred and individualized support is needed. [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31] This tends to result in a gap between the expectations of people with T2DM and the care they receive. 30,32 One important aspect of care quality is continuity of care, which in turn has been shown to be associated with better glycaemic control. 33 Haggerty et al 34 defined continuity as: 'the degree to which a series of discrete healthcare events is experienced as coherent and connected and consistent with the patient's medical needs and personal context' (p. 1221). The same authors identified three types of continuity: relational continuity, management continuity and informational continuity. 34 A recent Swedish report about the general public's view of continuity within primary care 35 stated that health-care administrations, organizations and processes need to take peoples' differing needs and preferences into account, to a higher degree than they currently do. In the report, it was suggested that a range of different solutions would be needed if the health-care organization was to meet the general public's differing needs and preferences. It was also considered important to develop knowledge about how peoples' needs and preferences can be met at both local and individual levels. Such knowledge can lead to clarified goals and development of strategies for meeting the general public's many needs. The report also mentioned that members of the general public value different aspects of care differently and that preferences can be related to specific situations that will change over time. 35 There is also another important difference that should not be ignored-that between continuity in the delivery of care, that is the care providers' perspective, and continuity in the experience of care, that is the patients' perspective. 36 These days, patients' views and experiences are highly valued when quality of care is measured or evaluated. Even if self-management support is increasingly recognized as important, there is still a need for deeper understanding of how patients and health-care providers can be more deeply engaged in productive interactions with the mutual goal of improving patients' health. 15 However, it is not clear how patients' experiences of continuity of care coincide with their needs for self-management and/or self-management support.
Thus, the aim of this study was to gain a deeper understanding of how people with T2DM perceive Swedish primary diabetes care and self-management support.

| Study design and setting
In this study, a qualitative research design was used. Data were collected in 2019. The report has been made with a basis in the consolidated criteria for reporting qualitative research checklist. 37 The setting was five primary care centres in a region of mid-Sweden. The inclusion of primary care centres was based on their different list sizes and geographical areas (ie urban and rural areas). The primary care centres were required to have a manager and staff among whom at least half of the GPs were specialized in general medicine and half of the RNs were a specialist RN in primary health care. 38

| Study participants
A purposive sampling method was used to identify participants who differed in age, sex, duration of diabetes and latest registered glycated haemoglobin level (ie HbA1c, the average blood glucose level during the preceding 6-8 weeks), in order to obtain a sample resembling a typical patient group at a primary care centre. Information used for inclusion and exclusion was retrieved from medical records.
People with T2DM were eligible if they were at least 18 years of age and had been diagnosed with T2DM for a minimum of 1 year.
People with T2DM were ineligible if they did not speak or understand Swedish, received residential care in a nursing home or were diagnosed with any kind of dementia.
To achieve maximum variation, a total of 150 potential participants were identified, using the criteria above, from among the listed Invitation letters and information about the study's aim were sent by post to the people with T2DM confirmed as eligible (n = 134).
The first (RH) and the second author (ETA) contacted potential participants over a 2-week recruitment period to ask about participation and to agree upon a time and place for the focus group.
Thirty-two people with T2DM agreed to participate. However, two participants withdrew due to illness or private reasons and two missed the focus group. The final sample consisted of 28 people with T2DM who each took part in one of the five focus groups, with 5-6 people in each group.

| Data collection
Face-to-face focus groups were used as the means for data collection. The choice of using focus groups rather than individual interviews was made to shed light on the research question from different perspectives through in-depth discussions between people with T2DM. In addition, this would provide an opportunity for patients to discuss and share their individual experiences with each other.
Prior to the study, one pilot focus group was conducted with patients in order to obtain their perspectives on the content of the planned focus groups; thus, patients were involved in both planning and conduct of the study. The pilot group patients did not participate in the five planned focus groups. The pilot focus group view led to minor changes in how the questions were worded, to better suit the participants; for example, words like 'self-management' were replaced.
The focus groups were conducted at the respective primary care centres where the people with T2DM were listed. The focus groups varied in length, between 60 and 90 minutes, and were conducted by a moderator (ETA) and an assistant moderator (RH). None of the authors had a prior relationship to any of the participants.
Before the focus groups started, the participants were given information on the aim of the study, the reason for conducting it and their ethical rights. The interview guide was based on previous studies. 9,14,39 The participants were asked to describe their experiences of contacts with primary care, resources and organizational features, as well as their experiences of support for selfmanagement. Situation-based probes such as 'what do you mean (…)' and 'tell me more about (…)' were used to gain deeper understanding of the participants' descriptions. At the end of each focus group, the moderator summarized the discussions and the participants had the opportunity to comment on the summary and give clarifications if something had been misunderstood or was unclear.

| Data analysis
All focus groups were audio-recorded and transcribed verbatim.
Transcripts were verified against the audio recordings. The data were analysed using qualitative content analysis. 40 The analysis started with the second (ETA) and third author (JL) reading through the transcribed focus groups line by line. All transcripts were read several times, and relevant parts were extracted in order to gain an overall picture. The first part of the analysis process was to extract meaning units from the transcripts. Then, the meaning units were condensed to a description close to the text. Interpretation of the condensed meaning units led to identification of underlying meanings, which were each labelled with a code. The identified codes were grouped together based on similarities and differences and sorted into themes and subthemes that reflected the latent contents of the focus groups. After a process that included reflection and discussion of themes and subthemes, an overall theme was formulated. To strengthen the credibility of the analysis, the entire research group analysed the codes and proposals for themes and subthemes. Next, all authors jointly reflected on the evolving results to capture the entirety of the data material. The research group reflected and discussed until consensus was reached. To promote credibility, quotes have been used below in the presentation of the results.

