Type 1 diabetes (T1D) is a heterogeneous disease condition associated with destruction of pancreatic beta cells and life-long dependence on exogenous insulin. It is a clinical condition mostly diagnosed in children and young adults and T1D accounts for about 5-10% cases of diabetes worldwide (Diabetes UK 2016). In contrast to T1D, Type 2 Diabetes (T2D) is more prevalent condition associated with combination of insulin resistance and poor insulin secretory response. 90% of people with diabetes comprise T2D and 10% of them are found to diagnosed with T1D (Maahs et al. 2010). However, T1D is more common in children and young people. Several government and national statistics indicates the prevalence of T1D among youths. According to Diabetes UK (2016), peak age for T1D diagnosis is 10-14 years and the prevalence rate in children and young people under 19 is one per 430-530 individual.
The risk factors for T1D and T2D are different. T1D occurs because of the damage of insulin producing cells in the pancreas where T2D occurs when insulin is not being produced adequately. T1D accounts for 85% of all diabetes cased in youth globally. The incidence rate is found to peak during the pubertal age (10-14 years) and it starts to decline during young adulthood period (15-29 years) (Maahs et al. 2010). As T1D is most likely to occur during childhood, it is also known as juvenile diabetes (You and Henneberg 2016). Another alarming statistics is that 15-20% of new diagnoses are mostly found in children less than 5 years. The management of diabetes becomes a challenge in children and adolescents because of cognitive, behavioural and socio-emotional development. Adhering to medication regimen is an issue and the burden of care mostly comes on parents on young children. Parents are responsible for frequent blood glucose monitoring, diet regulation and insulin administration (Streisand and Monaghan 2014). Hence, developmental period of very young children creates unique challenges for caregivers. In case of adolescents, they experience many obstacles to adherence because of developmental changes, family dynamics, interruption to teen’s life and social pressures. Adherence to diabetes treatment is critical to maintain glycemic control and reduce further complications in teenagers. However, adherence to diabetes regimen is most difficult for adolescents because of other complex factors of treatment. Reviewing research literature to understand these complex factors is necessary to extend right support to adolescents with T1D (Borus and Laffel 2010).
T1D is a chronic disease condition and public health agencies focus a lot on self-management to improve health of the population. The Centers for Disease Control and Prevention (CDC) is committed to establishing evidence based strategies to prevent disease or disbility in population (Brady, Anderson and Kobau 2015). However, in the context of management of T1D, implementing self-management strategies for adolescents is very challenging due to developmental issues and poor attitude of adolescent towards following complex medication regimen. Hence, to provide appropriate self-management support to adolescents, understanding factors that lead to challenges in self-management of Type 1 diabetes across adolescence is important. The main rational for conducting critical literature review on barrier to self-management of T1D among adolescents is to build knowledge related to influence of various factors specific to adolescent stage that influence self-management. Evaluation and critical analysis of research findings will help to identify various variables that can influence self-management and development appropriate self-management support strategies to improve quality of life of adolescents affected by T1D (Morse 2015).
The main aim of the literature review is to understand barriers or challenges related to the self-management of type 1 diabetes in adolescents.
By conducting critical analysis of research literature, the main objectives of the literature review are as follows:
A literature review analyses all scholarly sources, books and research articles that are relevant to the research topic. Development of appropriate search strategy determines the success of literature review project and the likelihood of getting relevant research literatures (Hart 2018). The search strategy starts by identify key words from the research question. The research question for this literature review is- ‘What are the issues or challenges in the self-management of T1D among adolescents?’.
The key words that were identified from the research questions include ‘challenges or issues’, ‘self-management’, ‘T1D’ and T1D in ‘adolescents or teenagers’. After identifying keywords from the research question, the next step is to select relevant database and resource to retrieved appropriate articles for the review (Aromataris and Riitano 2014). As research is based on health care related issues, databases publishing research in the field of biomedical and health care were taken for searching articles. The databases included CINAHL, PubMed and Medline. The search process was filtered by setting data of publication to 2008-2018 and the changing the publication type to peer reviewed articles. The keywords and search terms were also combined with Boolean operators like ‘AND’ and ‘OR’. ‘OR’ was used to arrange keywords similar in meanings such as adolescent OR teenagers, challenges OR issues. The Boolean operator ‘AND’ was used to separate search terms different in meanings such as self-management ‘AND’ T1D. The above mentioned search terms were entered in this process to retrieve research articles and determine its eligibility for the literature review.
The eligibility criteria for the selection of articles were as follows:
After retrieving research articles based on eligibility criteria and the above mentioned search strategy, the data obtained from research articles were analyzed by means of thematic analysis method. Themes were generated from the research findings and these were presented to enhance interpretation of research findings. Thematic analysis supports in identifying patterns and meaning from extracted data sources (Braun, Clarke and Terry 2014). Another rational for choosing thematic analysis method for data interpretation is that the research question mainly deals with analysis of qualitative data such as feelings or perceptions related to challenges in diabetes self-management. Hence, thematic analysis is the appropriate method to identify patterns or meanings within qualitative data. Different themes have been used in this paper to address the research question and find gaps and strength in past research done on the topic.
