The International Society for Pediatric and Adolescent Diabetes (ISPAD) guidelines represent a rich repository that serves as the only comprehensive set of clinical recommendations for children, adolescents, and young adults living with diabetes worldwide. This chapter builds on the 2022 ISPAD guidelines, and updates recommendations on the principles of intensive insulin regimens, including more intensive forms of multiple daily injections with new-generation faster-acting and ultra-long-acting insulins; a summary of adjunctive medications used alongside insulin treatment that includes details on pramlintide, metformin, glucagon-like peptide-1 (GLP-1) receptor agonists (GLP-1RA) and sodium-glucose cotransporter inhibitors; and key considerations with regard to access to insulin and affordability to ensure that all persons with diabetes who need insulin can obtain it without financial hardship.

The provision of continuous care to a dependent person can lead to a lack of self-care by the caregiver themselves with corresponding low levels of well-being. This well-being has been analysed mostly from within the perspective of the hedonic tradition, with the development of personal growth often being overlooked. This study aims to increase the understanding of the connection between this type of psychological well-being and involvement in self-care activities, and to be a starting point for the determination of categories that may serve in the screening of potential participants in social-health interventions where it is being promoted. Taking the hypothesis of a probable positive connection between psychological well-being and involvement in self-care, an observational study was carried out on 45 caregivers of relatives with dementia. In those caregivers showing greater dedication to self-care, a higher score was obtained on the well-being scales connected to personal significance and positive emotions and experiences. These findings were further reinforced by the identification of other positive connections, the involvement in self-care and the six dimensions of wellness contemplated by Ryff. It is possible to envisage the existence of a virtuous circle in respect of the caregiver, whereby a greater involvement in self-care is related to a higher psychological well-being, which in turn is related to greater self-care, and so on.

The aims of this study were to: (a) determine if self-efficacy mediates the relationship between perceived stress and diabetes self-management in adolescents with type 1 diabetes (T1D); and (b) explore whether perceived stress moderated the self-efficacy and diabetes self-management relationship.

Non-experimental, descriptive correlational design, conducted from January-December 2016.

Guided by the Adaptation to Diabetes framework, data on demographic and clinical characteristics, perceived stress, self-efficacy and diabetes self-management were collected. Descriptive analyses and regression analyses were generated by SPSS Version 22. Structural equation modelling was implemented with the MPlus program.

There was no direct effect of perceived stress on diabetes self-management; however, self-efficacy mediated the relationship between perceived stress and diabetes self-management. Adolescents who had high self-efficacy and low perceived stress demonstrated better diabetes care activities and diabetes communication than would be predicted from the main effects of self-efficacy and perceived stress alone.

Decreasing perceived stress and improving self-efficacy are important strategies to improve diabetes self-management in adolescents with T1D.

Adolescents with T1D experience considerable stress with daily self-management demands. This study highlights the mediating role of self-efficacy on perceived stress and diabetes self-management. Assessment of perceived stress and self-efficacy in self-management tasks in adolescents with T1D may help nurses individualize self-management education and support. Incorporating strategies to promote stress management and self-efficacy in diabetes education may also improve diabetes self-management.

The increasing incidence of type 1 diabetes (T1D) in youth aged less than 20 years in the USA is a mounting public health concern. Specific sociodemographic characteristics-racial/ethnic minority, low socioeconomic status (SES), single-parent home and underinsured-have been associated with increased risk for poor glycemic control and poor self-management in adolescents with T1D.

Sample demographic and cultural responsiveness methods in psychosocial and behavioral interventions focused on improving self-management and glycemic control in adolescents with T1D were systematically evaluated, to identify if studies were targeting these high-risk groups. Keyword searches of PsychInfo, PubMed and CINAHL identified 259 studies published between 2006 and 2016, of adolescents (13-18 years old) with T1D; 28 studies met inclusion criteria.

Samples focused predominantly on White adolescents with fair glycemic control, from middle-high income, two-parent households with private insurance. The majority of studies scored poorly in cultural responsiveness and moderately in culturally responsive reporting. Studies lacked descriptions of culturally inclusive recruitment and sampling methods, and use of culturally responsive assessments for diverse groups. The majority of studies recruited and enrolled homogeneous adolescent samples from the lowest risk groups.

T1D intervention researchers must increase targeted recruitment and sampling methods to include more high-risk pediatric T1D groups, expand sociodemographic reporting, and increase the use of culturally responsive recruitment and sampling methods, such as those used in community-based participatory research. Such efforts have the potential to reduce T1D disparities by making interventions more relevant to the unique needs, goals and priorities of highest risk groups.

