Seven self-care behaviors—healthy coping, healthy eating, being active, taking medication, monitoring, reducing risk, and problem-solving—are recommended for individuals with diabetes to achieve optimal health and quality of life. People newly diagnosed with type 2 diabetes may find it challenging to learn and properly incorporate all of these self-care behaviors into their life. This qualitative study explored the experiences and perceived immediate self-management and psychosocial support needs in individuals newly diagnosed with type 2 diabetes. Data analysis revealed the significant challenges individuals encounter after a type 2 diabetes diagnosis. Five main themes were identified: 1) type 2 diabetes diagnosis competes with other complex life challenges, 2) difficulty in performing behavior modification actions, 3) lack of support, 4) emergence of emotional and psychological issues, and 5) need for planned individualized follow-up support after a type 2 diabetes diagnosis. This study revealed a gap in care after type 2 diabetes diagnosis. Individualized support is needed to assist people in moving successfully from diagnosis to being well equipped with the knowledge and skills necessary to properly manage the condition.
An estimated 37.3 million people in the United States live with diabetes. Each year, ∼1.4 million new cases of diabetes are diagnosed among U.S. adults ≥18 years of age, with 90–95% being type 2 diabetes cases (1). Diabetes is the most expensive chronic condition to manage in the United States because it is often associated with complications (2,3). Unfortunately, these complications occur across the life span and are increasingly affecting people between the ages of 18 and 64 years (4). All of these staggering diabetes statistics underscore the serious threat diabetes poses to the human and financial capital of the United States.
Achieving recommended glycemic targets is one of the ultimate goals of diabetes management (5). However, there is no one-size-fits-all approach to achieving glycemic outcomes. Individuals living with diabetes perform complex daily self-management activities (6) to control or mitigate the effects of diabetes on their health and delay complications (7,8). Diabetes self-care behaviors include healthy coping, healthy eating, being active, taking medication, monitoring, problem-solving, and reducing risk (9). Performing these tasks can be a daunting undertaking for people newly diagnosed with type 2 diabetes, as doing so often requires significantly modifying behaviors to incorporate and adjust to self-care routines (6).
Diabetes self-management education and support (DSMES) is therefore recommended for all people living with diabetes. DSMES is associated with improved diabetes self-management and health outcomes, healthy coping, fewer diabetes complications, reduced hospitalizations and health care expenditures, and less diabetes distress (6). However, despite evidence detailing the value of DSMES (10), referral rates and attendance rates are exceedingly low, especially among newly diagnosed individuals (11,12).
There is clear evidence that DSMES is underutilized and that people who do not participate in DSMES are more likely to develop diabetes complications compared with their counterparts who attend a DSMES program (13). Despite these findings, there remains a lack of knowledge about how to facilitate smooth transitions from diagnosis to readiness to take an active role in diabetes self-management. Furthermore, it is unknown how individuals with type 2 diabetes want to be supported immediately after diagnosis to help them successfully engage in diabetes self-management. The purpose of this study was to explore the experiences and perceived immediate self-management and psychosocial support needs in individuals newly diagnosed with type 2 diabetes.
Addressing this knowledge gap will help us better understand how to support people to meet their stage of readiness after a type 2 diabetes diagnosis. This information can inform the design of intervention studies to improve self-management of diabetes after diagnosis and facilitate referral and uptake of DSMES (14,15).
Research Design and Methods
Study Design and Sampling
This study used a qualitative study design to learn about the experiences and support needs of people with type 2 diabetes in the United States.
Participants and Recruitment
Recruitment for the study included ResearchMatch, a national volunteer health registry created by several academic institutions and supported by the U.S. National Institutes of Health as part of the Clinical Translational Science Award program. ResearchMatch has a large population of volunteers who have consented to being contacted by researchers about health studies for which they may be eligible. A second recruitment source was Studyfinder, a research recruitment site for The Pennsylvania State University. Recruitment resulted in 157 potential participants who were interested in the study. A detailed description of the recruitment process was summarized in a previous article (16). Review and approval for this study and all procedures were obtained from The Pennsylvania State University institutional review board.
Adults residing in the United States who were 18–64 years of age and had been diagnosed with type 2 diabetes within the previous 12 months were eligible for the study. Potential participants needed to be willing to take part in a synchronous or asynchronous online focus group or individual interview in English. Purposeful sampling of participants ensured that the sample represented diversity in terms of age, sex, and race. The aim was to recruit 25 participants with a goal of achieving data saturation based on previous type 2 diabetes qualitative studies (17,18). After participant 24, no new themes emerged, and the study was closed.