Importance of self-management in the management of diseases
Prevention and management of chronic illness is a major focus of health care providers today. Disease management approaches are changing and currently the responsibility of individual with chronic disease in guiding their care is being encouraged. Self-management skills is regarded an important patient-centric strategies to deal with chronic diseases (Grady & Gough, 2014). Various evidences have proved the benefits of self-management strategies in disease management and improving quality of life (Cramm and Nieboer 2015). Cramm and Nieboer (2015) argues that self-management interventions helps to fulfil the demands of patient-centred care system and it enables patient get equipped with all information and skills necessary to individually manage care and health care outcomes. According to Dwarswaard et al. (2016), self-management support is crucial to empower patients to engage in goal setting, personalized care planning and problem solving process. Self-management abilities of a patient are understood from the assessment of their self-efficacy and initiative taking tendency during disease management. Schulman-Green et al. (2012) supports the fact that self-management can help direct interventions and promote positive health outcomes for individual with chronic illness. Self-management involves learning about health needs, recognizing body responses and taking ownership of health needs, engaging in health promotion activities and activating resources for health promotion.
Barriers to self-management of type 1 diabetes in adolescents:
Social barrier to self-management
Large number of studies reveal adherence to T1D therapy as the most common barrier to self-management of T1D in adolescents (Datye et al. 2015; Palladino and Helgeson 2012). Datye et al. (2015) reviewed barriers to adherence in adolescents with T1D and summarized various factors such as parental monitoring, peer influence, psychosocial barrier and poor communication with care providers as playing a role in diabetes self-management. Palladino and Helgeson (2012) individually reviewed about peer influence, self-care and glycemic control by selecting many qualitative studies related to the topic. The review result showed that majority of adolescents had the perception that their peers influence their self-care behaviour. However, the limitation of the findings was that mixed evidence was found for association between peer support and glycemic control and the evidence left many questions to be unanswered as distinction between friends and peers was not done. Primary qualitative data was needed to discover the essence of peer response to diabetes self-management among adolescents.
Yang et al. (2018) recently conducted a qualitative study to perceive the impact of peer response on adolescence with T1D. The analysis of transcribed interview data revealed both negative and positive impact of peer response on adolescent’s self-management. Participant’s interview response revealed that peers who observe their friend injecting insulin collect more information about the disease and share it with their friends. Feelings of curiosity were also found among peers as they had never seen glucometer and insulin syringes before. This leads to feelings of empathy and positive coping style among diagnosed adolescents (Lu et al. 2015). However, negative response of peers created challenges for patients too. For example, peers developed fearful feeling as they had false perception about being infected by T1D. This affected relationship with research participants. Feeling of isolation and experience of bullying were also expressed as some of the barrier to self-management. Hence, Yang et al. (2018) identified both negative and positive themes related to impact of peer influences. Yang et al. (2018) used purposive sampling strategy. However, selection bias might have occurred as the research was done only in one medical centre. Despite the methodological limitation, the finding is consistent with other research literature as Amillategui et al. (2009) explained that peer support significantly influence self-management outcome of adolescents with T1D. Berlin et al. (2015) states that exclusion by peers increases negative coping styles in adolescents and gave the direction that promoting peer relationship in school and health care setting is crucial to improve quality of life of teenagers diagnosed with T1D.
Berlin et al. (2015) believed that adherence is difficult for adolescents in many social situations because of fear of negative evaluation by others. By conducting a qualitative study with youths with T1D, Berlin et al. (2015) revealed impact of negative reactions from peers on adherence, difficulty, stress and gylcemic control. The peer’s reaction towards their friend’s diagnosis of T1D was done by the Friend and Peers Attribution Questionnaire. Internal consistency and reliability of the questionnaire was discussed with support from research evidences. This indicates about the quality and credibility of the data obtained from the research. The questions where related to social situations in which researcher participants experience challenges with an adherence situation. The research outcome revealed that negative attribution of peers increases diabetes related stress and gylcemic levels in adolescents. Berlin et al. (2015) did not distinguish between friend and peers. However, this distinction was important because relationship with close or peer may differ and this may significantly influence negative attribution effects. Future research in this area may promote implementation of social support intervention to correct youth’s perception of their social audience. If peer relationship is the main barrier behind self-management skills in adolescents, then strategies like advising teenagers how to choose which peers and how to deal with negative reactions from peers would enhance coping skills and self-esteems of youths affected by T1D (Palladino and Helgeson 2012).
