Protocol for an umbrella review of the state-of-science on public and patient involvement in health and social care research with children, young people and families.

Background: Public and Patient Involvement (PPI) refers to the active collaboration of patients and the public in health and social care research decision-making, enhancing research success, cost-effectiveness, and impact. Children, young people, and their families bring unique lived experiences to PPI in research, relating to others with similar experiences, while factors like age, cognitive maturation, and developmental stage create differences between researchers and patients or the public. Collaboration with children, young people, and their families should be guided by specific project context and a strong evidence base.

DigiBete, a Novel Chatbot to Support Transition to Adult Care of Young People/Young Adults With Type 1 Diabetes Mellitus: Outcomes From a Prospective, Multimethod, Nonrandomized Feasibility and Acceptability Study.

Background: Transition to adult health care for young people and young adults (YP/YA) with type 1 diabetes mellitus (T1DM) starts around 11 years of age, but transition services may not meet their needs. A combination of self-management support digital health technologies exists, but no supportive chatbots with components to help YP/YA with T1DM were identified.

Objective: The aims of this study were to (1) evaluate the novel DigiBete Chatbot, the first user-led, developmentally appropriate, clinically approved transition chatbot for YP/YA with T1DM from four English diabetes services and (2) assess the feasibility of a future trial of the chatbot.

A pragmatic guide to data integration for pediatric researchers: the nuts and bolts of mixed methods analysis.

Objective: To provide pragmatic guidance on data analysis, integration, and reporting guidance for investigators new to mixed methods research.

Methods: Three core mixed methods designs (convergent, explanatory sequential, and exploratory sequential) are described. Key decision points related to data integration-specifying intent, data selection, data preparation, integration strategies, use of analysis software, reporting-are explained, including comparison of decision points across the different mixed methods designs.

Parent-Adolescent Communication, Self-Efficacy, and Self-Management of Type 1 Diabetes in Adolescents.

Purpose: The purpose of this study was to investigate adolescent perspectives of parent-adolescent communication, type 1 diabetes mellitus (T1DM)-specific family conflict, self-efficacy, and their relationship to adolescent self-management of T1DM.

Methods: A cross-sectional survey design was employed. Adolescents completed measures of parent-adolescent communication, T1DM-specific family conflict, self-efficacy, and self-management, which included activation and division of responsibility for management tasks.

Children and young people's preferences and needs when using health technology to self-manage a long-term condition: a scoping review.

Background: The use of patient-facing health technologies to manage long-term conditions (LTCs) is increasing; however, children and young people (CYP) may have preferences about health technologies which they interact or engage with, that influence their decision to use these technologies.

Aims: To identify CYP's reported preferences about health technologies to self-manage LTCs.

Methods: We undertook a scoping review, searching MEDLINE, PsycINFO and CINAHL in July 2021.

Building Family Interventions for Scalability and Impact.

Family nursing researchers are charged with addressing the conceptual and methodological underpinnings of family research when developing family-focused interventions. Step-by-step guidance is needed that integrates current science of intervention development with family science and helps researchers progress from foundational work to experimental work with policy integration. The purpose of this manuscript is to provide pragmatic, evidence-based guidance for advancing family intervention research from foundational work through efficacy testing.

Children's behavioural and emotional reactions towards living with congenital heart disease in Saudi Arabia: A grounded theory study.

Background: A high incidence of children with congenital heart disease (CHD) was found in Saudi Arabia (SA). International literature reports that children with CHD exhibit behavioural and emotional issues due to experiencing hospitalisation and clinical treatments combined with a dearth of qualitative understanding of the experiences of younger children with CHD. Therefore, the aim was to explore the behaviour and emotions of 4-10-year-olds with CHD in SA through children's accounts of their own experiences and parental proxy reports of children's behaviour and emotions.

Supportive use of digital technologies during transition to adult healthcare for young people with long-term conditions, focusing on Type 1 diabetes mellitus: A scoping review.

Type 1 diabetes mellitus (T1DM) is the second most common chronic or long-term condition (LTC) affecting young people (YP); when transitioning from paediatric to adult healthcare, young people with LTCs such as T1DM are expected to self-manage medication, diet and clinical appointments. This scoping review aimed to analyse research examining ways digital health technologies were used to support YP with LTCs during transition from paediatric to adult healthcare and to establish YP's needs, experiences and challenges when transitioning. We aimed to identify knowledge gaps and inform development of a novel chatbot with components such as avatars and linked videos to help YP with T1DM gain self-management confidence and competence during transition.

Relationship between parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent/family wellbeing and glycaemic control.

Objectives: This study investigated the relationship between parent-reported degree of openness and extent of problems in parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent and family wellbeing and adolescent glycaemic control.

Methods: A cross-sectional quantitative survey was conducted. Parents completed measures of parent-adolescent communication, parent monitoring of diabetes care, diabetes family responsibility, parent knowledge of diabetes care, parent activation, parent diabetes distress, and diabetes family conflict.

Multi-centre, randomised, open-label, blinded endpoint assessed, trial of corticosteroids plus intravenous immunoglobulin (IVIG) and aspirin, versus IVIG and aspirin for prevention of coronary artery aneurysms (CAA) in Kawasaki disease (KD): the KD CAA prevention (KD-CAAP) trial protocol.