Study Instrument
A semistructured focus group interview guide was developed by the lead researcher using the concepts of transitions theory (nature of transition and transition conditions) (19) to elicit information about participants’ experiences and support needs. The guide was reviewed by coauthors who are experts in diabetes and qualitative research. The guide was pilot-tested with three people living with type 2 diabetes. Based on reviewers’ recommendations, the interview questions were altered and rearranged to improve participants’ understand and the flow of participants’ experiences.
Data Collection
Data were collected through semistructured synchronous or asynchronous online focus groups or individual in-depth interviews. The interviews and focus groups were conducted from 16 August to 2 December 2021. All the focus groups and individual interviews were moderated by the first author, who has a background in nursing and public health and experience conducting qualitative research. Participants took part in either a synchronous online focus group via Zoom (n = 9), an asynchronous online focus group via a private Facebook group page (n = 5), or individual interviews (n = 10).
Before the interviews, participants completed a demographic survey. The synchronous focus groups lasted 120 minutes, and the individual interviews lasted, on average, 58 minutes (range 45–60 minutes). All interviews were audio-recorded. The asynchronous group was conducted on a private Facebook group page for 7 days to give individuals sufficient time to reflect and comment on posts at their convenience. The moderator took notes during interviews and reflected on the discussions after each one to evaluate any moderator biases during the interactions. Participants who took part in the online focus groups were compensated with $40 each, and $20 Amazon electronic gift cards were provided to those who took part in individual interviews. Transcripts were sent to all participants in the focus groups and five of the participants in individual interviews for feedback. Because of the short time between data collection and data analysis, five transcripts were not sent to study participants for member checks. Ten participants provided feedback on their transcripts within the 2-week review period.
Data Analysis
A professional transcription service transcribed the audio recordings of the synchronous online focus groups and individual interviews verbatim. The lead author double-checked the accuracy of each transcript against the audio recording. The deidentified transcripts were uploaded into MAXQDA software (VERBI Software, Berlin, Germany) to facilitate coding and analysis.
An inductive thematic analysis approach was used to analyze the data (20). The lead author read all of the transcripts twice before developing initial codes. The codes were categorized based on their similarities, and the initial 13 categories were combined to form six themes. The codes, categories, and themes were shared with the coauthors for feedback. Categories and themes were refined via discussion among the coauthors, and five final themes were determined by consensus.
Results
The demographic characteristics of the participants are summarized in Table 1. In all, 24 participants (14 female, 10 male) completed the study. Participants were from 18 states in the United States and were between the ages of 25 and 60 years. The majority of participants were White (58%) and had at least a college degree (79%). Interestingly, only 21% of the participants were referred for diabetes education after diagnosis (16).
Demographic Characteristics of Study Participants
| Variables . | n (%) . |
|---|---|
| Age, years 18–30 31–40 41–50 51–60 | 6 (25) 3 (12.5) 3 (12.5) 12 (50) |
| Sex Female Male | 14 (58.3) 10 (41.7) |
| Race/ethnicity Black White Non-Hispanic Hispanic | 10 (41.7) 14 (58.3) 24 (100) 0 (0) |
| Education level High school diploma Associate’s degree Some college 4-Year college degree/bachelor’s degree Post-baccalaureate/master’s degree/doctorate | 2 (8.3) 1 (4.2) 2 (8.3) 11 (45.8) 8 (33.3) |
| Referral for diabetes education Yes No | 5 (20.8) 19 (79.2) |
| Variables . | n (%) . |
|---|---|
| Age, years 18–30 31–40 41–50 51–60 | 6 (25) 3 (12.5) 3 (12.5) 12 (50) |
| Sex Female Male | 14 (58.3) 10 (41.7) |
| Race/ethnicity Black White Non-Hispanic Hispanic | 10 (41.7) 14 (58.3) 24 (100) 0 (0) |
| Education level High school diploma Associate’s degree Some college 4-Year college degree/bachelor’s degree Post-baccalaureate/master’s degree/doctorate | 2 (8.3) 1 (4.2) 2 (8.3) 11 (45.8) 8 (33.3) |
| Referral for diabetes education Yes No | 5 (20.8) 19 (79.2) |
Qualitative Themes
Table 2 summarizes the five themes that emerged from the experiences shared about challenges and support needed after diagnosis.