In the context of social barriers to self-management, cultural barriers also have an impact on self-management ability of teenagers. Rebolledo and Arellano (2016) emphasized on considering cultural differences while initiating insulin therapy because of difference perceptions of people regarding insulin in people from different racial and cultural background. One of the qualitative research evidence gave an insight into the challenges in T1D management because of racial-ethnic disparities. Willi et al. (2015) explored racial/ethnic disparities in T1D outcome by recruiting racially diverse samples groups like non-Hispanic white, non-Hispanic black and Hispanic participants. The research outcome revealed several disparities in treatment regimen as insulin pump use was found to be higher in black that in white or Hispanic participants. Elevated blood glucose level and less frequent blood glucose monitoring was also found to be higher in black participants. Hence, socioeconomic factors played a major role in contributing to differences in outcome between white and Hispanic youth. The strength of the study is inclusion of diverse racial cohort and collection of extensive data from the sample group (Yang and Land 2016). It also gives important clinical implications to health care professionals regarding considering patient’s perceptions and preferences while planning treatment regimen for adolescents with T1D.
Treatment or regimen specific barrier to self-management:
Insulin pump became a major part of T1D therapy after the availability of rapid acting insulin increased in the mid 1990s (Maahs, Horton and Chase 2010). By investigating about the use of insulin pump therapy in youths with T1D, Maahs, Horton and Chase (2010) indicated that rigidity of criteria for initiating insulin pump therapy can be one of the regimen specific barriers to self-management. By review of insulin pump use, the researcher defined several advantaged and disadvantaged of insulin pump therapy. Insulin pump use is associated with improve glycemic control, insulin availability, ease of adjusting dose with exercise and control of post meal sugar values. However, review of research literature has revealed several barriers to optimal use of insulin therapy among adolescents with T1D.
Wisting et al. (2016) investigated about the psychological barriers to insulin therapy in adolescents. The research hypothesis was that females would have more negative illness perception than males. By collecting response from participants related to illness perceptions, coping orientation and beliefs about T1D medicines, the quantitative analysis revealed that females had significantly higher negative perceptions of T1D compared to males. In addition, negative view was found for those research participants who used insulin pen compared to insulin pump. The significance of the study is that it points out to gender difference in illness perception and coping strategies. This is true for all kinds of chronic illness as Edelstein et al. (2012) and Pesut et al. (2014) gave the evidence regarding difference in perceptions of males and females regarding various disease. The study by Wisting et al. (2016) is the first study to show gender difference for insulin therapy in adolescents. The reliability of the study is high because participants were recruited from hospitals across a large geographic area in Norway. The study gives important clinical implications for barrier to insulin therapy use among adolescents. Addressing insulin concerns in young males and females is important to address the problem of insulin restriction and eating disorder psychopathology in adolescents with T1D. Wisting et al. (2017) reported about poorer metabolic control and increased morbidity in adolescents because of insulin restriction.
Review of research literatures also reveals eating disorder as a barrier to self-management in adolescents with T1D. The prevalence of eating disorder is two-three times more likely in adolescents with T1D compared to other peers who do not have T1D. As eating behaviour can significantly influence insulin administration and metabolic control, Wisting et al. (2017) aimed to investigate whether eating patterns in adolescents is associated with eating disorder pathology and metabolic control in adolescents or not. The results of the interview based study revealed that female adolescents consume breakfast less frequently than males and this has an impact on appetite regulation and metabolic control of adolescents. Inverse relationship was found between binge eating and frequency of breakfast consumption. Harvey et al. (2011) supports the argument by stating that breakfast skipping is normative among adolescents and it increases the risk of binge eating. Hence, Wisting et al. (2017) gives the implication regarding assessment of psychological barriers to optimise insulin therapy among adolescents. The reliability of the study is understood from the use of the Child Eating Disorder Examination (ChEDE), which is an investigator based global score that comprises that provides index related to eating disorder psychopathology. Wisting et al. (2017) discussed about the psychometric properties and the internal consistency of the scale to promote transferability of the work. Hence, the research evidence is a credible piece of work that can be used by health care professionals.
Psychosocial barrier to self management
The above mentioned discussions clearly show that self-management skill is an important strategy to improve health of the population and manage chronic diseases like T1D. However, the exploration of research studies related to T1D self-management in adolescents defines various barriers to self-management process. By means of a quantitative research design, Mulvaney et al. (2011) gave idea about psychosocial self-management barriers to T1D self-management. Adolescents between 10-17 years participated in an internet based intervention. Semi-structured interview were done with participants and frequency of online activity was monitored. The review and analysis of interview response revealed social issues, psychological problems, time pressures and forgetfulness as some of the barriers in self-management. Burnout, stress and impulsivity were some psychological reasons for not using self-management techniques. However, with the use of multi-media story, participants were able to resolve their self-management problems. The strength of the study is that it highlights the potential of multi-media story on improving adolescent’s motivation to self-management. Khan et al. (2011) supports the view by proving the effectiveness of multi-media technology on increasing user’s adherence with diabetes therapy. However, small sample size and lack of utilization of the intervention in a large forum are the limitations of the work. Transparency issue has been also found as sources and credibility of the media story was not revealed (Westerman, Spence and Van Der Heide 2014). Addressing these aspects in future research can improve the application of findings for adolescents with T1D.