Background: Kawasaki disease (KD) is an acute self-limiting inflammatory vasculitis affecting predominantly medium-sized arteries, particularly the coronary arteries. A number of recent studies conducted in different European countries have demonstrated alarmingly high coronary complications despite treatment with intravenous immunoglobulin (IVIG). These high complication rates now emphasize the need for an urgent reappraisal of IVIG as the sole primary therapeutic agent for KD.

Adolescent perspectives on negotiating self-management responsibilities for type 1 diabetes with their parents.

Objective: The overall purpose of this study was to explore adolescent perspectives on communicating about self-management of type 1 diabetes (T1D) and negotiating responsibilities for self-management with parents.

Methods: Semi-structured interviews were conducted with 28 adolescents aged 11-17 years living with T1D. Interviews were audio-recorded, transcribed verbatim and thematically analysed.

Supporting the parent-to-child transfer of self-management responsibility for chronic kidney disease: A qualitative study.

Introduction: As children with long-term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self-management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self-management responsibility and parents to relinquish control.

Parents' perspectives of factors affecting parent-adolescent communication about type 1 diabetes and negotiation of self-management responsibilities.

Adolescence is an important time in which young people take on type 1 diabetes (T1D) self-management responsibility. Parents are key facilitators of this process. Little is known about parents' experiences of communicating with their children about T1D during adolescence.

Nurses' attitudes towards family importance in nursing care across Europe.

Aims And Objective: To explore differences in nurses' attitudes regarding the importance of family in nursing care and factors associated with nurses' attitudes across 11 European countries.

Background: Family involvement in healthcare has received attention in many European healthcare systems. Nurses have a unique opportunity to promote family involvement in healthcare; however, their attitudes and beliefs may facilitate or impede this practice.

Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease.

Introduction: The responsibility for managing a long-term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP's role during this process.

A Pragmatic Guide to Qualitative Analysis for Pediatric Researchers.

Objective: To describe four approaches to qualitative analysis in order to provide a pragmatic, application-oriented guide to their use in research focused on children and their families.

Methods: Four commonly used approaches to qualitative analysis-framework analysis, rapid qualitative analysis, content analysis, and reflexive thematic analysis-are described and compared, including their analytic strategies, tips for use, terminology, and application to a hypothetical example.

Results: A pragmatic guide to each method is provided as well as examples of how each analytic approach could be utilized to analyze the same dataset.

Digital Technologies for Children and Parents Sharing Self-Management in Childhood Chronic or Long-Term Conditions: A Scoping Review.

Worldwide the prevalence of chronic (or long-term) conditions in children and young people from birth to 18 years (children) is increasing. Promoting competent and effective self-management skills early in the trajectory is important to improve adherence to treatment and optimise quality of life. Successful self-management, therefore, requires parents and children who are developmentally able to develop a range of complex skills, including the use of digital technologies.

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families.

Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles.

Children and young people's concerns and needs relating to their use of health technology to self-manage long-term conditions: a scoping review.

Background: The use of patient-facing health technologies to manage long-term conditions is increasing; however, children and young people may have particular concerns or needs before deciding to use different health technologies.

Aims: To identify children and young people's reported concerns or needs in relation to using health technologies to self-manage long-term conditions.

Methods: A scoping review was conducted.

Umbrella review of family-focused care interventions supporting families where a family member has a long-term condition.

Aim: The aim of this study was to summarize reviews of family-focused care interventions that support families with a family member with a long-term condition across the life course.

Design: Umbrella review.

Data Sources: Medline (1946-2019), Cochrane Database of Systematic Reviews (2019), Database of Abstracts of Reviews of Effect and EMBASE (1947-2019), CINAHL (1981-2019), Health Technology Assessment Database (2019) and PsycInfo (1806-2019).

From 'neurotic' to 'managing' mother: The 'medical career' experienced by mothers of a child diagnosed with Juvenile Idiopathic Arthritis.

Objective Despite increased research into how caring for a child diagnosed with juvenile idiopathic arthritis (JIA) affects mothers, more needs to be known about ways in which such experiences transform their lives. Insight into the experiences of such mothers was sought through analysis of interviews with eight mothers and one father caring for a child with JIA. Design The study is situated within a larger project involving families with a child with JIA.

A Feasibility Study Of Administering The Electronic Research And Development Culture Index To The Multidisciplinary Workforce In A UK Teaching Hospital.

Purpose: The study aims were: (i) to convert the Research and Development Culture Index (a validated rating instrument for assessing the strength of organizational Research and Development culture) into electronic format (eR&DCI), and (ii) to test the format and assess the feasibility of administering it to the multidisciplinary (allied health professionals, doctors and nurses) workforce in a National Health Service Hospital (NHS) in the United Kingdom (UK) by trialing it with the workforce of the tertiary Children's Hospital within the organization.

Population And Methods: The eR&DCI was emailed to all professional staff (n=907) in the Children's Hospital. Data were analyzed using IBM SPSS Statistics 22.

Behaviour and emotions of children and young people with congenital heart disease: A literature review.

Congenital heart disease (CHD) is one of the common types of birth defects. Children and young people (CYP) with CHD might exhibit behavioural and emotional changes related to undergoing different medical treatments and hospitalization. Therefore, a literature review was conducted from January 2000 to June 2017 that aimed to understand and evaluate current international literature focusing on CYP's behavioural and emotional status as patients with CHD.

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.