Identified Themes and Subthemes
| Theme . | Subthemes . |
|---|---|
| 1. Type 2 diabetes diagnosis competes with other complex life challenges | A. Tackling the most important thing first B. Navigating competing stressors without support |
| 2. Difficulty in performing behavior modification actions | A. Self-imposed pressure to change lifestyle immediately B. Uncertainties about blood glucose values |
| 3. Lack of support | A. Learn on their own B. Inadequate social support |
| 4. Emergence of emotional and psychological issues | A. Emotional challenges B. Psychological challenges |
| 5. Need for planned individualized follow-up support | A. Provide individualized follow-up appointments B. Delivery, frequency, and duration of follow-up support C. Provide individualized information D. Living with diabetes is lonely |
| Theme . | Subthemes . |
|---|---|
| 1. Type 2 diabetes diagnosis competes with other complex life challenges | A. Tackling the most important thing first B. Navigating competing stressors without support |
| 2. Difficulty in performing behavior modification actions | A. Self-imposed pressure to change lifestyle immediately B. Uncertainties about blood glucose values |
| 3. Lack of support | A. Learn on their own B. Inadequate social support |
| 4. Emergence of emotional and psychological issues | A. Emotional challenges B. Psychological challenges |
| 5. Need for planned individualized follow-up support | A. Provide individualized follow-up appointments B. Delivery, frequency, and duration of follow-up support C. Provide individualized information D. Living with diabetes is lonely |
Theme 1: Type 2 Diabetes Diagnosis Competes With Other Complex Life Challenges
Subtheme 1A: Tackling the Most Important Thing First
Most of the participants shared that they experienced significant life events just before or after their diagnosis. Examples of these competing life events included the birth of a baby, marital separation, attempted suicide by a relative, other health concerns, and financial difficulties. These life events affected individuals’ ability to manage their type 2 diabetes because they had to deal with things they thought were more important. One participant described his experience with family life after diagnosis:
“I had my first child this year, and I was diagnosed this year in February . . . . My wife gave birth in March . . . . It was not so far from each other. I had to pay for my diabetes treatment, and I also had to pay for my wife’s hospital bills. That was not so easy for me . . . . It was around May that I was able to focus and pay for my treatments and everything concerning the diabetes.”
(33-year-old Black male, focus group 2)
Almost all the participants talked about the impact of the coronavirus disease 2019 (COVID-19) pandemic on their socioeconomic well-being and their motivation to perform healthy activities. One participant said:
“I think the COVID pandemic played a part in the timing of my diagnosis, too. Not being able to do as much because of lockdowns kept me at home much more, which led to less exercise and not eating as well. I could have dealt with it differently as well, but the pandemic didn’t give much motivation for doing anything.”
(51-year-old White female, Facebook group)
Subtheme 1B: Navigating Competing Stressors Without Support
The type 2 diabetes diagnosis became an additional burden because some participants were diagnosed when they were already dealing with other difficult diagnoses such as cancer, kidney problems, depression, and cardiac conditions. With different life events requiring attention, individuals were burdened with figuring out on their own how to manage these conditions simultaneously.
Theme 2: Difficulty in Performing Behavior Modification Actions
Subtheme 2A: Self-Imposed Pressure to Change Lifestyle Immediately
In the absence of formal diabetes education and support, many participants mentioned that they tried to make drastic and unsustainable changes to their eating habits and physical activity levels right after diagnosis. Participants assumed that, by changing their lifestyle, they would be able to manage diabetes. One participant shared his perception:
“At the beginning, I was actually depriving myself of food because I thought the only way to control this was by what I put in my mouth.”
(60-year-old White male, individual interview)
Making dietary modifications with regard to the quantity of food eaten, food choices, ways of cooking, and need to count carbohydrates was the most difficult diabetes self-management action for the majority of participants. Some participants indicated that this challenge made it difficult to continue to be mindful of what they eat. Most participants agreed that it was expensive to eat healthfully and to follow all of the dietary suggestions needed to manage the condition successfully. Said one participant:
“ . . . . One thing I found was that the food price of eating healthy was more expensive for me than the junk food. So, I found myself struggling with that even though I went through the nutrition class.”
(53-year-old Black male, individual interview)
Many participants admitted that they were not fond of exercise, but because of the diagnosis, they felt committed to be physically active. For some, the information health care providers (HCPs) shared about exercise was not specific, making it difficult for individuals to know if they were meeting their physical activity targets or not. One participant said:
“I didn't really know if I was [exercising] enough or if I was doing the right kind or how, actually, do I really need to be active.”
