People with type 2 diabetes struggling for self‐management: A part study from the randomized controlled trial in RENEWING HEALTH

Abstract Aim To develop a theoretical explanation for the daily life problems and challenges perceived by those living with type 2 diabetes. Design and methods We used a grounded theory approach with a constant comparative method to discover a framework with the core concept of struggling between “ought to do” and “want to do” and related concepts. Results The struggle to self‐manage and maintain new habits can be more or less difficult depending on the patient's perceived conditions. We identified three situations illustrated in a diagram: one where there is less struggle to let go of old habits, a second where there is more of a struggle to balance between what individuals want to do and what they ought to do and a third where they are giving up struggling. Study findings show that healthcare personnel must consciously seek to understand how patients perceive their own situation.


| Aim
The aim of this study was to attain in-depth knowledge of the persons' perceptions and responses to what was happening in their lives and to identify the conditions and social patterns that affect self-management. Our research questions were What are the conditions to which patients with type 2 diabetes perceive within the process of their illness and to which they respond? What are their responses (actions-interactions or strategies) to the identified conditions? What are the outcomes of their responses? How do patients perceive their situation?
This qualitative study was part of a larger randomized controlled trial (RCT) that aimed to evaluate telemedicine self-management tools, the details of which have been previously described Ribu et al., 2013;Torbjørnsen et al., 2014). In this study, we attained more in-depth knowledge about the persons voluntarily participated in this study, according to their self-management and daily living with type 2 diabetes.

| DE S I G N AND ME THOD
In this presentation, we follow the recommendations from the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong, Sainsbury, & Craig, 2007).
We used a qualitative research design with a grounded theory (GT) approach to derive inductively a theoretical explanation for the process of living with type 2 diabetes. GT has an interactionist perspective and is concerned with identifying the psychosocial processes that explain human behaviour in various situations (Corbin & Strauss, 2008. GT also gives a systematic set of techniques and procedures to identify concepts during the research process.
This approach uses a constant comparison method to verify the importance of concepts identified during the research process and to develop the concepts' properties and dimensions (Corbin & Strauss, 2008.

| Participants
The study sample was adults with type 2 diabetes aged ≥18 years, with HbA 1c level ≥ 7.1% and those who were able to complete questionnaires in Norwegian. Participants were recruited from the two intervention groups in the Norwegian three-armed RCT of the EU project RENEWING HEALTH (RH) (N = 79). The details of the Norwegian study have been previously described (Ribu et al., 2013;Torbjørnsen et al., 2014;Holmen et al., 2014).
Study participants who agreed to follow-up interviews when signing informed consent at initial enrolment were included. Further, the same participants were assessed for their eligibility consecutively when they had finished their year-long participation in the original RCT. We conducted the interviews when the participants left the study, and the interviews continued until a degree of theoretical saturation was obtained. Of the first 50 participants eligible, 15 did not participate because they were in poor health, too busy, impossible to reach for an appointment, on vacation, etc. Of the remaining 35 willing to participate, seven ultimately declined to be interviewed and two became too ill to do so. We interviewed this remaining pool of 26 participants.

| Data collection
We collected data from May 2012-March 2013. We conducted 26 face-to-face, open-ended, in-depth interviews in the participant's home, the interviewer's office or by telephone for those who lived far away (according to participants' preferences). All interviews were audiotape, but only 24 were analysed because of mechanical problems with the recorder during the interview process. All tapes were transcribed verbatim and analysed by two of the authors (MR & LR).
The interviews ranged from 22-90 min (average 48 min). The participants gave one interview each, and we wrote memos after the interviews. The next interview was then built on experiences with the latter interview. We also returned to data to get more answers and information during the data analysis process.
A semi-structured interview guide was used in the interview process, although participants were free to add new elements during the interview (Appendix 1). The guide contained open-ended questions about (a) living with and managing their diabetes, (b) interactions with self and others (e.g., relatives, general practitioner, diabetes nurse) and (c) interactions with their environment in general and with technology specifically (i.e., technology described by Torbjørnsen, Ribu, Rønnevig, Grøttland, & Helseth, 2018). Data about the participants' acceptance with the technology will be published elsewhere (Torbjørnsen et al., 2018).