| Ethics
The regional ethics committee in Uppsala approved the study (dnr: 2019-02033). The results are presented in a way that ensures none of the participants can be identified. All participants were informed, in writing and verbally, that participation was voluntary. Informed consent was obtained from all participants before participation. In addition, participants were informed that they could end their participation at any time.

| Participants characteristics
A total of 28 people diagnosed with T2DM for at least 1 year were interviewed. Table 1 presents demographic information for the sample. There was an even sex distribution among the participants and they had been diagnosed with diabetes for a mean of 9 years. Most participants were married. Twenty participants were retired.

| Themes
From the analysis of the latent content in the five focus groups, a main theme was gleaned: 'Diabetes care provided by national standards improves self-management skills'. In other words, diabetes care based on national guidelines improves self-management skills. The main theme was based on two themes and four subthemes (see Figure 1). The contents of the first subtheme indicated that the participants perceived basic prerequisites for safe diabetes care to be that staff had adequate competence in diabetes care, that there was a continuity in their visits and that they were able to feel trust for staff. Some participants said that competence was more important than continuity.

| Clarification of structures and procedures in
For me, it doesn't really matter who I see, as long as they have the knowledge … So I won't get someone who doesn't say anything and next time I'll get someone who is very well-read … then the difference becomes huge. Who the person in question is, it doesn't bother me who it is.
On the other hand, the participants perceived that lack of competence or continuity could create a sense of uncertainty. The uncertainty contributed to lower reliance on one's own ability, as well as on the staff's competence. In addition, lack of continuity contributed to staff giving different messages, which further reinforced the sense of uncertainty.
There's a mix of highly competent people and absolute greenhorns and so … I really don't know who's who … and that gives a sense of insecurity … Should I trust myself or should I trust someone else or … (FG4; EL) Other participants stated that the meaning of continuity was having a single professional contact, which was seen as a prerequisite for adherence to the guidelines. A suggestion that was given during the focus groups was that patients should regularly receive a questionnaire with questions about their health. They argued that it could serve as a way to be continuously followed up.
Yeah, but I think it would create more confidence too, if it was just like having a programme in one's care plan, that you send out this survey, like stuff that you want to know from us, every four months, or how they can keep in touch … that's continuous … so that you feel the contact isn't lost. Duration of diabetes (years), mean 9 HbA1c (mmol/mol), mean 58 Active partnership needs to permeate primary diabetes care The participants described a need for active partnership in diabetes care and that it was a shared task to support the individual patient in diabetes self-management.
So, the view, if it was shared, that it is a shared task to fix me, or the way that care is conducted, then of course that could matter. But that probably requires that one works somewhat differently with the care organisation at a regional level, I think.
(FG4; EL) The participants described that they wanted to be seen and acknowledged as human beings. It was something they expressed as being the heart of adherence to how care should be conducted. There were participants who said that they were in control of their self-management, while others felt that they lacked tools or needed support to achieve the conditions for independent self-management.  The participants believed that they needed support to be motivated to make changes in order to achieve treatment goals.
These are the benefits … that they provide motivation. Not the other way around: now you have stuck holes in your fingers and the results didn't improve.
It's the wrong way around and there's no motivation in that.
(FG4; EL) Furthermore, they said they were not helped by being accused of doing things wrong. They felt that together with the caregiver they could find solutions that would motivate them.
It has been, like … try to achieve these goals … not that I have to … more like an appeal: 'try to reach these because then you'll feel better' … they ask, 'do you think you can drop this much?' … There isn't, like, any more pressure to do it.

| D ISCUSS I ON
The analysis revealed an overall theme that described how people with T2DM perceived Swedish primary diabetes care and selfmanagement support. The main theme was that diabetes care provided by national standards improved self-management skills.
Further, the analysis revealed two themes: (a) the importance of a clarification of structures and procedures in primary diabetes care and (b) that health-care staff 'being there' and providing support enables trust and co-operation to enhance self-management.
The findings add to previous knowledge that both patients and health-care professionals need to be encouraged to engage in productive interactions in daily diabetes primary care, in order to strengthen and improve patients' self-management skills. 15 The participants in this study appeared to be rather content with the general structure and procedures in the primary diabetes care received. However, there were some unmet needs that needed to be addressed. These unmet needs might indicate that interactions with health-care providers were insufficient concerning management continuity, relational continuity and informational continuity. This finding is consistent with previous research that describes a gap between the expectations of people with T2DM and the care they receive. 30,32 The results also showed that the participants' needs for con-

| CON CLUS IONS
This study has identified that in order for people with T2DM to improve their self-management skills, they would need health-care professionals to provide diabetes care by national standards. On the basis of these findings, some practical steps for future work in primary diabetes care can be suggested. First, in order to better understand and strengthen the individual patient's self-management resources, health-care professionals need to provide relational continuity, management continuity and informational continuity. Second, even when health-care professionals adequately inform patients about self-management activities, the patients still need assistance on 'how' these activities should be performed, preferably based on national guidelines for diabetes care. Furthermore, future research should focus on how to bring about change at system level, so that GPs and RNs in primary diabetes care are adequately resourced to improve the support to their T2DM patients.

ACK N OWLED G EM ENT
The authors would like to thank the study participants.

CO N FLI C T O F I NTE R E S T
The authors have no conflicts of interest to declare.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request due to privacy/ ethical restrictions.