Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: An integrative review

© 2019 John Wiley & Sons Ltd Background: Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self-management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility. Methods: An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self-management of their LTC? (b) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes. Results: Twenty-nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility. Conclusions: Evidence suggests that the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change

Switching patients from other inhaled corticosteroid devices to the Easyhaler(®) : historical, matched-cohort study of real-life asthma patients

Peer reviewedPublisher PD

Children and young people’s experiences and perceptions of self-management of type 1 diabetes: A qualitative meta-synthesis

The aim of this review was to conduct a meta-synthesis of the experiences and perceptions of self-management of type 1 diabetes of children and young people living with type 1 diabetes (CYPDs). Six databases were systematically searched for studies with qualitative findings relevant to CYPDs’ (aged 8–18 years) experiences of self-management. A thematic synthesis approach was used to combine articles and identify analytical themes. Forty articles met the inclusion criteria. Two analytical themes important to CYPDs’ experiences and perceptions of self-management were identified: (1) negotiating independence and (2) feeling in control. The synthesis contributes to knowledge on contextual factors underpinning self-management and what facilitates or impedes transition towards autonomous self-management for CYPDs

The role of self-management practices as mechanisms for re-establishing normality in cancer survivors

This article explores the relationship between cancer survivors’ use of self-management practices and their search for normality. Using Frank’s illness narratives and other theoretical literature on normality in chronic illness, it draws on findings from a qualitative study to explore different ways cancer survivors use self-management practices to re-establish normality in their lives post-cancer. The findings suggest that “normality” represents different things to cancer survivors. We suggest that normality in survivorship is not a static concept but is fluid, and at certain times, cancer survivors may display some or all of these different versions of normality. The findings show that self-management practices can help cancer survivors experiment with different health and lifestyle processes to help support their “normal” daily lifestyle activities, quality of life, and well-being. </jats:p

Parent and adolescent communication with healthcare professionals about Type 1 diabetes management at adolescents’ outpatient clinic appointments

Aim: This study aimed to identify the ways in which adolescents living with Type 1 diabetes and their parents communicate about Type 1 diabetes management with healthcare professionals in a clinical setting. Methods: Twenty‐nine adolescents (aged 11–17 years) and their parents were purposively recruited from two outpatient clinics for non‐participant observations. Outpatient clinic appointments, which consisted of multiple consultations with healthcare professionals, were observed and audio‐recorded. Outpatient clinic appointments were categorized based on the nature and extent of communication by the adolescent and their parent(s) in relation to Type 1 diabetes management activities. Results: Data from 29 outpatient clinic appointments, consisting of a total of 68 observed consultations, were analysed and a continuum consisting of three patterns of communication was identified (parent‐led, collaborative and adolescent‐led). Healthcare professionals should attend to the nature and extent of communication by adolescents and their parents in relation to Type 1 diabetes management activities because parent and adolescent engagement in communication during clinic appointments may also reflect their degree of involvement in daily Type 1 diabetes management. Conclusions: This continuum provides a framework for healthcare professionals to use to identify communication patterns in consultations which in turn may allow healthcare professionals to encourage more effective communication about Type 1 diabetes management from adolescents and their parents in clinic consultations. This may have a positive impact on the sharing of Type 1 diabetes management responsibilities and adolescents’ developing self‐management skills as roles change during this developmental period

Efficacy and safety of insulin pump treatment in adult T1DM patients : influence of age and social environment

Introduction and objective. Continuous subcutaneous insulin infusion (CSII) via personal insulin pump is a valuable therapeutic tool in T1DM patients. However, adherence to recommended CSII- related behaviours may be of concern to young adults with intensive, variable daily activities (students, young professionals). The aim of this observational study was to estimate treatment outcomes in young adult patients with T1DM, and compare them with older individuals. Materials and methods. Overall, 140 adults with T1DM on CSII were examined, divided into 2 subgroups: 77 patients younger than 26 years of age (mean 20.6 years) and 63 older subjects (mean 39.0). We compared the glycaemic control in both groups of T1DM subjects and analyzed treatment attitudes to identify potentially modifiable behaviours influencing the efficacy of the treatment. Results. The younger individuals were characterized by significantly worse treatment outcomes, compared to the older ones: the mean HbA1c levels were 7.6 ± 1.3% and 6.9±1.3% (p=0.00001), while the mean glucose levels based on glucometer downloads were 161±33.6 mg/dL and 136±21.8 mg/dL (p=0.00001), respectively. The frequency of self-monitoring of blood glucose (SMBG) was lower in younger individuals (5.3±2.1 vs. 7.0±2.8 daily, p=0.0005, respectively); they were also less frequently used advanced pump functions, e.g. the bolus calculator (48% vs. 67% users, p=0.0014, respectively). Conclusions. The efficacy of CSII treatment observed in young T1DM adults was worse than in older patients. The reason for this phenomenon remains unclear, it may be due simply to age-dependend behaviours, to social environment, or both