| Data analysis
Consistent with GT, data analysis occurred concurrent with data collection and included writing memos on the comparative, summary and integrative types, that is, linking categories around a core category to form theory (Corbin & Strauss, 2015). The first step of analysis was open coding and writing memos (Table 1). Our unit of analysis was incidents sharing some common characteristics and not people. Incidents refer to happenings that lead to responses.
We compared these incidents for conceptual similarities and differences both within and between interviews. Nearly all described how they tried to attain new and healthy habits and to adapt strategies to meet ever-changing conditions and perceived risks. They described this as a constant battle, ongoing every day and the struggling came up as a useful higher-level concept to describe their trying, failing, excuses and reattempts. The responses to these incidents led us towards the core category struggling between want to do and ought to do. This category was not so much about their diabetes, but about managing their conditions. The second analysis step to make theory was axial coding using the analytic tool paradigm described by Strauss (2008, 2015). Paradigm includes conditions, action-interactions and consequences or outcomes, and we used this tool to sort out and look for possible links between concepts (Corbin & Strauss, 2015).
Conditions refer to the perceived reasons that the people give for why, when and how they responded (action-interaction) to an incident. Conditions can generate emotions such as resignation when failing in behaviour change, and their confidence in being able to changing habits becomes low. A change in conditions can lead to changes in the action-interaction. Action-interaction is the responses persons give to situations in their lives and, for example, how they manage a problem they have. Consequences are outcomes of these action-interactions to self or others and are actual or anticipated. At last in the result section, we describe the situations that may explain an action-interaction within the background of certain TA B L E 1 One example of analysis related to control the blood sugar Open coding (descriptive codes) Participant 75 year, experienced a dangerous high blood sugar: "Then, it is one thing to do, and I was not interested in chewing tablets. I changed diet and took control. I have to take care of myself to be further alive" It is hard to accept that you cannot eat what you want. I always have to look back and scrutinize: what did I do to get this high blood sugar measure? My blood sugar is increasing and I am trying to have a healthy diet and to be in activity. The problem is that I do not recognize symptoms from my diabetes, so it is...as it is not there…, but the blood sugar measures show that it is present…(…). I have got diet advices in all directions. I skip out when it is far too much. Then, I am eating junk food and choosing bad solutions… I don't know why it is so difficult. My physical condition was good when I was young, now my weight is pending up and down, and I am trying to get control. My blood sugar is high Having a body that is always feeling tired due to high degree of underlying disease a "Situations" are illustrated in Figure 1 and described in the end of the Result section in the text.
conditions and anticipated consequences, to explain why some people struggle more than others do. Thus, we linked the concepts and delineated the beginning of a theory according to Corbin's paradigm (theoretical coding) (Corbin & Strauss, 2015).

| Ethical considerations
The Regional Committee for Medical and Health Research Ethics in Norway (REC no 2010/427) approved the study. Participants received both written and verbal information during the larger RCT, including assurances of full confidentiality and the right to withdraw from the study at any time without giving a reason for doing so. At that time, participants also consented to being contacted for follow-up participation in an in-depth interview after the RCT. When contacted for the interview, participants received detailed written and verbal information about the interview and were given general procedural information. After each interview, data were stored anonymously by replacing names with codes and tape recordings were stored in a locked safe.

| RE SULTS
Struggling between "want to do" and "ought to do" was the core concept that emerged from these data to explain the process by which people with type 2 diabetes attempt to manage their diabetes and their perceived conditions ( Figure 1).
The idea behind diabetes management is to make healthy living behaviours into habits so that the struggle becomes easier and the ought to part of the struggle wins more often than the want to part.
However, making the struggle easier and developing new habits are complicated because the struggle to develop and maintain healthy living habits occurs within a context of conditions that are favourable, less favourable or bad. These conditions can be of a personal or environmental nature. They can also vary in degree (favourable-bad) and dimension (e.g., low-high) and can either facilitate or constrain the individual's ability to handle challenges through strategies (ac- Some experience failing, while others find that they are giving up. In Figure 1, green illustrates the first group (no danger/walk), yellow illustrates the group struggling the most (alarm), and red illustrates the group that has given up struggling (danger).

