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. Guidance regarding the development of family interventions is presented using the first three of Sidani's five-stage method: (a) foundational work to understand the problem targeted for change; (b) intervention development and assessment of acceptability and feasibility; and (c) efficacy testing. Each stage of family intervention development is described in terms of process, design considerations, and policy and practice implications. Examples are included to emphasize the family lens. This manuscript provides guidance to family scientists for intervention development and implementation to advance family nursing science and inform policy.

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. METHODS: Charmaz's constructivist grounded theory (GT) approach was used. Twenty single semi-structured interviews of 10 child/parent dyads were undertaken at a hospital clinic in SA. Children's interviews were combined with an arts-based approach using drawings, pictures and faces of emotions (emojis). Constant comparison analysis was undertaken. Consolidated Criteria for Reporting Qualitative Research guidelines was followed in reporting this study. FINDINGS: A substantive GT: children's behavioural and emotional reactions towards stressors related to living with CHD was developed and provides new insights into children's and parents' perceptions of the children's behavioural and emotional reactions to living with CHD in SA. The theory proposes that children's reactions to living with CHD relate to medical treatment stressors, sociocultural stressors and physical change stressors. Several further factors influenced children's responses to these stressors. CONCLUSION: Children and parents in SA contributed to a new understanding of the relationship between CHD and children's behavioural and emotional reactions. In addition, findings support the need for early assessment of behaviour and emotions among children with CHD and the application of preventative and supportive measures for the children and their families in SA. PATIENT OR PUBLIC CONTRIBUTION: Before the research commenced, the developmental appropriateness of the proposed arts-based data collection tools was tested with three healthy children aged 6-9 years old; the tools were then revised accordingly before the interviews were undertaken.

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. RESULTS: In total, 146 parents/guardians (121 mothers, mean age 46.56 years, SD 5.18) of adolescents aged 11-17 years (mean age 13.9 years, SD 1.81) with Type 1 diabetes completed the survey. Open parent-adolescent communication was significantly correlated to adolescents' voluntarily disclosing diabetes-specific information to their parents more frequently, increased parental knowledge of their adolescent's diabetes care completion, parents feeling more capable and willing to take action in relation to their adolescent's diabetes health, lower levels of diabetes-related parental distress, less diabetes-specific family conflict, and optimal glycaemic control. DISCUSSION: Parent-adolescent communication has an important role to play in Type 1 diabetes healthcare management and psychosocial wellbeing during adolescence. Optimising open parent-adolescent communication represents a potentially useful target for interventional research and should be considered by healthcare professionals during healthcare encounters.

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. Nineteen studies identified through searching five electronic databases were included in this review. A combination of digital health technologies was used to support transition of YP with LTCs to adult healthcare. Barriers to successful transition were reported and YP described the importance of social relationships and transition readiness and expressed the need for individualised interventions that acknowledge social factors such as work and college. No supportive chatbots with components to help YP with T1DM were identified. This contribution will inform future development and evaluation of such a chatbot.

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. RESULTS: Two themes and five subthemes were identified. The first theme, 'changing levels of involvement in self-management' describes the division of responsibility for self-management within the family and adolescents collaborating and sharing responsibilities with parents for self-management. The second theme, 'talking about self-management with parents' describes changes in patterns of parent-adolescent communication about T1D over time, adolescents' seeking parental feedback and advice and the factors that contribute to the promotion of self-management communication between adolescents and parents. CONCLUSION: This study identified that how adolescents perceive communication with their parents contributes to negotiation of responsibilities for self-management during adolescence. The findings provide a nuanced understanding of adolescent perspectives on communication with parents about T1D self-management and how parent-adolescent communication can be framed in ways that promote positive adolescent engagement with T1D self-management. PRACTICE IMPLICATIONS: Targeting parent-adolescent communication strategies may result in more optimal sharing of responsibilities and improved self-management.