Self-management in adolescents with T1D is a multi-dimensional phenomenon and an evolving process where parents play a crucial role in incorporating self-management skills in adolescents (Lozano and Houtrow 2018). Castensøe?Seidenfaden et al. (2017) has emphasized on this concept by a qualitative study using visual storytelling as a research design to explore adolescent’s perspective on living with T1D and managing it. A semi-structured interview guided by participant’s photo indicated four themes for adolescents and parents. These included striving for safety, striving for normality, striving for independence and worry about future. Adolescents wanted to be in control of T1D. However, fear of hypoglycaemia during sports and parties were a concern for adolescents. Many adolescents also regarded demand for self-management as a burden because of perceptions of feeling different from their peers. Hence, normality was not found as adolescents did not integrated T1D into their lives. This is supported by Markowitz et al. (2015) as he revealed that depressive symptoms are twice more likely in youths with diabetes compared to the general population. Adolescents wanted to be independent in self-management, however several obstacles such as lack of knowledge and parental support increased challenges for them. The evidence is credible and transferable in other settings because of the use of strong research methodology. Purpose sampling was suitable for the research aim and six phase of thematic analysis ensured trustworthiness and transparency in the research work (Connelly 2016). Hence, the evidence can be applied to improve coping style and burden faced by adolescents in self-management of T1D.
Rechenberg et al. (2017) believed that the type of coping style adopted by adolescents determine their efficacy in the self-management of T1D. The research work of Jaser et al. (2013) can explain the reason behind adolescent’s perception of regarding self-management of T1D as a burden. Jaser et al. (2013) examined the relation between stress and coping on glycemic control in adolescents with type 1 diabetes by the use of Response to Stress Questionnaire (RSQ), Type 1 Diabetes Version. The tool was used to rate 10 types of diabetes related stress with 0-30 scores. One of the common findings for all the adolescents included diabetes-related stress and the most common stressor was diabetes care. Adolescent’s also reported parental bugging about self-care. In response to the assessment of coping styles, the study revealed that primary control coping (example-problem solving) and secondary control coping (positive thinking) was associated with fewer problems for adolescence and negative coping strategies like avoidance increase problems and deteriorated quality of life of research participants (Jaser et al. 2013). Hence, the way adolescents respond to T1D can have important implications on physiological and psychosocial adjustment. The use of longitudinal study design helped to analyse coping styles in details. However, sample recruitment strategies is one major limitation of the study as most of the samples has good gylcemic control and recruiting more number of participants with poor A1C would have given real idea regarding stressors. Irrespective of these limitations, the study shows the significance of secondary coping styles like acceptance, distraction and positive thinking on self-management skills of adolescents. Jaser and White (2011) supports the benefit of secondary coping style by showing that such styles increases social competence, metabolic control and quality of life in adolescents.
Individual or people focused-barrier to self-management:
Yi-Frazier et al. (2015) defined the role of personal resilience on coping and diabetes related outcomes in adolescents with T1D. The variables used for measuring personal resilience in research participants is the strength of the study as the variable represented factors that define personal resilience in an individual (such as self-efficacy, self-esteem and optimistic thinking). Other secondary variables like diabetes related stress, quality of life and self-care was also measured. The review of the study findings reveal an association between time of diabetes diagnosis and resilience score as those with resilience scores were found to be diagnosed with diabetes from a longer time. Positive correlation between diabetes related stress and personal resilience was also found. Hence, the study gives implications for improving resilience and stress to promote self-management skills in adolescents. Yi-Frazier et al. (2015) shows that promoting personal resilience can a promising strategy to reduce stressors for adolescents with T1D and improve their self-care skills and glycemic outcome. By highlighting the role of personal resilience in self-management, the study gives direct for future research in the area of people-focused intervention to improve resilience in adolescents. From the methodological perspective also, the work is of high credibility as each outcomes variables have been measured with the use of validated research tools. Cal et al. (2015) identified with Yi-Frazier et al. (2015) by explaining that resilience interferes in the disease process and interventions for resilience can promote improving patient’s capacity.