| Patients' perceived conditions
The conditions identified by the participants in our sample as the context for action-interaction are described in Table 2. The patients describe how differences in each condition vary in degree from favourable to bad and contribute to greater or less struggle in performing activities that they are supposed to do to self-manage in situations.

| Action-Interaction
Even the most highly motivated may find it difficult to attain and maintain change when faced with difficult conditions. This is where action-interactions (strategies) come in. Both letting go of old habits and taking on new habits require individuals to take an active role in changing the conditions that might prevent them from succeeding.
In our analyses, we identified three categories of such struggling.
Those following what they ought to do in their struggle used strategies such as "making routines"; "making rules for action"; F I G U R E 1 Struggling between "ought to do" and "want to do" "using rewards to keep motivation"; "educating family and friends" about their diabetes treatment regimen; "working together with health professionals" and "involved in management". For example, a major strategy for maintaining a healthy diet was avoiding temptation through rules such as "not keeping forbidden food at home".
"If I have two litres of ice cream, it will be gone within two hours." There were times when individuals allowed themselves to indulge in foods that were not on their diet, but this was a transient event.
They might restrict food intake during the week to allow more in the weekend.
Those following what they want to do were "not accepting that change is necessary" and some were "giving up" the fight.
Furthermore, they had "no routines" and many were "ignoring their disease". Many lacked energy to take care of themselves. "I am told They knew what to do but expressed that doing it was very difficult.
Strategies among individuals in this group differed from those in the other two groups in that they made use of environmental and other conditions to "explain" and "excuse" their failure. For example, patients might tell themselves, or their HCPs, that they could not exercise because foot ulcers prevented them from doing so, rather than looking for alternative ways to exercise to accommodate their disability, such as performing chair-based activities rather than strenuous walking.
Many asked for another support than that they received: "I wish I had someone to support me by showing interest by asking such things as: How is it going? Are you taking your walks?"

| Consequences
The patients perceived that self-managing of their diabetes was a desired goal. They described how they struggled to incorporate diabetes into their daily lives by self-managing through activities such as diet and exercise, medication and following routines. Because accommodations must be lifelong and life circumstances or conditions tend to change over time, this is an ongoing process. Only the individual can self-manage, although it helps to have support from relatives and healthcare personnel. Self-management manifests in our analysis as balancing ought to do and want to do, in a constant struggle to live a healthy life. Many of the patients in our study were failing in their struggle, and some were giving up (Figure 1).

| Situations
This research has identified three categories of struggling, which lead to three situations explaining why some individuals struggle more than others: (1)  TA B L E 2 Conditions. These vary in degree from high to low

Conditions Definitions
Health competence Refers to persons' ability to manage their medical condition. Competence requires a certain level of knowledge about the condition and the regimen needed to control it. Competence also refers to, the ability to read body cues and carry out tests that indicate high or low blood sugar and the ability to adjust daily regimens based on test results

Motivation
Refers to willingness to make the changes in lifestyle required to manage their condition. High motivation requires an acceptance of having diabetes

Confidence
Refers to the previous experiences with handling difficult situations and making change Patient burden Refers to severity of the disease, presence of complications and/or co-morbidities, and/or being overweight (a contributing factor). For some persons, there are no symptoms when blood sugar is high making it difficult to manage or accept they have diabetes Lifestyle Refers to eating the foods recommended and avoiding the types and amounts of foods that tend to increase weight and/or raise blood sugars Refers to an understanding of the importance of including exercise into daily life and the mental will and physical ability to carry it out Environmental factors Refers to living conditions that are conducive to having healthy diet and carrying out physical activities. It includes having access to safe outdoor places and accommodating families and working conditions Resources Refers to the presence or absence of the financial ability as well as access to treatment, social support and transportation to and from healthcare facilities and places to exercise