(41-year-old White male, focus group 1)
Sub-Theme 2B: Uncertainties About Blood Glucose Values
Although some participants were monitoring their blood glucose, they shared that they could not interpret the values because, having not received comprehensive diabetes education, the purpose of monitoring and their blood glucose target ranges were not explained to them. Theses participants said they were worried about whether they were achieving their targets. For example, one said:
“ . . . . It took, I think, until the second visit with the endocrinologist for me to remember to ask, ‘What range do you want my sugar in every day?’ I didn’t even know that. I was assuming [it] was high when maybe [it] wasn’t.”
(60-year-old White male, individual interview)
Participants felt their blood glucose values were still not interpreted for them even when they went to the hospital. They were often told the values are either good or bad without knowing what the ideal values were supposed to be. As one person described it:
“I get my blood sugar done every 3 months . . . . [My provider] tells me about it and says, ‘Yours [blood glucose] is not getting any better. You’ve got to not eat this and that.’ That’s all she does.”
(35-year-old White female, focus group 1)
Theme 3: Lack of Support
Subtheme 3A: Learn on Their Own
The majority of participants in this study shared they did not receive enough information from their HCPs about the condition, nor were they referred for comprehensive diabetes education. Hence, many resorted to different resources for the information they needed to self-manage the condition.
“I’ve never seen a nutritionist. I’ve never seen a diabetes educator. I know the doctors are busy and there’s a limit to how much they can cover in the limited amount of time that they have, so I’ve been doing my own research. I’ve got a friend who’s a nurse, and so we had a long talk, and I’m waiting to hear back from my insurance company to see if they have a diabetes chronic disease program and [whether I] should . . . get enrolled in that.
(60-year-old White male, individual interview)
Almost all the participants resorted to the Internet in search of more information. One said:
“ . . . I live in a very rural setting, and the nearest big city to me is a 40-minute drive away from me. So, there’s not a real easy way for me to get to any appointments or anything like that. I’m almost forced to do all my information searching online.”
(41-year-old White male, focus group 1)
Searching for information on the Internet was challenging because they were not sure what information was reliable and trustworthy. As one participant put it:
“ . . . [W]hen you go on the Internet, . . . you get diabetic books and stuff, but so much conflicting information . . . . This one says eat beans; this one says a half cup of ice cream twice a week [is] fine; this one says never eat sugar again. So, it’s so confusing and so conflicting that you don’t really know which way to go.”
(51-year-old White female, individual interview)
Because of this inconsistency and the lack of readily available information, some people said that conducting their own research delayed them from taking the right actions. Although the Internet was widely used by the participants, those in the rural areas said it was an expensive resource and unreliable.
Subtheme 3B: Inadequate Social Support
Participants also felt there was little to no social support to assist them in coping with the diagnosis. Many struggled with self-management and could not reach their desired health goals because of these social problems (Table 3).
Social Challenges Encountered
| Type of Social Challenge . | Representative Quotes . |
|---|---|
| Financial challenges | “I discovered that I couldn’t keep up with my finances, . . . so I had to improvise . . . . ” (30-year-old Black male, Facebook group 1) |
| “I wish I had a little bit healthier, cheaper stores where I live . . . . If I wanted healthy and cheaper food, I had to go way out [from] where I live.” (53-year-old Black male, individual interview) | |
| Lack of family support | “I would have definitely expected support from close family, but I really didn’t receive that, and it was highly disappointing. I don’t have a lot of family . . . so, when they [were] all rather neutral, it was disappointing.” (41-year-old White male, focus group 1) |
| Lack of community diabetes support | “I live in a very rural area, and there are places [diabetes groups] in the city about 45 minutes away, but it’s not convenient . . . . It is a lot of travel time.” (51-year-old White female, individual interview) |
| Type of Social Challenge . | Representative Quotes . |
|---|---|
| Financial challenges | “I discovered that I couldn’t keep up with my finances, . . . so I had to improvise . . . . ” (30-year-old Black male, Facebook group 1) |
| “I wish I had a little bit healthier, cheaper stores where I live . . . . If I wanted healthy and cheaper food, I had to go way out [from] where I live.” (53-year-old Black male, individual interview) | |
| Lack of family support | “I would have definitely expected support from close family, but I really didn’t receive that, and it was highly disappointing. I don’t have a lot of family . . . so, when they [were] all rather neutral, it was disappointing.” (41-year-old White male, focus group 1) |
| Lack of community diabetes support | “I live in a very rural area, and there are places [diabetes groups] in the city about 45 minutes away, but it’s not convenient . . . . It is a lot of travel time.” (51-year-old White female, individual interview) |
Theme 4: Emergence of Emotional and Psychological Issues
Subtheme 4A: Emotional Challenges
Many described living with type 2 diabetes as an isolated moment in their lives because of the lack of active support from anyone. Representative quotes include:
“I felt like I should have had a group around me. I should have had a support system around me . . . . It’s a very isolating diagnosis.”