In the area of person-centred or personal barrier related to the role of self-management in adolescents with T1D, the influence of development process in self-management outcome of adolescents has been found. Miller et al. (2012) reported about the role of changes in executive function to diabetes self-management in youths between 9-11 years by a 2 years prospective study design. The review of executive function change and self-management skills with time revealed that changes in self-management, global executive functioning, behavioural regulation and HbA1C with time. Behavioural regulation decreased, youth reported self-management decreased and HbA1c decreased. Very few studies have investigated about the role of executive function and changes in self-management overtime. Miller et al. (2012) work of critically examining rate of growth in executive functioning suggests that this factor influence self-management capabilities of adolescents. The researcher measures executive functioning using the Behavior Rating Inventory of Executive Functioning (BRIEF) tool and it included behaviour regulation and meta-cognition index too. The reliability, internal consistency and validity of the BRIEF tool were justified by Miller et al. (2012) which enhanced the credibility of the work. Hence, the study gave useful finding that better behavioural regulation can improve self-management skills of adolescents. Sell et al. (2016) suggested a contrasting idea that to improve self-management skills of adolescents, evaluating client’s attitude towards health behaviour change is necessary. To implement the suggestion, it would be necessary to identify strategies that can help in changing negative attitude towards behavioural change and disease management in adolescents.
Diagnosis of diabetes is associated with profound stress for family members. Cooperation from both parents and children are needed to properly manage the disease and achieve glycemic control. However, parenting stress or family stress negatively impairs young adolescents behaviours related to T1D management (Sweenie, Mackey and Streisand 2014). Research evidence disentangled the role of parental monitoring and family stressors in adolescent’s management of T1D. Hilliard et al. (2013) investigated about the frequency of parental monitoring on adolescent’s diabetes self-care. The quantitative study revealed inverse relationship between family conflict and diabetes self-management. The evidence can be utilized by intervention and preventions programs by encouraging parental monitoring to maintain health of adolescents with T1D. It may help to address psychological symptoms of stress and depression in T1D adolescents too. Although lack of analysis of causal inferences limits the transferability of the evidence, however the evidence gives direction to adapt multi-dimensional approach by including parents in interventions related to support for diabetes self-care. Family-focused intervention has the potential to reverse the trajectory of deteriorations in self-care in adolescents and increase their quality of life. Family focused interventions are novel way to encourage adolescents to manage daily T1D treatment regimens like insulin administration, multiple glucose checks and coordination with dietary intake (Wu et al. 2013).
Outcome of self-management interventions on adolescents with T1D:
Self-management support or interventions can be given in various formats and setting. For example, it can be delivered via telephone, online format, one-to-one discussion and small group. The setting for the intervention can be home, health care clinic, community centres and health promotion centres. Irrespective of the form and format, the main goal of such intervention is to support people to acquire skills and confidence required to live well with chronic disease conditions (Brady, Anderson and Kobau 2015). The importance of self-management interventions can be understood from the outcome of such interventions of health outcome of people with T1D. Many research studies explored the effectiveness of different forms of self-management interventions for teenagers with T1D and the utility and credibility of these work has been discussed below.
A quantitative study done by Mulvaney et al. (2010) revealed that adolescent receiving internet-based self-management interventions for T1D improved their problem solving and self-management skills after receiving the internet based intervention. Self-management was found to offset the increase in A1C (glycemic control) in adolescent. Mulvaney et al. (2010) mentioned that it was small randomized trial which took place with 55 research participants. However, the authors did not mentioned anything about the process used to estimated sample size and reduce biases in research findings. Noble and Smith (2015) explains that a research article without justification about research methods and research design is vague and they limit the transparency of the research process. Hence, as the intervention was implemented for a very brief period and with very small sample size, there is a need to conduct larger randomized trials to validate problem-solving techniques and confirm the sustainability of the steps in self-management of T1D.
In response to the medication adherence barriers experience by adolescents in T1D self-management, the study by Vaala et al. (2015) investigated about the contribution of commonly available technologies like diabetes websites and apps on diabetes self-management in adolescents. The findings of research revealed that difference in utilization of technologies for diabetes. Among the five commonly available technologies (text messaging, glucometer software, diabetes websites, mobile apps for diabetes and social networking sites), adolescents were most commonly found to use text messaging for diabetes. In terms of frequency of use, adolescents who used diabetes app, text message and glucometer software were found to use the technology twice a week compared to social networking site and website. Another significant outcome was that adolescents using glucometer, social networking sites and glucometer soft-ware had better self-management behaviour. Self-management behaviour was assessed by the Self-Care Inventory Revised (SCI-R) scale and Vaala et al. (2015) also discussed about the internal consistency and predictive validity for A1C. Such discussions in a research literature increase the reliability and credibility of research findings. These types of considerations in research also increase the rigor in research design (Claydon 2015). The outcome obtained by Vaala et al. (2015) gives the implication that use of several technologies by adolescents can improve self-management skills of adolescents than single technology as different technology serves to meet different T1D related care needs. However, monitoring the content of such technology is essential to promote use of specific technology in adolescents. Izahar et al. (2017) support this by stating that content analysis can help to improve design of future diabetes app and effectively integrate patient’s need and usability of the device for disease management and lifestyle modifications.