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. The Kawasaki disease CAA prevention (KD-CAAP) trial will test the hypothesis that immediate adjunctive corticosteroid treatment to standard of care IVIG and aspirin will reduce coronary artery aneurysm (CAA) rates in unselected KD patients across Europe. METHODS: KD-CAAP is a multicentre, randomised, controlled, open-label, blinded endpoint assessed trial that will be conducted across Europe supported by the conect4children pan-European clinical trials network. Patients with KD who satisfy the eligibility criteria will be randomised (1:1) to receive either oral prednisolone 2 mg/kg/day plus standard of care therapy IVIG (2 g/kg) and aspirin (40 mg/kg/day); or IVIG and aspirin alone. Further management is dictated by temperature and C-reactive protein (CRP) responses. Co-primary outcomes are as follows: (i) any CAA within the 3 months of trial follow-up; (ii) average estimate of maximum coronary Z-score at weeks 1, 2 and 6 adjusting for rescue treatment. Additional outcomes will be assessed including cost effectiveness, quality of life, corticosteroid toxicity and other safety outcomes. DISCUSSION: Several recent studies have indicated that coronary complications associated with KD across Europe are much higher than early trials of IVIG had initially suggested. KD-CAAP directly addresses this issue by exploring the therapeutic benefit of adjunctive corticosteroids in unselected KD cases. If we find that corticosteroids prevent CAA and are safe, this is a cheap and widely available intervention that could be implemented immediately for the benefit of children. TRIAL REGISTRATION: ISRCTN71987471- March 31, 2020; Eudract 2019-004433-17.

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. DESIGN: A cross-sectional survey across European countries. METHOD: A broad convenience sample of 8112 nurses across 11 European countries was recruited from October 2017 to December 2019. Data were collected using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire. We used the STROBE checklist to report the results. RESULTS: There were significant differences in nurses' attitudes about families' importance in nursing care across Europe. Country was the factor with the strongest association with the total scores of the FINC-NA. Older age, higher level of education, increased years since graduation, having a strategy for the care of families in the workplace, and having experience of illness within one's own family were associated with a higher total FINC-NA score. Being male and working in a hospital or other clinical settings were associated with a lower total FINC-NA score. CONCLUSION: Nurses' attitudes regarding the importance of family in nursing care vary across 11 European countries. This study highlights multiple factors associated with nurses' attitudes. Further research is necessary to gain a deeper understanding of the reasons for nurses' different attitudes and to develop a strong theoretical framework across Europe to support family involvement in patient care. The inclusion of family healthcare programs in the baccalaureate curriculum may improve nurses' attitudes. RELEVANCE FOR CLINICAL PRACTICE: In clinical practice, the focus should be on identifying influencing factors on nurses' attitudes to enhance families' importance in nursing care across Europe.

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. METHODS: A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13-17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. FINDINGS: Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self-management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child- or family-centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. CONCLUSION: This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child- and family-centred care, and how HCPs can adopt personalized, strengths-based approaches to help ensure the support that families receive is tailored to their individual needs. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.

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. Semi-structured interviews were conducted with 32 parents (24 mothers and 8 fathers) of adolescents (11-17 years) living with T1D to explore how parents communicate about T1D and self-management with their adolescent children. Parents were recruited through two national child and adolescent diabetes and endocrine clinics and online advertisement through a national diabetes advocacy organisation. Interviews were transcribed verbatim and thematically analysed. Six themes were identified: parent factors, quality of the parent-adolescent relationship, communication strategies, adolescent factors, communication triggers and family/system factors. Understanding factors that impact communication about self-management between parents and adolescents will enable healthcare professionals to provide support and targeted interventions as parent and adolescent roles change over time.

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. METHODS: Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13-17 years with CKD, 13 parents and 20 HCPs. FINDINGS: A grounded theory, shifting responsibilities, was developed that provides new insights into how young people's, parents' and HCPs' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people's self-management or young person-parent shared management. CONCLUSION: Families would benefit from HCP support over a longer timeframe that integrates assuming self-management responsibility with gaining independence in other areas of their lives and focuses on young people 'doing' self-management. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.

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. CONCLUSIONS: A variety of approaches to qualitative analysis are available to both novice and experienced qualitative researchers. The approach selected from the options presented in this article will depend on numerous factors, such as the clinical problem being explored, research context, aims, objectives, research questions, and resources available such as time and funds, and the qualitative expertise of the team.