Applying principles of user-centered design, we iteratively developed and tested the prototype of TPP, an mHealth application to promote medication adherence and enhance communication about medication management between adolescents and primary caregivers. A purposive sample of seven adolescent solid organ transplant recipients who were ≥ one yr post-transplant and their primary caregivers participated. Participants completed up to three face-to-face laboratory usability sessions, a 6-week field test, and a debriefing session. Primary caregivers participated in an additional usability telephone session. Participants completed usability and satisfaction measures. Sample included liver (n = 4), heart (n = 2), and lung (n = 1) recipients aged 11-18 yr (57% were female, 86% were Caucasian), and nine primary caregivers aged 42-61 yr (88.9% were parents, 88% were female, 88% were Caucasian). Ninety percent of the adolescents endorsed the graphs or logs of missed/late medication dosing as useful and 100% endorsed the remaining features (e.g., medication list, dose time reminders/warnings) as useful. All adolescents expressed interest in using TPP for monitoring medications and satisfaction with the automatic messaging between adolescent and caregiver versions of the application. Adolescents unanimously found TPP easy to use. TPP shows promise as an mHealth adherence tool.

This study examines how the term 'self-care' imported from health promotion has been used in the context of patient education interventions for paediatric patients with type 1 diabetes.

Thirty articles over the last decade were analysed, using a qualitative method of thematic coding and categorizing.

The term 'self-care' has been mainly used as a synonym for self-management of one's condition and treatment. Indeed, the activities performed by paediatric patients independently or with the help of their parents under the term 'self-care' fail to explicitly take into account the general health and life dimensions of self-care, as defined in health promotion. Although such dimensions are implicitly present when it comes to define the parents' and health-care providers' roles in supporting the children's emerging self-care capacity, their importance is acknowledged as a way of strengthening the children's and their families' capacity to respond to illness demands, rather than in relation to their general well-being.

The discourse on self-care in the field of paediatric diabetes therefore appears to be oriented more towards disease and prevention, rather than health promotion. The psychosocial dimension of self-care should be particularly investigated, as young patients need to be supported in their efforts to gain autonomy not only in relation to the management of their condition, but in their lives in general.

Diabetes control in children remains poor in spite of advances in treatment for last 10 years. The aim of this review was to look at various aspects of intensive therapy in the management of type 1 diabetes such as insulin regimes, role of target setting, psycho-educational approaches and self-management. To achieve good metabolic control, clear goal setting with adequate support for self-management are essential. Psycho-educational and behavioural interventions aimed at specific areas of management have shown significant improvement in quality of life and diabetes control.

To identify whether changes in pubertal status and self-efficacy for diabetes management are associated with longitudinal declines in parental responsibility for diabetes, and to determine whether these factors moderate associations between declining parental responsibility and deteriorating adherence across adolescence.

Adolescents (N = 252; 53.6% females) with type 1 diabetes, mothers, and 188 fathers participated in a 2.5-year longitudinal study. Self-reports of pubertal status, adolescent efficacy, parental responsibility, and adherence were completed every 6 months (6 time points).

Latent growth curve modeling revealed that longitudinal increases in efficacy and pubertal maturation were uniquely associated with longitudinal declines in parental responsibility. Declines in parental responsibility were related to deterioration in adherence especially when adolescents did not report concomitant growth in self-efficacy.

Transfer of responsibility for diabetes management across adolescence may be more optimal when adolescents' increased independence is titrated to their changing self-efficacy beliefs.

Clinical guidelines differ regarding their recommended blood glucose targets for patients with type 1 diabetes and recent studies on patients with type 2 diabetes suggest that aiming at very low targets can increase the risk of mortality.

To assess the effects of intensive versus conventional glycaemic targets in patients with type 1 diabetes in terms of long-term complications and determine whether very low, near normoglycaemic values are of additional benefit.

A systematic literature search was performed in the databases The Cochrane Library, MEDLINE and EMBASE. The date of the last search was December 2012 for all databases.

We included all randomised controlled trials (RCTs) that had defined different glycaemic targets in the treatment arms, studied patients with type 1 diabetes, and had a follow-up duration of at least one year.

Two review authors independently extracted data, assessed studies for risk of bias, with differences resolved by consensus. Overall study quality was evaluated by the 'Grading of Recommendations Assessment, Development, and Evaluation' (GRADE) system. Random-effects models were used for the main analyses and the results are presented as risk ratios (RR) with 95% confidence intervals (CI) for dichotomous outcomes.

