A Study of Young Adults' Perspectives of Type 1 Diabetes
A Study of Young Adults' Perspectives of Type 1 Diabetes
This study helps to address the lack of research on the causes of diabetes-related distress in young adults in their 20s. Quantitative research suggests that diabetes distress is an important issue in this age group. The utility of the study's findings are that they provide a list of topics that healthcare professionals can use to start dialogues with these young people.
A range of sources of distress were identified by this project, including: stigma/self-consciousness; concerns about Type 2 diabetes; day-to-day management difficulties; struggles with the healthcare system; fears about the future; negative media portrayals of diabetes; and concerns about pregnancy.
Previous research has identified several of these factors as being distressing to people with Type 1 diabetes, though not necessarily to young adults in their twenties. People with diabetes have been noted to become distressed when they feel restricted or disadvantaged. Many find the unremitting nature of day-to-day management to be emotionally difficult. A number of young adults feel awkward managing their diabetes around other people and a minority appear to fear that other people will not accept them. As noted, some interviewees in this study were either concerned that they would be stigmatized for having Type 1 diabetes, or concerned that they would be mistakenly stigmatized for having Type 2 diabetes. Several young adults themselves appeared to stigmatize other people with Type 2 diabetes. Schabert et al. note that diabetes-related stigma-whatever its source- can have significant negative impacts on people with diabetes' psychological well-being. The findings here suggest that stigma is not only a serious problem itself, it can also discourage young adults from seeking help for diabetes-related distress; one female interviewee, for example, noted that she would not join Facebook support groups in order to protect her identity.
Young adults' concerns about being mistaken for having Type 2 diabetes likely reflect wider negative social understandings of Type 2 diabetes as a 'ticking time-bomb', and people who develop Type 2 diabetes as risky, uncontrolled and obese subjects. It was evident that interviewees were anxious that the general public would be unable to differentiate between Type 1 and Type 2 diabetes. Interviewees' anxieties here could have been further accentuated by the fact that many young women with Type 1 diabetes appear to experience increases in their body mass index as they transition through their twenties. These young women may therefore feel that if other people see someone with a 'large' body, and associate that body with the word 'diabetes', they will assume that the young person has developed diabetes as a result of an inability to self-regulate. It was notable as well that some young people felt that people with Type 1 diabetes were competing for resources with people with Type 2 diabetes. Competition for scarce economic resources often intensifies stigmatization processes and may have contributed to some interviewees' hostility towards people with Type 2 diabetes.
Fears about the future have previously been found to hang over the heads of some young people with diabetes like a 'sword of Damocles'. Complications can be distressing not only in and of themselves, but also because they can undermine young adults' life plans and career aspirations. Young adults have also been noted to be concerned about the complicating impacts of diabetes on pregnancy. Other studies have indicated that young adults can become very distressed at hypoglycaemia, though this was something that we did not detect to any great extent in this study. The young adults who we interviewed reported being much more anxious about developing hyperglycaemia than they were about 'going low'. Young adults' developmental position may help to explain some of these findings. As noted, the young adults in this study were in the second, 'stabilizing' phase of young adulthood. Previous theoretical research suggests that young people in this age range become increasingly concerned about their diabetes management. They tend to lose their adolescent sense of invulnerability. Simultaneously, they are transitioning from young adult to adult health services where they are either sometimes beginning to develop diabetes-related complications themselves, or beginning to see the consequences of such complications in other people. They desire to build positive relationships with healthcare providers and engage with their healthcare system. This theoretical work would suggest that fears about the future become increasingly salient for individuals in this age group, more than anxieties about short-term complications, as would fears about pregnancy (young adults in their twenties would be at an age where they would seriously be beginning to consider having children, with all of the risks and complications that entails). It would also suggest that young adults- who wish to engage with health services in order to improve their control and to reduce their risk of developing complications- would become distressed if they perceive services to be unresponsive to their needs.
Overall, the findings of this study indicate that individuals in the second phase of young adulthood can experience significant diabetes-related emotional struggles. However, clinicians have often not paid the same attention to the emotional problems of these individuals as they have to their younger counterparts, those in their late teens and early 20s. 'Older' young adults in their mid to late 20s are often treated in adult services where psychological support is absent, where continuity of care is lacking and where interactions with professionals are focused on HbA1c scores and other clinical measures. It was notable in this study that although participants experienced diabetes-related distress, they also generally had reasonably good diabetes control. Although we cannot state this point definitively (as the study is based exclusively on patient perceptions of healthcare professionals' practices), it may be that some clinicians and other professionals are briefly interacting with these young adults, seeing reasonably good HbA1c scores, thinking that everything is acceptable, and moving on to the next patient; or are aware of distress in this group but do not feel that that they have the time or the expertise to deal with these issues within the context of regular clinical appointments. It may therefore be that distress in more 'successful' young adults such as the ones in this study is either being elided or bracketed by some professionals.