(55-year-old White female, individual interview)
“I had frustration early on, frustration from feeling like I didn’t have all the information or all the knowledge that I needed. It wasn’t provided . . . . I had to figure a lot of things out on my own.”
(52-year-old White male, individual interview)
Some said they wanted emotional support after some time had passed:
“I didn’t need emotional support in the beginning, I think after a while, I figured that I needed it because I had the struggle . . . . I couldn’t get my diabetes down, and I was eating unhealthily, and it was a mind thing for me . . . . Mentally, I saw myself that I just couldn’t get my sugar level down.”
(53-year-old Black male, individual interview)
Failed attempts to achieve blood glucose outcomes and other clinical targets left some participants feeling depressed about the condition. Some were tempted to give up trying to maintain all of the needed lifestyle modifications.
Subtheme 4B: Psychological Challenges
The first few weeks after diagnosis were noted as the most challenging time. Many agreed that it was mentally challenging to try to make numerous lifestyle changes to improve the condition. Many developed fears related to the diagnosis. For example, one participant said:
“I got to a point where I was afraid to go to the doctor because I was afraid to get my results—blood test sample and whatever they do. I remember the doctor telling me that he was trying to save my life a little bit longer because I was headed for kidney failure and stuff like that. So, I was scared to go to the doctor.”
(53-year-old Black male, individual interview)
Theme 5: Need for Planned Individualized Follow-Up Support
Subtheme 5A: Provide Individualized Follow-Up Appointments
Participants recommended that HCPs provide individualized follow-up and support to help alleviate some of the self-management and psychosocial challenges they encountered after diagnosis. The time participants stated they wanted to be contacted for the first follow-up appointment ranged from the first day of diagnosis to about 1 month after diagnosis. One participant shared how she wanted to be approached about the follow-up appointment:
“From diagnosis . . . just to touch base, not even a full sitdown, just touch base and say, ‘I’m your diabetes coordinator. I’m going to be working with you. We can make an appointment for next week’ or whatever.”
(51-year-old White female, individual interview)
Many believed this was an important moment to gradually introduce individuals to the next steps in managing the condition after the diagnosis. One person said:
“ . . . after the first confirmation visit, it would have been helpful, whether it was the same day or within a window of a week to 10 days. Having a conversation with somebody to just say, ‘Here are some of the things to think about. Here are some of the things I’d like you to do. Here are some of the things, again, that are pitfalls that we’ve experienced from other patients. But it’s okay.’ It’s a reassurance of how they [the person with diabetes] will be supported.”
(60-year-old White male, individual interview)
However, many of the participants believed that they should be given reasonable time and space to process the diagnosis, with the recognition that they may not be ready for immediate contact. The following is a conversation that occurred between two participants in one of the focus groups.
“I would definitely say within the first week, maybe two weeks at most . . . . ”
(41-year-old White male, focus group 1)
“Yeah, not too early, but not too late. Probably about a month—highest a month, but earliest 2 weeks, to give you time to understand and realize you have diabetes.”
(35-year-old White female, focus group 1)
Subtheme 5B: Delivery, Frequency, and Duration of the Follow-Up Support
Mode of delivery
Participants mostly stated they wanted the first follow-up session to be offered on an individual basis through either in-person or video conference calls. Participants desired an empathetic atmosphere where they could openly communicate their concerns. As one explained:
“I feel face-to-face interaction, either in-person or online, would be good. It feels more personal. It feels more like they get what you’re saying, they feel your pain, and they have more empathy that way.”
(41-year-old White male, focus group 1)
While individuals had many suggestions of ways to reach people, the common message was that follow-up services should be provided by a trusted, knowledgeable source in the beginning.
Frequency of the follow-up support
Participants gave varying responses regarding the frequency and duration of follow-up support. They indicated that the frequency should also be individualized to meet people’s varying needs. However, participants who least expected the diagnosis said they wanted frequent follow-up support during the first few weeks to months of the diagnosis, until they were able to perform self-care activities successfully. One participant shared how he wanted to be supported by someone on the health care team:
“You’re starting something new, so you need somebody to remind you of what you have to do or you . . . might actually skip things. So, I feel like they can maybe give you a call, probably morning and evening. Just to make sure that you’re actually taking your dose and doing the exercise and stuff.”