The above mentioned research articles gave an overview about different online technologies to provide self-management support to adolescents. Another novel intervention that has been used to improve glycemic control and self-management skills in adolescents includes behavioural intervention. Maranda et al. (2015) use a behavioural intervention related to the structured care of a pet to improve gylcemic control in research participants. The findings from the randomized controlled trial revealed that significant decrease in A1C level in the intervention group compared to those in the control group. Another statistically significant outcome was that younger adolescents (10-13 years) were found to better respond to the treatment compared to older adolescent between 10-17 years. Maranda et al. (2015) was successful in depicting the feasibility of innovative behavioural intervention on improving glycemic control in patient. Self-care behaviour and efficacy of students in self-management increased. However, Maranda et al. (2015) could not take a large sample for analysis and another drawback of the research is that fish caring behaviour of adolescents were not formally documented. To promote transparency in research, accurate judgment for each intervention is necessary (Miguel et al. 2014). Irrespective of this, the simplicity and low cost of the intervention is an attraction for health promotion staffs. Validating the intervention in a larger cohort would facilitate wider utilization of the intervention in the community.
The main aim of the literature review was to critically analyse research papers related to barriers to self-management of T1D in adolescents. As per the objectives of the review, the thematic analysis of research papers gave comprehensive insight into the different categories of barriers faced by adolescents in the management of T1D. In the area of barriers to the self-management of T1D, the results of the literature review revealed the following barriers to optimal self-management process among adolescents: social barriers, treatment or regimen specific barriers, psychosocial barriers and people or family focused barriers to management of T1D. The main purpose of this section is to refine the issues raised in themes and engage in in-depth analysis to identify possible future steps that can help to maximize health of the adolescent group affected by T1D.
In the theme related to social barrier to self-management of T1D, several factors like peer influence, parental monitoring, difficult social situations and cultural diversities influence outcome of the adolescent group. The range of barriers suggests that the above mentioned factors are important elements that are involved in daily life pattern of adolescents and interpretation of contribution of different social forces on adolescent’s motivation towards diabetes control is am important contribution of the literature review. Two studies gave an overview about the barrier to T1D self-management because of peer influences. The limitation of the literature review done by Palladino and Helgeson (2012) was mixed results regarding peer influence and gyclemic control patterns in adolescents. To confirm role of peer influence on T1D adolescent outcomes, the qualitative study answered many answered questions that was left unaddressed in the review. The analysis of transcribed verbatim interview data revealed indicated about issues likes bullying, curiosity, information seeking and fearfulness. This evidence suggests that identifying the type of peer that adolescents are exposed to can significantly influence their self-care behaviours. As both negative and positive outcomes related to peer influences has been found, guiding the adolescent to engage in positive social networking is important. This can address negative experiences due to peer influence and promote well-being of adolescents too. Ho, O’Connor and Mulvaney (2014) suggest that adolescents with T1D can be encouraged to interact with online health communities so that they get the right mentors and moderators to shift negative peer influence into a positive influence promoting skill building in adolescents.
Fear of being discriminated in many social situations has also been identified as a barrier to treatment adherence in adolescents. This concept was given by Berlin et al. (2015) extensive evaluation peer influence through Friend and Peers Attribution Questionnaire. The finding is consistent with many other research evidence has indicated an association between interpersonal conflict and poor self- care behaviour (Borus and Laffel 2010). The extent of the problem is understood from the fact that unless these interpersonal conflicts are resolved, adolescents are vulnerable to risk of psychosocial disorders too. Kakleas et al. 2009 reported about the increased risk of psychiatric disorder, eating disorders and substance abuse in adolescents with T1D. These issues further increase their capability to comply with treatment regimen and achieve diabetic control. Hence, social influences and experience of discrimination cannot be controlled in every social situation. However, one aspect that can enhance self-esteem and instil the confidence to control health in adolescents includes providing them the right intervention to help them overcome their interpersonal conflict. In future, behaviour management interventions services can play a crucial role in addressing psychosocial barrier to T1D self management in teenagers (Pillay et al. 2015).
Another important results obtained from the literature review was the identification of cultural barriers to self-care behaviour and the impact of socioeconomic context on treatment adherence and treatment control. Inclusive of racially diverse cohort promoted collection of wide range of data and detecting wide disparities in treatment adherence and glycemic control. The research literature by Willi et al. (2015) explained that socio-economic status is an important factor that contribute to racial disparities in glycemic control. However, no cost analysis was found in the research study to confirm this. Comparison with income of different racial group and the cost of T1D treatment would have enhanced the quality of research evidence. Many cost related studies have been done, however they have mostly combined cost of both T1D and T2D (Tao et al. 2010). There is also lack of studies on socioeconomic status and gylcemic control in adolescents with T1D.