It is important that healthcare professionals address diabetes-related distress in young adults with Type 1 diabetes, particularly given that distress is associated with poor clinical outcomes in many patients – though there are subsets of patients for whom distress may have beneficial impacts upon self-care, possibly by encouraging young adults to regulate themselves in order to reduce feelings of anxiety. Gonzalez et al. suggest that the best way for professionals to manage diabetes distress may simply be to have brief, direct and ongoing conversations with patients. Finding the time to do so may be difficult in the context of a typical clinical appointment; nevertheless it is important. The findings of this study also suggest that it could be important to offer young adults opportunities to attend structured diabetes education programmes and provide them with access to technologies that they can use to improve their control such as CSII. All of these suggestions come with cost and resource implications. A number of researchers have indicated that an efficient way of helping young adults to manage distress may be by helping them to develop and maintain peer support networks. However the findings of this study indicate that volunteer-led peer support groups should not be seen as a way to provide young adults with 'free' social support. These groups require resources and inputs from volunteers, even if it is just in terms of their time and effort. It is unclear how resilient these peer-support networks will be over time without support (money/training/encouragement) from the official health system. The young adults who run them will grow older, and possibly less willing to supply peer-support to younger adults who are experiencing issues that they have 'grown out' of. Finally, the findings of this study suggest that it may be useful for clinicians and diabetes researchers to engage with the media to ensure that representations of diabetes are not overwhelmingly negative, and that Type 1 and Type 2 diabetes are sufficiently differentiated.
The main limitation of the study is the self-selected nature of the young adult sample (as Table 1 highlights most of the sample was composed of educated young women with reasonably good control). Another limitation was that the sample was recruited from Facebook and may reflect a particularly engaged cohort of young people (those engaged with their diabetes to seek Internet support or information). Some of the solutions to diabetes distress that respondents proposed, such as peer support groups, may not be relevant for other individuals for whom interacting with peers with diabetes is not so important. We did not assess the intensity of young adults' diabetes-related distress; some young adults who felt angry at Type 2 diabetes might have been very angry at Type 2, others 'merely' annoyed. It is difficult to definitively state if, and if so how, the interviewer's identity impacted the information that was disclosed in the interviews. However it may have been that some very sensitive issues, such as distress arising as a result of psychosexual issues or eating disorder behaviours, were not revealed to the male interviewer by the predominantly female group who took part in this project.
Discussion
This study helps to address the lack of research on the causes of diabetes-related distress in young adults in their 20s. Quantitative research suggests that diabetes distress is an important issue in this age group. The utility of the study's findings are that they provide a list of topics that healthcare professionals can use to start dialogues with these young people.
A range of sources of distress were identified by this project, including: stigma/self-consciousness; concerns about Type 2 diabetes; day-to-day management difficulties; struggles with the healthcare system; fears about the future; negative media portrayals of diabetes; and concerns about pregnancy.
Previous research has identified several of these factors as being distressing to people with Type 1 diabetes, though not necessarily to young adults in their twenties. People with diabetes have been noted to become distressed when they feel restricted or disadvantaged. Many find the unremitting nature of day-to-day management to be emotionally difficult. A number of young adults feel awkward managing their diabetes around other people and a minority appear to fear that other people will not accept them. As noted, some interviewees in this study were either concerned that they would be stigmatized for having Type 1 diabetes, or concerned that they would be mistakenly stigmatized for having Type 2 diabetes. Several young adults themselves appeared to stigmatize other people with Type 2 diabetes. Schabert et al. note that diabetes-related stigma-whatever its source- can have significant negative impacts on people with diabetes' psychological well-being. The findings here suggest that stigma is not only a serious problem itself, it can also discourage young adults from seeking help for diabetes-related distress; one female interviewee, for example, noted that she would not join Facebook support groups in order to protect her identity.
Young adults' concerns about being mistaken for having Type 2 diabetes likely reflect wider negative social understandings of Type 2 diabetes as a 'ticking time-bomb', and people who develop Type 2 diabetes as risky, uncontrolled and obese subjects. It was evident that interviewees were anxious that the general public would be unable to differentiate between Type 1 and Type 2 diabetes. Interviewees' anxieties here could have been further accentuated by the fact that many young women with Type 1 diabetes appear to experience increases in their body mass index as they transition through their twenties. These young women may therefore feel that if other people see someone with a 'large' body, and associate that body with the word 'diabetes', they will assume that the young person has developed diabetes as a result of an inability to self-regulate. It was notable as well that some young people felt that people with Type 1 diabetes were competing for resources with people with Type 2 diabetes. Competition for scarce economic resources often intensifies stigmatization processes and may have contributed to some interviewees' hostility towards people with Type 2 diabetes.