(35-year-old White male, focus group 1)
Another participant also shared his preference:
“I think, to me at least, somebody would check in at least once a week.”
(53-year-old Black male, individual interview)
Duration of the follow-up support
Participants varied in their need for follow-up support between 3 and 6 months. One said:
“I think if you could follow up, say, do it in 2 weeks, and then a month, and then once a month for at least 3 months. Honestly, if they could do it for 6 months, but I don’t think that’s realistic. But, if you could do it 3 months . . . because you may not even know you’re doing the wrong things . . . . ”
(55-year-old White female, individual interview)
Subtheme 5C: Provide Individualized Information
Given that the diagnosis was unexpected for most participants, they wanted to be provided emotional support and gradually guided to cope with all of the health behavior changes they needed to make. Therefore, they said, all information within this period needs to be individualized and tailored to meet people’s immediate needs. They recommended setting goals for individuals, especially in the first few weeks after diagnosis. A participant shared his perception about the first thing to be done for anyone newly diagnosed with type 2 diabetes:
“ . . . the very first thing has to be food awareness, . . . which is being aware of what you’re eating . . . . I know you can’t control what your pancreas does, but you can control what goes into your mouth. And that’s where it starts. That is the number one thing that should be in the first week. After that, then you get into monitoring your glucose using the glucometer and then staying physically active.”
(52-year-old White male, individual interview)
In subsequent weeks, participants said, they wanted additional right-sized information to be provided. One participant shared:
“Then, in the second week, here’s another layer of things to think about, to add . . . . Do the same thing for the third week and the fourth week, so it becomes a gradual build of information, a gradual build of things to do, things to change, so it’s not like you’ve got to flip a switch and everything has to happen at once. It would have made it easier to accept that gradual change in habit, gradual change in taking medication, more gradual change in assimilating information in your mind, [in] your own way.”
(60-year-old White male, individual interview)
When asked how they expect to be helped to set goals, many were of the view that they needed to be guided to make the best decision because they were new to the condition and would not be able to make the best choices right from the beginning. One participant shared:
“I want to say we worked together, but I wasn’t educated enough to set the goals. I needed a framework set . . . . I needed, like, little goals where it said, ‘Okay, your choice this week for a goal is you can cook three healthy meals, or you can remove two bad snacks from your plan.’ That’s the level, okay? Let me make that little choice, but don’t ask me to even make the beginning statement. I couldn’t have made the statement on my own: ‘I’m going to make three better meals or get rid of two bad snacks.’ Give me just a simple choice and call that shared decision-making. It’s not really shared decision-making, but let me make the little decision [and] you give me the big pieces.”
(54-year-old White female, individual interview)
Subtheme 5D: Living With Diabetes Is Lonely
Connection with a health care partner
Participants said there should be ongoing emotional support or counseling to help individuals deal with the reality of having type 2 diabetes. Also, individuals felt that it was not possible to learn all that they needed to know about the condition within a short period. Therefore, they needed someone to be readily available to provide more information as they advanced. One participant explained:
“I mean, ideally, if there was . . . a diabetes coordinator, someone that I could reach out to that, based on their experiences, based on standing orders through a health system, . . . they’re comfortable enough to say, ‘Try this,’ ‘Don’t try that,’ or ‘I’m going to need to reach out to your doctor’ . . . in the hopes that they get a quicker or sooner response . . . even someone to just say, ‘Hey, am I crazy?’ and they reassure you, ‘No. This is just a normal part of the disease cycle. Here are some tips to try to manage that. If in X number of days, you don’t see an improvement, call me back.’”
(60-year-old White male, individual interview)
Social support
Aside from having a contact person at the health care facility for support, individuals wanted additional support from the community, family members, and peers in their journey of living with diabetes. As one participant explained his reason for social support:
“ . . . just to make sure that someone is with you, and it doesn’t mean you’re alone. It’s more of your personal burden to carry, but at least, maybe, you can get someone to support you.”
(35-year-old Black male, focus group 1)
Almost all participants agreed that having a group of individuals who are in various stages of diabetes management would help to alleviate some of the fears associated with the diagnosis and self-management of diabetes. One person said:
“I needed someone else who was in my shoes to tell me how he or she felt about being a diabetic patient.”