Self-Care among Adolescents with Type 1 Diabetes M ellitus and Nursing Care in Sri Lanka:Review of Literature

Type 1 Diabetes Mellitus (T1DM) is a chronic condition with long term psychological and behavioural implications. Self-care is the cornerstone to adapt into this condition. Sociocultural appropriate self-care practices are vital aspects in nursing care. The article reviews literature on self-care among adolescents with T1DM considering sociocultural context and to discuss existing nursing care and its current issues within the Sri Lankan context. A systematic literature survey was conducted to review empirical studies from 2000 to 2014. Electronic databases PubMed and CINAHL were utilized. Personal interviews and relevant websites were accessed to explore existing nursing care and its current issues in Sri Lanka. PubMed displayed 1,065 articles for the key words‘nursing’ and ‘Type 1 diabetes’while CINAHL displayed 31 articles for the same.‘Perceptions’,‘associated characteristics’, ‘school behaviour’and ‘family behaviour’were identified as main categories in the literature. The nursing oriented articles relevant to self-care’, ‘sociocultural’, ‘Sri Lanka’and ‘Type 1 diabetes’were insufficient in number. Scientific studies pertaining to the field need to optimized. The unavailability of specialized nurse educators for childhood diabetes is a noticeable issue. The implementation of effective nursing interventions considering Sri Lankan sociocultural context is recommended

The Relationship of Worry About Hypoglycemia With Diabetes-specific and Typical Youth Behavior Among Emerging Adults With Type 1 Diabetes

PURPOSE: Little is known about the relationship of worry about hypoglycemia with diabetes-specific and typical youth behaviors among emerging adults with type 1 diabetes. This study's purpose was to examine the relationship among worry about hypoglycemia, diabetes management, and glycemic control within the context of alcohol use, hypoglycemia-related weight control behaviors, depressive symptoms, and impulse control among emerging adults with type 1 diabetes. RESEARCH DESIGN AND METHODS: The sample was 181 emerging adults with type 1 diabetes who were part of a larger study. Path analysis was used to test associations among worry about hypoglycemia, diabetes management, hypoglycemia-related weight control behaviors (WCB), alcohol use, impulse control, depressive symptoms, and glycemic control. RESULTS: Path model fit and modification indices suggested that a feedback loop between worry about hypoglycemia and diabetes management should be incorporated into the original model. Youth with fewer depressive symptoms reported fewer hypoglycemia-related WCB and less worry about hypoglycemia; those with higher impulse control had less alcohol use and better diabetes management; those with lower alcohol use had more worry about hypoglycemia; and better glycemic control was associated with better diabetes management. CONCLUSIONS: Health care professionals need to understand how multiple factors related to worry about hypoglycemia and diabetes management interact in emerging adults. In the context of depressive symptoms, impulse control, alcohol use, and hypoglycemia-related WCB, the path model results suggest several potential avenues for intervening to improve glycemic control in emerging adults

Development of self-management in pediatric inflammatory bowel disease: a qualitative exploration

Background: Self-management programs in pediatric chronic conditions, such as asthma and diabetes were effective in improving health-related outcomes. Similarly, self-management in the context of adult in inflammatory bowel disease (IBD) safely reduced healthcare costs. Nevertheless, evidence on self-management in pediatric IBD is scant. This study aims to explore self-management in pediatric IBD by exploring the childhood experience of IBD and how it is understood by the participants. Methods: Using a constructivist grounded theory approach, seven participants aged 8-17 years old were recruited in a tertiary metropolitan pediatric IBD center. Semi-structured interviews using topic guides and optional draw-and-write methods were used for data collection. Multi-level coding and constant comparison methods were utilised during data analysis. Results: The pediatric IBD self-management theory described the phenomenon of self-management through the relationship of categories that emerged from the study. Self-management starts off as a parent-dominant process that progressed to a more autonomous form with increasing disease experience. The experience was described as filled with struggles and a developing sense of control in managing these struggles. Autonomous self-management developed from the interaction of information, insight and integration. Enablers and deterrents were the contextual factors that influenced the development of self-management. Conclusions: Establishing identity both as a psychosocial developmental task and a disease-specific task is the core of self-management in childhood IBD. Future self-management programs should explore the role of structures around the child (family, school and healthcare systems) and the implementation of a proactive philosophy of involving children in managing their condition