Fears about the future have previously been found to hang over the heads of some young people with diabetes like a 'sword of Damocles'. Complications can be distressing not only in and of themselves, but also because they can undermine young adults' life plans and career aspirations. Young adults have also been noted to be concerned about the complicating impacts of diabetes on pregnancy. Other studies have indicated that young adults can become very distressed at hypoglycaemia, though this was something that we did not detect to any great extent in this study. The young adults who we interviewed reported being much more anxious about developing hyperglycaemia than they were about 'going low'. Young adults' developmental position may help to explain some of these findings. As noted, the young adults in this study were in the second, 'stabilizing' phase of young adulthood. Previous theoretical research suggests that young people in this age range become increasingly concerned about their diabetes management. They tend to lose their adolescent sense of invulnerability. Simultaneously, they are transitioning from young adult to adult health services where they are either sometimes beginning to develop diabetes-related complications themselves, or beginning to see the consequences of such complications in other people. They desire to build positive relationships with healthcare providers and engage with their healthcare system. This theoretical work would suggest that fears about the future become increasingly salient for individuals in this age group, more than anxieties about short-term complications, as would fears about pregnancy (young adults in their twenties would be at an age where they would seriously be beginning to consider having children, with all of the risks and complications that entails). It would also suggest that young adults- who wish to engage with health services in order to improve their control and to reduce their risk of developing complications- would become distressed if they perceive services to be unresponsive to their needs.
Overall, the findings of this study indicate that individuals in the second phase of young adulthood can experience significant diabetes-related emotional struggles. However, clinicians have often not paid the same attention to the emotional problems of these individuals as they have to their younger counterparts, those in their late teens and early 20s. 'Older' young adults in their mid to late 20s are often treated in adult services where psychological support is absent, where continuity of care is lacking and where interactions with professionals are focused on HbA1c scores and other clinical measures. It was notable in this study that although participants experienced diabetes-related distress, they also generally had reasonably good diabetes control. Although we cannot state this point definitively (as the study is based exclusively on patient perceptions of healthcare professionals' practices), it may be that some clinicians and other professionals are briefly interacting with these young adults, seeing reasonably good HbA1c scores, thinking that everything is acceptable, and moving on to the next patient; or are aware of distress in this group but do not feel that that they have the time or the expertise to deal with these issues within the context of regular clinical appointments. It may therefore be that distress in more 'successful' young adults such as the ones in this study is either being elided or bracketed by some professionals.
It is important that healthcare professionals address diabetes-related distress in young adults with Type 1 diabetes, particularly given that distress is associated with poor clinical outcomes in many patients – though there are subsets of patients for whom distress may have beneficial impacts upon self-care, possibly by encouraging young adults to regulate themselves in order to reduce feelings of anxiety. Gonzalez et al. suggest that the best way for professionals to manage diabetes distress may simply be to have brief, direct and ongoing conversations with patients. Finding the time to do so may be difficult in the context of a typical clinical appointment; nevertheless it is important. The findings of this study also suggest that it could be important to offer young adults opportunities to attend structured diabetes education programmes and provide them with access to technologies that they can use to improve their control such as CSII. All of these suggestions come with cost and resource implications. A number of researchers have indicated that an efficient way of helping young adults to manage distress may be by helping them to develop and maintain peer support networks. However the findings of this study indicate that volunteer-led peer support groups should not be seen as a way to provide young adults with 'free' social support. These groups require resources and inputs from volunteers, even if it is just in terms of their time and effort. It is unclear how resilient these peer-support networks will be over time without support (money/training/encouragement) from the official health system. The young adults who run them will grow older, and possibly less willing to supply peer-support to younger adults who are experiencing issues that they have 'grown out' of. Finally, the findings of this study suggest that it may be useful for clinicians and diabetes researchers to engage with the media to ensure that representations of diabetes are not overwhelmingly negative, and that Type 1 and Type 2 diabetes are sufficiently differentiated.
The main limitation of the study is the self-selected nature of the young adult sample (as Table 1 highlights most of the sample was composed of educated young women with reasonably good control). Another limitation was that the sample was recruited from Facebook and may reflect a particularly engaged cohort of young people (those engaged with their diabetes to seek Internet support or information). Some of the solutions to diabetes distress that respondents proposed, such as peer support groups, may not be relevant for other individuals for whom interacting with peers with diabetes is not so important. We did not assess the intensity of young adults' diabetes-related distress; some young adults who felt angry at Type 2 diabetes might have been very angry at Type 2, others 'merely' annoyed. It is difficult to definitively state if, and if so how, the interviewer's identity impacted the information that was disclosed in the interviews. However it may have been that some very sensitive issues, such as distress arising as a result of psychosexual issues or eating disorder behaviours, were not revealed to the male interviewer by the predominantly female group who took part in this project.