(27-year-old Black male, focus group 1)
At the community level, support could be in the form of financial assistance for individuals with diabetes who cannot afford their medications or healthy foods. Government organizations, nongovernmental organizations, churches, charity groups, and individual philanthropists could provide this much-needed community support for individuals with diabetes. As one person suggested:
“ . . . . [T]here’s a need now to bring more institutions in the programs. We need support from the government. We need support from churches. We need support from charity organizations.”
(35-year-old White female, focus group 2)
The participants were of the consensus that they needed social support to motivate them to perform all of the recommended self-management activities, especially eating healthfully.
Discussion
This study explored the experiences and perceived needs for immediate education and support of individuals newly diagnosed with type 2 diabetes. Five themes emerged: 1) type 2 diabetes diagnosis competes with other complex life challenges, 2) difficulty in performing behavior modification actions, 3) lack of support, 4) emergence of emotional and psychological issues, and 5) need for planned individualized follow-up support after a type 2 diabetes diagnosis. The findings of the study show a gap between the point of diagnosis and the point at which they are successfully carrying out self-management activities. Thus, there is a need for immediate support after a type 2 diabetes diagnosis.
The findings of this study align with previous work showing that people diagnosed with type 2 diabetes experience complex multiple transitions (21), and, in this study, participants also noted that attention to diabetes may be hampered by major life events around the time of diagnosis. Despite the challenges of balancing life with adjustment to having type 2 diabetes, it appears that, with busy primary care practices and short appointment times, it is difficult for both HCPs and individuals to have detailed conversations about barriers to self-management or for HCPs to provide adequate support. In a German qualitative study of the importance of social support for people with type 2 diabetes, HCPs reported that they were not knowledgeable about available community and social support groups that could assist people with their social challenges (22).
It is disappointing that, 9 years after the Diabetes Attitudes, Wishes and Needs study highlighted the need for psychosocial support for people with diabetes (23), health care systems are not structured to support this need. It is important to recognize that humans are complex beings with compelling problems that may make obtaining an optimal glycemic target a low priority or perhaps impossible. HCPs must go beyond delivering diabetes information and help to address patients’ personal concerns that may take priority over putting diabetes first (22,24).
People with newly diagnosed diabetes need to know that they do not need to change their lifestyle overnight. Knowing the undue pressure individuals put on themselves to swiftly modify some areas of their life, clinicians need not complicate things by giving complex or unclear instructions, as was stated by participants in this study. It is important to communicate key information about a desired self-management activity, as well as the personal relevance and significance of the activity as it related to diabetes management (24). Some participants in the study were monitoring their blood glucose without knowing the desired glycemic range or the relevance of their results. Yet, research has shown that using patient-generated data such as blood glucose values can empower behavior change (25). Therefore, people need to be told the importance of performing recommended diabetes activities and how doing so will contribute to their management of diabetes.
Despite numerous studies detailing the value of DSMES (10) and the demand for information among people with type 2 diabetes (26), people still are not being referred for DSMES, nor do they know where else to access reliable diabetes information. About one-third to half of the adult population in the United States have inadequate health literacy (27,28). Yet, most participants learned about diabetes on their own. However, because available information often is conflicting and may not be reliable, most people may not be able to use the information they acquire on their own, which raises health equity issues. Health literacy should be routinely assessed to provide the appropriate self-management learning method for each individual (29).
The lack of follow-up support experienced by individuals with type 2 diabetes is concerning (30). Participants with type 2 diabetes in a qualitative study conducted in the Netherlands shared that they experienced diabetes every day, as they had to take diabetes into consideration in everything that they did (31). The emergence of emotional and psychological issues stemming from challenges with self-management reflects the need to offer more support to people diagnosed with type 2 diabetes. As suggested by participants in this study, there is a need to provide structured follow-up support. This should not be undertaken with a one-size-fits-all approach.
Furthermore, the majority of participants said that they needed a period of 2–4 weeks to process their diagnosis and grieve their loss of health and lifestyle first. HCPs must acknowledge that grieving is part of the process of acceptance and might affect people’s willingness to participate in any diabetes-related activity soon after diagnosis (32,33). This phase of adjusting to life with diabetes must be factored into diabetes care protocols. People should be periodically assessed after diagnosis to determine their readiness to act and offer support based on their stage of readiness (34). Using questionnaires, surveys, or simple interviews after diagnosis can be a step in the right direction to help HCPs learn when to offer information and support.
Individualized initial follow-up appointments, as requested by the participants, are an opportunity to create a bond between individuals with diabetes and their HCP and perhaps reduce their fears associated with diabetes stigma. Individuals’ readiness for action should be assessed to determine the frequency and duration of needed ongoing support. People need a trusted HCP who understands the condition to guide them as they navigate their way to acceptance of the condition during the first few weeks after diagnosis.