We identified 12 trials that fulfilled the inclusion criteria, including a total of 2230 patients. The patient populations varied widely across studies with one study only including children, one study only including patients after a kidney transplant, one study with newly diagnosed adult patients, and several studies where patients had retinopathy or microalbuminuria at baseline. The mean follow-up duration across studies varied between one and 6.5 years. The majority of the studies were carried out in the 1980s and all trials took place in Europe or North America. Due to the nature of the intervention, none of the studies could be carried out in a blinded fashion so that the risk of performance bias, especially for subjective outcomes such as hypoglycaemia, was present in all of the studies. Fifty per cent of the studies were judged to have a high risk of bias in at least one other category.Under intensive glucose control, the risk of developing microvascular complications was reduced compared to conventional treatment for a) retinopathy: 23/371 (6.2%) versus 92/397 (23.2%); RR 0.27 (95% CI 0.18 to 0.42); P < 0.00001; 768 participants; 2 trials; high quality evidence; b) nephropathy: 119/732 (16.3%) versus 211/743 (28.4%); RR 0.56 (95% CI 0.46 to 0.68); P < 0.00001; 1475 participants; 3 trials; moderate quality evidence; c) neuropathy: 29/586 (4.9%) versus 86/617 (13.9%); RR 0.35 (95% CI 0.23 to 0.53); P < 0.00001; 1203 participants; 3 trials; high quality evidence. Regarding the progression of these complications after manifestation, the effect was weaker (retinopathy) or possibly not existent (nephropathy: RR 0.79 (95% CI 0.37 to 1.70); P = 0.55; 179 participants with microalbuminuria; 3 trials; very low quality evidence); no adequate data were available regarding the progression of neuropathy. For retinopathy, intensive glucose control reduced the risk of progression in studies with a follow-up duration of at least two years (85/366 (23.2%) versus 154/398 (38.7%); RR 0.61 (95% CI 0.49 to 0.76); P < 0.0001; 764 participants; 2 trials; moderate quality evidence), while we found evidence for an initial worsening of retinopathy after only one year of intensive glucose control (17/49 (34.7%) versus 7/47 (14.9%); RR 2.32 (95% CI 1.16 to 4.63); P = 0.02; 96 participants; 2 trials; low quality evidence).Major macrovascular outcomes (stroke and myocardial infarction) occurred very rarely, and no firm evidence could be established regarding these outcome measures (low quality evidence).We found that intensive glucose control increased the risk for severe hypoglycaemia, however the results were heterogeneous and only the 'Diabetes Complications Clinical Trial' (DCCT) showed a clear increase in severe hypoglycaemic episodes under intensive treatment. A subgroup analysis according to the baseline haemoglobin A1c (HbA1c) of participants in the trials (low quality evidence) suggests that the risk of hypoglycaemia is possibly only increased for patients who started with relatively low HbA1c values (< 9.0%). Several of the included studies also showed a greater weight gain under intensive glucose control, and the risk of ketoacidosis was only increased in studies using insulin pumps in the intensive treatment group (very low quality evidence).Overall, all-cause mortality was very low in all studies (moderate quality evidence) except in one study investigating renal allograft as treatment for end-stage diabetic nephropathy. Health-related quality of life was only reported in the DCCT trial, showing no statistically significant differences between the intervention and comparator groups (moderate quality evidence). In addition, only the DCCT published data on costs, indicating that intensive glucose therapy control was highly cost-effective considering the reduction of potential diabetes complications (moderate quality evidence).

Tight blood sugar control reduces the risk of developing microvascular diabetes complications. The evidence of benefit is mainly from studies in younger patients at early stages of the disease. Benefits need to be weighed against risks including severe hypoglycaemia, and patient training is an important aspect in practice. The effects of tight blood sugar control seem to become weaker once complications have been manifested. However, further research is needed on this issue. Furthermore, there is a lack of evidence from RCTs on the effects of tight blood sugar control in older patient populations or patients with macrovascular disease. There is no firm evidence for specific blood glucose targets and treatment goals need to be individualised taking into account age, disease progression, macrovascular risk, as well as the patient's lifestyle and disease management capabilities.

Adolescence poses a number of special challenges for youth and their families managing the Type 1 diabetes medical regimen. Little is known on how family and youth factors and management of the regimen change over the course of early adolescence and predict adherence to the regimen during this developmental period.

Youth with Type 1 diabetes (n = 239) and their maternal caregivers completed measures of diabetes-specific autonomy support, diabetes-related family conflict, regimen responsibility, and blood glucose monitoring frequency (BGMF) at 4 timepoints over a 3-year period.

