Barrier to Type 1 diabetes self-management in adolescents

This literature review critically evaluates research literature to gain an understanding about the barriers to Type 1 diabetes self-management for adolescents. The review identifies social, treatment regimen related, psychological and person-centred barriers to self-management of T1D in adolescents.

Running head: BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR
ADOLESCENTS
Barrier to Type 1 diabetes self-management in adolescents
Name of the student:
Name of the University:
Author’s note

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
Abstract:
The main purpose of the literature review is to critically evaluate research literature to
gain an understanding about the barriers to Type 1 diabetes self management for adolescents.
Type 1 diabetes has become a highly prevalent condition in children and adolescents and
diagnosis of the disease presents many unique challenges for the adolescent group. As various
complex factors interact to influence treatment adherence in adolescents, conducting research to
identify barriers to self-management was important. The objectives of literature review was to
evaluate perspective of teenagers with T1D regarding self-management and identify challenges
or issues for them related to self-management. By conducting search for research articles in
various databases like CINAHL, PubMed and Medline and critical analysis of research
literatures, the results of the review were presented in the form of themes and sub-themes. The
five important themes related to barriers to self-management of T1D in adolescents included
social barriers, treatment regimen related barriers, psychological barriers and person-centred
barriers. The themes indicate that environmental, social, psychological and personal coping
abilities create diverse range of experience in self-management. Social themes indicate the
impact of peer influence and bullying experience on self-esteem and self-management capability
of adolescents. These challenges directs the need to implement school based interventions so that
young adolescents develop the right skills to overcome such challenges and people in the
community act as empowerment for affected individuals instead of a source of conflict. Role of
patient-provider communication has been also identified to address poor perceptions related to
treatment regimen and poor knowledge about self-management process.

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
Table of Contents
Introduction:....................................................................................................................................3
Aim and objectives:.........................................................................................................................5
Search strategy:................................................................................................................................6
2. Literature review:.........................................................................................................................8
2.1 Importance of self-management in the management of diseases..........................................8
2.2 Barriers to self-management of type 1 diabetes in adolescents:............................................8
2.3 Outcome of self-management interventions on adolescents with T1D:..............................18
Discussion:.....................................................................................................................................21
Conclusion:....................................................................................................................................28
Recommendation:..........................................................................................................................30

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
Research topic: Literature review on barrier to Type 1 Diabetes self-management for
adolescents
Introduction:
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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

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self-management and development appropriate self-management support strategies to improve
quality of life of adolescents affected by T1D (Morse 2015).
Aim and objectives:
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:
 To evaluate experience of adolescents in T1D self-management
 To identify barriers to the self-management of T1D
 To evaluate role of different interventions on managing T1D
 To identify strengths and gaps in research findings
 To suggest solutions to address the challenges faced by teenagers in T1D self-
management
Search strategy:
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?’.

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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:
 All research articles must have adolescents or teenagers as the main population of interest
 The research articles must be reporting about self-management in relation to T1D
 The research articles must be published within 2008 to 2018
 Research articles reporting about T1D in adults or older patients were excluded
 All types of research articles such as primary or secondary research literature can be
taken for analysis
 The research articles must be published in no other language than English.
Data analysis:

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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.
2. Literature review:
2.1 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

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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.
2.2 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.

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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

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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

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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

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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

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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

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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.

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(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

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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

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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

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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).
2.3 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

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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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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.

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
Discussion:
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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).

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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.

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
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.
Recommendation:
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

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
future actions needed to enhance the quality of life of adolescent with T1D, the following actions
has been recommended:
 It is recommended that T1D care providers pay attention to identifying psychosocial
disorders in adolescents diagnosed with T1D and they should be encouraged to actively
refer high-risk adolescents to behavioural management services. This form of behavioural
contracts can provide positive reinforcement to adolescents regarding treatment goals and
achieve agreement with parents and teenagers regarding achieving T1D treatment goals
(Pillay et al. 2015).
 The literature review revealed use of insulin pumps as one of greatest burden in treatment
for adolescents. Poor use of device was seen in adolescents because of poor perceptions
of the device. It is recommended to address false perceptions related to the use of insulin
pumps by providing tailored education session to parents and adolescents before
initiating the therapy. This can promote flexibility in insulin administration and
management of complications in adolescents (Woerner 2014).
 As gap in patient-provider communication regarding self-management has been found, it
is recommended that clinicians should engage in open communication with adolescents
with T1D and their parents. This may help to clarify many doubts and poor perceptions
that young adults have about T1D and its treatment regimen.
 To improve patient-provider communication, it is recommended to effectively address
time, technology, healthy numeracy and provider burnout factors. To ensure that
clinicians have adequate time to engage in patient provider communication, effective use
of electronic medical record and group appointment is essential. Integration of
technology with interpersonal communication skills can address barriers to

BARRIER TO TYPE 1 DIABETES SELF-MANAGEMENT FOR ADOLESCENTS
communication process. In addition, stress reduction strategies can promote effective
interaction between provider and patients (Patel, Datye and Jaser 2018).
 It is recommended to engage in content analysis of diabetes technology to determine the
list of technologies that can be used to educated adolescents and improve their knowledge
in the area of T1D self-management (Izahar et al. 2017).

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