Datye et al. (2015) explains that lack of knowledge or social barriers contribute to many complications for T1D patients. However, even after addressing social barriers, treatment adherence issues can remain if the treatment regimen are two complex for patients. Daily insulin shots and constant monitoring is regarded as burdensome task for parents and adolescents with T1D. The literature review also suggested that adolescents perceived using devices as a challenging task because of poor perception about the device and barriers to its use in various social situations such as in schools and other setting. Gender difference was also presented (Wisting et al. 2016). However, gender difference is not a critical issues compared to the challenges with the use of insulin pumps. Contrary to many adolescents’ beliefs about insulin pumps, the reality is that use of insulin pumps provide greater flexibility to parents and children in terms of improve insulin delivery and lifestyle flexibility. Insulin pump has been introduced to optimize the flexibility of the therapy (Abdullah et al. 2014). However, as the literature review revealed that adolescents with T1D and their families have different perceptions about the utility of insulin pump, there is a need to negate these types of perceptions to optimize use of the insulin pumps. Therefore, diabetes care provider and pediatric nurses need to perform additional duty so that patients and caregivers are motivated to use the insulin pump without any worry. Before starting insulin therapy, nurse need to provide on-going support and education tailored to the needs and preference of the family so that treatment regimens empower adolescents to improve their quality of life instead of providing additional burden to them (Woerner 2014).
Psychological barriers to T1D self-management is also found as a critical issue from the literature review as it increases the risk of psychological disorders and poor gylcemic control in adolescents. The theme related to psychological barriers to self-management describes various components that increase challenges for patients. Some of the important element contributing to psychosocial barrier to self-management identified from the literature review included stress, impulsivity, forgetfulness, worry about future, feeling of exclusion, poor coping style and poor personal resilience. The advantage of research by Mulvaney et al. (2011) was that along with details regarding psychological reasons for not using self-management techniques, the study also indicated the potential of multi-media technology on improving adolescent’s motivation to engage in self-management. The study was limited by small sample size and lack of credibility of the media story source. However, this evidence gives direction to uncover new and innovative interventions that catch the attention of people at risk of poor adherence. Ritzert (2015) gave the idea that multi-media education about medications is more effective than usual care in improving knowledge and skill acquisition in patients. As many multi-media educational programs are coming up, having an effective framework to evaluate these programs is also necessary.
The literature review uncovered several causes behind presence of psychological symptom of stress and perceived burden of the disorder. Coping style and negative perceptions related to different from peers were some of the highlights of the findings presented by Castensøe?Seidenfaden et al. (2017) and Jaser et al. (2013). The uniqueness of Castensøe?Seidenfaden et al. (2017) work was the use of visual storytelling process to interpret perceptions of adolescents and parents. Stress and depression was common among adolescents with T1D as they expressed worries about the future. They had uncertainties related to future relationship, education, establishing a family and regularly visiting adult diabetes clinic. Another negative findings was that adolescents felt alone with their worries as they discussed their concerns with their parents. Parents also had similar concerns and they also avoided talking. Communication gap can further increase risk for adolescents with T1D. In such situation, the role of health care professionals is considered most important when a young child is diagnosed with T1D. Along with treatment regimen, clinicians should also focus on addressing fear of newly diagnosed patients so that they strive for safety and good quality living with T1D instead of developing other mental problems too. On-going support from multi-professional team can reduce psychological barriers to T1D self-management in adolescents (Kurtz, Draper and Silverman 2016). Building positive coping skills and providing training to overcome self-care related stressors can change perceptions of teenagers with T1D diagnosis. High level of resilience and coping skills corresponds to high level of self-esteem and positive among children with chronic illness and it increases social competence in youth too (Joachim and Acorn 2016).
Another contribution of the literature review result is that it highlights some important individual factors too which when corrected in adolescents can lead to positive outcome. For example, Yi-Frazier et al. (2015) gave insight into the impact of personal resilience on T1D outcome in adolescents and Miller et al. (2012) summarized the effect of developmental process on outcome. In addition, the research work of Hilliard et al. (2013) indicated that individual patient’s ability to effectively manage T1D and maintain glycemic control is also affected by their individual family factors and family dynamics. Miller et al. (2012) and Yi-Frazier et al. (2015) had a credible study design which ensured transferability of the research findings for service improvement and increasing opportunities for effective self-management. The literature review revealed self-management as a burdensome task for majority of adolescents with T1D. Findings related to association between personal resilience and self-management skills is consistent with the study by Yi-Frazier et al. (2015) as it used person-focused methodologies to reveal the link between low resilience and distress, poor quality of life and inadequate gylcemic control. Resilience can reduce stress. However, there is lack of resilience-specific intervention implemented for pediatric diabetes and these types of intervention has been implemented for other population group such as those with coronary heart disease and for adults with T2D. Therefore, the target for the future should be to identify promising interventions that can address maladaptive coping and promote personal resilience in adolescents with T1D.