Autonomy support and BGMF significantly decreased over time and responsibility for the diabetes regimen shifted from the caregiver toward youth over time. Significant changes in perceived family conflict over time differed depending on the reporter. Baseline BGMF, changes in caregiver autonomy support, and changes in responsibility for the regimen significantly predicted changes in BGMF over time.

This study documents changes in autonomy support, youth responsibility for the diabetes regimen, and BGMF during the transition into early adolescence. Higher levels of caregiver autonomy support preserve BGMF during a developmental period in which BGMF typically deteriorates.

The objective of this study was to test a comprehensive model of biologic (pubertal status), family (communication and conflict), and psychological influences (behavioral autonomy) on diabetes management and glycemic control in a sample of youth (N = 226) with type 1 diabetes recruited during late childhood/early adolescence (ages 9-11 years). The study design was a prospective, multisite, multi-method study involving prediction of diabetes management and glycemic control 1 year post-baseline. The primary outcome measures included diabetes management behaviors based on the Diabetes Self-Management Profile (DSMP) administered separately to mothers and youth and glycemic control measured by glycated hemoglobin (HbA1c) obtained by blood samples and analyzed by a central laboratory to ensure standardization. Our hypothesized predictive model received partial support based on structural equation modeling analyses. Family conflict predicted less adequate glycemic control 1 year later (p < 0.05). Higher conflict predicted less adequate diabetes management and less adequate glycemic control. More advanced pubertal status also predicted less adequate glycemic control, but behavioral autonomy did not. Family conflict is an important, potentially clinically significant influence on glycemic control that should be considered in primary and secondary prevention in the management of type 1 diabetes in youth.

Adherence within pediatric transplantation has gained importance as the complexities of long-term medical management of these patients are identified and knowledge regarding the negative consequences of nonadherence accumulates. We review recent findings to highlight gaps in the literature and make suggestions for future directions.

Most research has focused on medication nonadherence, and a recent meta-analysis indicates that nonadherence is more prevalent in adolescent transplant recipients than in younger children. Nonadherence to other areas of the regimen (e.g. clinic attendance) may be even more common than medication nonadherence. However, work to date is based primarily on kidney and liver pediatric transplant patients, with a paucity of research on heart, lung and intestinal recipients. Risk factors for nonadherence after pediatric transplantation include poor family and child functioning. Intervention research remains rare. Challenges include the need for clearer definitions of what constitutes clinically significant nonadherence, longitudinal and prospective assessment of a wider range of potential risk factors, and the development and evaluation of interventions to treat or prevent nonadherence.

Adherence research in pediatric transplantation is in its infancy. Significant opportunities exist to advance the field and create standards for effective identification, measurement, and treatment of nonadherence.

The purpose of this integrative review was to describe the relationship between diabetes self-management and metabolic control in youth with type 1 diabetes and to explore factors which affect this relationship.

In the past 15 years, research has indicated that youth with type 1 diabetes face considerable self-management challenges and are at increased risk for poor metabolic control. To enhance the development of behavioural interventions for youth with type 1 diabetes, the relationship between diabetes self-management and metabolic control needs to be more clearly elucidated.

Research studies that examined the relationship between diabetes self-management and metabolic control in youth with type 1 diabetes were included (n = 18). The electronic databases searched included OVID, MEDLINE (1996 to present), SCOPUS (1996 to January 2010) and PubMed (1996 to January 2010).

An integrative literature review was carried out using Whittemore's modified framework for data collection, analysis and synthesis.

A positive relationship between diabetes self-management and metabolic control in youth with type 1 diabetes was supported in longitudinal studies and in studies where the mean age was >13 years. Factors influencing this relationship are identified. Measurement of self-management was quite variable.

Interventions targeting self-management in youth with type 1 diabetes are indicated, particularly in families of diverse race and ethnicity globally. Further evaluation of the measures of self-management and more longitudinal research are also indicated.

Youth with type 1 diabetes are at high risk for psychosocial morbidities. These include depression, disturbed eating behavior, family conflict, poor health-related quality of life, low self-efficacy, and difficulty with medical adherence and metabolic control. A number of prevention interventions have been studied in this group, with the overall goal of improving adaptation and coping skills. This paper reviews the current research aimed at preventing poor outcomes in youth with type 1 diabetes and recommends simple interventions that can be added to clinical encounters. Recommendations for future psychosocial prevention studies are also discussed.