A scoping review on the effects of task delegation on the quality of diabetes care revealed that support from nonphysician HCPs is equally effective in achieving glycemic outcomes and improving the quality of care (35). Specially trained nurses can give care that is equal to that provided by physicians for the management of chronic diseases (30,36). Thus, the task of providing immediate follow-up support after diagnosis can be allocated to nurses.
Given that participants suggested different frequencies for follow-up support, this issue should be determined by individual patients’ needs. For successful management, the health care team must be patient, supportive, and collaborative. Without proper support, many people give up. In addition, the use of electronic health records to monitor the progress of individuals newly diagnosed with type 2 diabetes may help to reduce the number of those lost to follow-up (37).
Participants suggested providing follow-up support for up to 6 months after diagnosis, but some said they were not sure that would be feasible. Even many who knew they would require support for a long time expressed their belief that they would not receive it from the health care system. However, if we truly want to support people with diabetes and reduce its long-term costs to society, such support should always be available. Living with diabetes can be lonely, and not all support must come from HCPs. Once HCPs have set people on the proper path for self-management, support groups can step in to assist with maintaining desired behavior changes (38). A cross-sectional study on social support and coping in 401 adults with type 2 diabetes revealed an inverse relationship between social support and emotional distress (39). To provide comprehensive support for people with type 2 diabetes, more social support options must be identified and made available.
Limitations and Strengths
The findings of this study are based solely on what participants chose to share and not on independent observation. The COVID-19 pandemic might have influenced the experiences of individuals diagnosed with type 2 diabetes in 2020 and 2021, the period associated with the findings described in this article. There is also a chance that participants could have had recall bias. In addition, participants were highly educated; thus, the support needs of people facing a higher level of health disparity might not have been discussed. Despite these limitations, the sample size for this qualitative study was large enough to achieve its purpose. The inductive thematic analysis approach ensured that themes generated reflected the self-management and psychosocial support needs of individuals newly diagnosed with type 2 diabetes.
Implications for Practice and Research
This study revealed that individuals experience significant challenges after a type 2 diabetes diagnosis. Lives are complicated, and diabetes is not the only issue people face. HCPs require ample appointment time to inquire about the issues most important to each person to provide the most effective forms of support. Special attention should be paid to individuals with multiple challenges. Individualized follow-up support is recommended to meet the needs of people newly diagnosed with type 2 diabetes. Furthermore, HCPs should refer people for DSMES, through which they will participate in multiple comprehensive, structured diabetes education sessions and receive support as new needs emerge over time. Peoples’ needs evolve, so HCPs must provide and ensure the provision of continuous support and also connect individuals to other support resources such as peer support groups and online diabetes communities.
Future research is needed to determine the feasibility of providing continuous individualized follow-up support immediately after a type 2 diabetes diagnosis in the primary care setting. There is also an urgent need to find the best ways to identify individuals’ specific concerns after diagnosis. More research is needed to understand the support needs of those from socially disadvantaged backgrounds. Future studies should also explore how support needs after the emergence of psychological and emotional challenges may differ from the initial support needs of individuals immediately after their diagnosis.
Conclusion
Diabetes self-management after a type 2 diabetes diagnosis is challenging, and people’s ability to manage the condition may be hindered by other major life events. Therefore, HCPs must provide individualized support to deal with personal barriers that may inhibit a smooth transition into successfully performing self-care activities. The findings of the study underscore a current lack of individualized support in treatment protocols to help individuals gradually adjust to their diagnosis. Immediate psychosocial and self-management support is needed after a type 2 diabetes diagnosis to enable individuals to transition successfully to living well with diabetes.
Article Information
Acknowledgment
The authors thank the study participants for sharing their experiences.
Funding
The research reported in this article was supported by The Pennsylvania State University Ross and Carol Nese College of Nursing Laurie Gunter Research Fund.
Duality of Interest
No potential conflicts of interest relevant to this article were reported.
Author Contributions
M.D.S.B. designed the study and was responsible for data collection and management under the supervision of S.M., D.G., J.K., K.V.H., and M.B. M.D.S.B. wrote the manuscript. S.M. and D.G. contributed to the analysis and discussion and edited the manuscript. J.K. reviewed the manuscript and contributed to discussion. K.V.H. contributed to the analysis and reviewed the manuscript. M.B. contributed to the analysis and discussion and reviewed the manuscript. M.D.S.B. is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