Supportive professional relationship Refers to the ability to develop and maintain open and honest communications between patient and health professionals and having relationships based on mutual respect and consideration of patients' life situations
Family and friends support Refers to how person with diabetes and family and friends relate to each other in regard to the diabetes and families and friends' willingness to make the necessary adjustments in their lives to accommodate to the special needs of the persons with diabetes In Situation 1, where there was less struggle for patients to manage their diabetes, conditions were more favourable to change, or participants had a repertoire of strategies for "working around" conditions that might otherwise stand in the way of making change.
They perceived the situation as necessary to manage: I had many unhealthy habits. When I was diagnosed with type 2 diabetes, I realized that I had to tighten up myself. I started thinking differently, I knew I had to postpone complications.
People who followed the regimen were those who remained in constant dialogue with themselves and others to assess situations and to work out ways of managing. "Slowly but surely, I change my habits. I am still smoking, but I have agreed with the GP that it has to be coming." There was no discrepancy between what the HCPs wanted participants to do and what the participants themselves wanted to do.
A major strategy used by people in this group was to establish or maintain a "working" relationship with their HCP. "You must have a good relationship with your GP, otherwise you have a problem".
Some in this group even changed their GPs when they felt that they did not receive the amount and type of support that they needed.
In addition, there were few environmental and family conditions preventing them from making changes to their habits.
Achieving and maintaining change was, however, not easy for this group either, and there were still obstacles to doing always what they ought to do.
These patients had the ability to read body cues indicating when their blood sugar levels were too high or low. Further, they kept track of their blood sugar levels through "frequently monitoring their blood glucose" and "comparing monitoring results against their diet and activity".
They worked at maintaining a positive attitude by telling themselves "you will make it through this" and "you have to go on with life." They found ways to include exercise in their daily routines by walking the dog or connecting exercise with doing household chores. Some attended groups that focused on physical training (e.g., walking and swimming).
People in this group developed new attitudes regarding food, thinking of it as "a treatment and kind of medication." They learned to prepare and eat healthy foods, for example, "buying fresh food and making it from scratch." These persons seem to be more accepting of their disease saying that "despite their diabetes," they were happy with life. They recognized that they "had to find their own way and take care of themselves after all." In However, what should I have eaten?
Relatives and friends of those in this group were not always supportive. Families were unwilling to let go of their old eating habits.
"Usually I manage OK, but I get tired of making two dinners. My family will not eat the same as me." Many people in this group perceived that they did not have competent and caring support from their HCPs. A diabetes nurse was unavailable to them because they were not ill enough. Afterwards I have regret.
In Situation 3, participants "gave up the struggle" to develop or maintain new habits necessary to keep their blood sugar levels stable and within a range necessary to maintain optimum control over their type 2 diabetes. It is important to keep in mind that conditions can change and that any major change may bring about a "renewed" struggle between ought to do and want to do.
Some in our study felt that the conditions under which they were living (home life, disabilities) were incompatible with developing and maintaining a healthy lifestyle. They gave up when ought to do was too hard and more often than not followed the want to path. Many of these participants expressed knowledge about what they were supposed to do but lacked strategies for making such changes. It was a type of downward spiral where they lacked energy and continuously felt tired, which they described in terms of "fluctuating or elevated blood sugar level," "low energy" and "fatigue." The development of diabetic complications and/or co-morbidities made it even more difficult for them: I would like someone to come and take me by the ears until I have started exercising. We know we must. We were good at it for a while, but then poor circulation in the legs put an end to that.
The main strategy was to follow what they want to do: "I do nothing to reduce weight. I take it as it comes." These individuals indicated that they had a no supportive relationship with their GP and that they experienced a lot of stress by "looking for a new available GP." There was a gliding transition between the strategies in situations 1 and 2, but the negative strategies, or lack of strategies, used by patients in group 3 blocked their ability to change habits.
The consequences of not manage to take care of themselves and giving up the struggle might be permanent or temporary. If temporary, a person might get back into the struggle and, for example, gain better control of blood sugar levels and disease course.