The overview and critical review of research literature gives the insight that majority of adolescents patients with T1D fail to adhere to treatment regimen and meet important treatment goals. This is proved by a recently published research paper too. Apart from social barriers and poor perceptions, adherence to complex treatment regimen has been found as a major burden for adolescent’s overtime. Patel, Datye and Jaser (2018) explains that although continuous monitoring and management of intensive treatment plans (like daily glucose monitoring, insulin administration and carbohydrate counting) becomes challenging for all ages, however it is a greater issue for adolescents because of the interaction of various physiological as well as psychosocial changes on self-care behaviour. The literature review signifies that patient-provider communication has received little attention in T1D management and it is the major factor for high incidence of non-adherence to treatment among adolescents. Communication is vital component in any filed. Its advantage in the field of health care is that when it has direct or indirect impact on health outcomes (Datye et al. 2015). This is understood from an example related to communication process between patients and health care providers. If a clinicians develops good rapport with patients and verbally discusses concerns and sympathizes with patient, it creates a direct pathway for improve health and emotional well-being of patients. The indirect link is that patients have trust and faith in such care provider. Hence, focusing on patient-provider communication can improve adherence to treatment too (Patel, Datye and Jaser 2018). Therefore, one of the vital actions for the future is to identify strategies that promote successful communication between providers and caregivers. There is also a need to adapt innovative strategies to promote social competence, personal resilience and increased knowledge related to T1D and self-management process for optimal health outcomes.
For the theme related to outcome of many self-management interventions for adolescents with T1D, it was found that technology has been widely used in providing education related to self-management skills and problem solving. For example Mulvaney et al. (2010) used internet based self-management intervention and Vaala et al. (2015) explored the utility of many diabetes related technologies on self-management outcome of adolescents. The main lesson obtained from these research articles is that single technology is not sufficient to promote behavioural change in adolescents and combination of technologies are essential to ensure that adolescent group can address all health care related needs due to diabetes. Apart from technology, the effectiveness of behavioural interventions on self-management was also explored (Maranda et al. 2015). It used a novel concept of promoting behavioural change through engaging in activity of caring for dogs. Although lot more studies is needed to practically apply these interventions, however correct use of validated diabetes technology is found as a solution to address negative perceptions related to T1D and promote self-management skills.
Conclusion:
To conclude, the critical review of research literature summarized wide range of factors contributing to barriers in self-management of T1D among adolescents. In accordance with the objective of the literature review, adolescent’s experience with T1D was analysed to identify different types of barrier, evaluate self-management interventions implemented so far, evaluate credibility of research methodologies and identify possible solutions to address the issues. The literature review has been approached by first providing a short introduction on the role of self-management on people with chronic disease. The main rational for this is to help readers understand the need for research in the area of self-management. The literature review then starts with narrow focus on self-management related to adolescents with T1D. After review of all types of barriers, research literature related barriers in using certain self-management intervention has also been explored so as to identify gaps in those intervention and understand new possibilities to explore the results. The literature review provides the insight to change process factors related to diabetes management and actively involve patients in the management and control of T1D.
The literature review introduced wide categories of challenges witnessed by adolescents during T1D self-management. These included several types of social barriers (peer influence, negative evaluation in the society and cultural barriers), treatment specific barrier (negative or false perception about treatment regimen, utility of insulin therapy, lack of knowledge related to effective use of the insulin pumps and impact of eating disorders), psychosocial barriers (like depression, stress, isolation, negative coping style and poor personal resilience). Although transferability of many studies were limited by selection bias and lack of rigour in research design, however some credible research work were also found which used evidence based research tools to measure certain research outcomes. The critical analysis of the theme of social barrier indicates the need to implement interventions in school and health care setting so that issues related to discrimination and negative evaluation are addressed by diabetes experts. Apart from adolescents, people surrounding patients with T1D should also have right knowledge related to the disorder so that incidence such as bullying and discrimination can be controlled in various social situation. This will also increase adolescent’s level of social competence. The barriers related to psychosocial, treatment regimen and individual barriers also gives direction to promote skill development in diabetes care providers so that they can address negative perceptions related to the disease and provide effective knowledge to improve coping skills of adolescents newly diagnosed with T1D. Datye et al. (2015) suggest that there are many untapped potentials of diabetes care providers and this should be developed to improve treatment adherence and health outcome in adolescents with T1D. Provider communication, provider motivational interviewing and effective use of technology can be explored to improve adherence to therapy.
The literature review pointed out to several barriers in adolescent’s capability to manage T1D symptoms and achieve effective diabetic control. Inefficiency in several self-management support services were also found. After summing up all the interventions and identification of future actions needed to enhance the quality of life of adolescent with T1D, the following actions has been recommended:
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