During adolescence diabetes creates a juncture of very complex disease management demands with developmental needs, including the striving of adolescents for greater autonomy. Parents' concerns and fears about the teen's diabetes self-management abilities during this time can heighten parental attachment behaviour and affect the parents' ability to support autonomy development necessary for effective self-care. Maternal parenting processes may be especially important for those adolescents who have Type 1 diabetes because mothers are the primary caregivers.

Based on attachment theory, the aim was to test a model of the influence of mother-adolescent developmental conflict, maternal separation anxiety and maternal inhibition of autonomy and relatedness on cognitive autonomy and self-care of adolescents with Type 1 diabetes.

A total of 131 families with an adolescent, aged 11-15 years, contributed data annually across three waves. Mothers and adolescents completed paper-and-pencil measures and two interaction scenarios that were coded by trained staff from audio-tapes. The adolescent also completed a structured interview and questionnaire to assess self-care.

Maternal separation anxiety when adolescents were 11-15 years of age directly predicted cognitive autonomy at 1-year follow-up, and that cognitive autonomy was directly related to self-care 1 year later, but did not mediate between separation anxiety and self-care.

Future investigation of the influence of separation anxiety of parents on adolescent autonomy development is warranted, as well as the contribution of autonomy development to diabetes self-management behaviours of adolescents.

Collaboration between youths with type 1 diabetes (T1D) and their adult caregivers may be central to effective management of T1D. This article includes analysis of cross-sectional associations between T1D outcomes (adherence, glycemic control, quality of life, family conflict, depression, and self-efficacy) and scores on the Collaborative Parent Involvement (CPI) Scale obtained from 309 youths with T1D about their primary and secondary caregivers.

MANCOVA, controlling for age, evaluated associations of diabetes outcomes with youths' CPI scores for each caregiver.

Diabetes outcomes were poor when both caregivers obtained CPI scores below the median. Diabetes outcomes were more strongly associated with CPI scores of primary, rather than secondary, caregivers. CPI scores at or above the median among primary caregivers were associated with more favorable status on multiple youth outcomes. When both caregivers obtained CPI scores at or above the median, children had significantly lower HbA1C and parents retained more responsibility for diabetes care.

Higher collaborative involvement, particularly among primary caregivers, was associated with favorable status along a variety of diabetes outcomes. Longitudinal studies could confirm if youth-parent collaboration is a justifiable intervention target.

The purpose of the study is to describe allocation of responsibility for illness management in families of children and adolescents perinatally infected with HIV.

A total of 123 youth (ages 8-18) and caregivers completed family responsibility and medication adherence questionnaires as part of a substudy of Pediatric AIDS Clinical Trials Group protocol 219c.

Approximately one-fourth of the youth reported being fully responsible for taking medications. A smaller percentage of caregivers reported full youth responsibility. Older youth and caregivers of older youth reported higher degree of youth responsibility for medication-related tasks, though age was unrelated to adherence. Caregiver report of greater responsibility for medications was associated with better adherence.

Caregivers are likely to transition responsibility for HIV care to older youth but this transition was not always successful as evidenced by poor medication adherence. Interventions supporting successful transition may improve adherence and subsequently health outcomes in pediatric HIV.

Studies showing that family communication and conflict resolution are critical to effective management of type 1 diabetes in adolescents have stimulated interest in evaluating psychological treatments targeting these processes. Previous trials have shown that Behavioral Family Systems Therapy (BFST) improved parent-adolescent relationships but not treatment adherence or glycemic control. This study evaluates a revised intervention, BFST for Diabetes (BFST-D), modified to achieve greater impact on diabetes-related family conflict, treatment adherence, and metabolic control.

A sample of 104 families of adolescents with inadequate control of type 1 diabetes was randomized to either remain in standard care (SC) or to augmentation of that regimen by 12 sessions of either a multifamily educational support (ES) group or 12 sessions of BFST-D over 6 months. Pertinent measures were collected at baseline and at follow-up evaluations at 6, 12, and 18 months.

BFST-D was significantly superior to both SC and ES in effects on A1C, while effects on treatment adherence and family conflict were equivocal. Improvement in A1C appeared to be mediated by improvement in treatment adherence. A significantly higher percentage of BFST-D youth achieved moderate or greater improvement (>0.5 SD) in treatment adherence compared with the SC group at each follow-up and the ES group at 6 and 18 months. Change in treatment adherence correlated significantly with change in A1C at each follow-up.

These results support the efficacy of BFST-D in improving A1C, but further research is needed to identify the mechanisms of this effect and to achieve cost-effective dissemination of the intervention.