| D ISCUSS I ON
This study gives a novel explanation of the problems and challenges perceived by people with type 2 diabetes who are struggling to make lifestyle changes. Our findings suggest that those living under a less favourable situation struggle the most and for them, living with diabetes was a continuous conflict between want to do and ought to do.
One important finding in this study is that many of the participants struggling the most perceived a need for more support than they received from their HCPs, and the support that they received from their GPs was perceived as advice and medical treatment rather than respect and understanding. No time was allotted during consultations for discussing everyday life challenges related to their disease. It has earlier been described how HCPs also are responsible for involving the patients in decisions and not necessary expect them to follow their advice (Zoffmann et al., 2016).
Yet, not everyone in our study was willing to discuss their situation with their HCPs. Previous research has identified and examined factors associated with patient reluctance to discuss self-management in a treatment relationship (Beverly et al., 2012;Ritholz et al., 2014). Reluctant patients reported that they did not want to disappoint their doctors or to be judged for not managing. Many reported shame, guilt and embarrassment, consistent with the patients in our study. Such relationships may be a barrier to learning and should be raised and discussed (Beverly et al., 2012;Ritholz et al., 2014).
The patterns described by the persons in our study can facilitate the HCP's understanding of their situation. It has earlier been described in a model for illness integration support for people with type 2 diabetes, how active listening and a focus on emotional and existential issues is factors facilitating persons' self-management (Hörnsten, Jutterström, Audulv, & Lundman, 2011). Further, the support to these patients should be respectful and allow for the persons preferences and needs and the persons' values should guide decisions (Powers et al., 2015). The HCP must also pay attention to different point of views between patients and professionals (Zoffmann et al., 2016). In our study, some persons did change their GP, due to confusing support or too strict advices, but the situation was seldom described as better with a "new" GP. The life with diabetes can be troublesome for many, due to several recommendations to follow, and as such, we are questioning whether The persons in need of self-management support are, however, not a homogeneous group, and we have categorized the persons in our study into three groups due to their perceived situations. Earlier research has shown that those living with diabetes and improved their outcomes were more engaged and had higher self-efficacy and were more likely to adopt newly learned skills, than disempowered persons with worse health and few resources and with lower positive and active engagement in life. The latter had, however, the potential to increase both health and social inequalities, when HCPs were using this knowledge to encourage these persons to participate in lifestyle programs (Packer et al., 2012). Particular considerations should, however, be given to populations of lower socioeconomic status (WHO, 2016). In our study, we found, for example, that those who were receivers of minimum state pension perceived economical restrictions to do what they wanted to do.
Our study has identified a broader range of conditions and other issues perceived by patients influencing their opportunity to selfmanage. These issues can be used to a further development of a checklist or patient-reported outcome measure (PROM) (Nelson et al., 2015), as a basis for creating a meaningful dialogue by listening to the patients. The knowledge gained from such instruments could ensure that HCPs develop skills necessary for guiding patients' needs to selfmanage their diabetes in their daily life. Such knowledge would also be valuable in designing interventions for those with type 2 diabetes.
Our findings are also in line with a metasynthesis of previous research of persons with long-term illness, largely adults with diabetes and cardiovascular disease, that gave a detailed description of negative (barriers) and positive (facilitators) factors influencing self-management (Schulman-Green et al., 2016). The authors described interaction of factors forming a "factor-profile" as helpful in determining needed self-management interventions. In our study, we have identified three groups and analysed how more

| CON CLUS ION
Our findings represent a broad range of patterns perceived by persons living with type 2 diabetes, and a major study finding is that persons in each of the three groups needed different approaches from their HCPs because of the heterogeneous conditions under which they were living. Nurses and other HCPs need to assess individuals based on their unique struggles. Those who struggle the least need checking and supporting. The largest group, those who struggle the most, need help in developing strategies. Those who have given up need sophisticated individualized support and tighter follow-up compared with those in the other groups.
It should not be expected that HCPs will find solutions to every patient's self-management challenge, but there are many ways to support such patients. Different approaches merit further investigation.

ACK N OWLED G EM ENTS
We would like to thank the participants who gave us insight into how they perceive living with and managing their diabetes. And thank you to everyone who made a great effort during the RCT and to those who made this study possible, Astrid Torbjørnsen (RN, Assistant Professor and PhD student), Heidi Holmen (RN, PhD), Tone Singsås (RN, Diabetes Specialist Nurse) and the general practitioners.

CO N FLI C T O F I NTE R E S T
No conflict of declaration.

AUTH O R CO NTR I B UTI O N
Authors MR and LR analysed and reanalysed all of the interviews to find their essential concepts, discussed the coded data and resolved discrepancies through consensus. JC participated in some of these discussions and supervised the use of GT. Authors MR and LR wrote the paper together, and JC looked over the paper.