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. This scoping review aimed to identify primary research investigating digital technologies for children and parents sharing self-management in childhood chronic illnesses. A comprehensive search of electronic databases was conducted. Nineteen papers were included, assessed for quality and methodological rigour using the Hawker tool and thematically analysed. Three themes were identified: (i) the feasibility and acceptability of using technology, (ii) the usability of technologies and (iii) the effect of technologies on adherence and self-management skills. The results indicate that technologies such as mobile apps and websites can assist the management of long-term conditions, are an acceptable method of delivering information and can promote the development of effective self-management skills by parents and children. However, future technology design must include children and parents in all stages of development.

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. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families' care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families' recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

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. We searched MEDLINE, PsycINFO and CINAHL in February 2019. Searches were limited to papers published between January 2008 and February 2019. We included any health technology used to manage long-term conditions. A thematic synthesis of the data from the included studies was undertaken. We engaged children with long-term conditions (and parents) to support review design, interpretation of findings and development of recommendations. RESULTS: Thirty-eight journal articles were included, describing concerns or needs expressed by n=970 children and/or young people aged 5-18 years. Most included studies were undertaken in high-income countries with children aged 11 years and older. Studies examined concerns with mobile applications (n=14), internet (n=9), social media (n=3), interactive online treatment programmes (n=3), telehealth (n=1), devices (n=3) or a combination (n=5). Children and young people's main concerns were labelling and identity; accessibility; privacy and reliability; and trustworthiness of information. DISCUSSION: This review highlights important concerns that children and young people may have before using technology to self-manage their long-term condition. In future, research should involve children and young people throughout the development of technology, from identifying their unmet needs through to design and evaluation of interventions.

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). REVIEW METHODS: All authors independently undertook title/abstract screening, data extraction and quality appraisal on a cluster of papers, working in groups of two or three to reach a consensus. The AMSTAR tool was used to appraise the quality of the studies and descriptive syntheses were undertaken. RESULTS: Fifteen reviews met the selection criteria. Overall family-focussed care and associated terms were poorly defined. Typically interventions were educational or psychological therapy/counselling with the goal of empowering individuals to manage their condition. There is some evidence that family-focused care interventions can improve clinical/biological health measures and self-care outcomes such as treatment adherence. Multicomponent psychosocial interventions that include cognitive-behavioural therapy, skills training, education and support and are focused on wider family members appear to improve family relationships and martial functioning. CONCLUSION: Long-term conditions have an impact on individual and family health and well-being, yet the impact of family-focused care interventions on family outcomes was overall inconclusive. A better understanding of how family-focused care interventions improve the health and well-being of individuals and their families is needed to promote the inclusion of family-focused care into practice. IMPACT: Supporting people with a long-term condition is a key health and social care priority. Family-focused care interventions have potential to improve the health and well-being of individuals and families, but there is a need to evaluate their clinical and cost-effectiveness. The findings from this review could be used by funding bodies when commissioning research for long-term conditions.

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 social constructionist approach was adopted and grounded theory including a 'negative case,' guided gathering and analysing data. Individual, semi-structured interviews were conducted based on the research question: 'What is it like to be the mother of a child with juvenile idiopathic arthritis?' Results Findings suggest that mothers find difficulty living up to the 'ideal mother' expected within Western society when forced to provide competing demands of age-related, yet illness-relevant care. The unpredictable nature of JIA means mothers face a lack of understanding from professionals so become hyper-vigilant, 'battling' on behalf of their ill child. A self-perpetuating loop develops if this is misperceived as being overprotective, leaving mothers vulnerable to being judged 'neurotic'. However, with experience, often at an emotional cost, such mothers' confidence in managing the competing demands of caring for their ill child increases such they can navigate a positive journey from 'neurotic' to 'managing' mother. Conclusions Understanding this process could help health care professionals reduce stressful experiences faced by mothers when caring for a chronically ill child. Statement of contribution What is already known on this subject? Mothers of chronically ill children are often diagnosed with anxiety and depression. Such mothers will have taken over managing their child's condition, and this can include negative experiences within the health care system. Qualitative methods enable deeper understanding of the experiences of mothers of chronically ill children. What does the study add? Potentially gendered position of mothers of children with chronic conditions. Taken for granted assumptions implicitly underpin interactions between mothers and some professionals. Greater partnership between mothers and professionals ultimately improves the care of the ill child.

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. A comprehensive search of Medline, PsycINFO and CINAHL databases was undertaken. Eight quantitative studies were reviewed following strict eligibility criteria. The Mixed Methods Appraisal Tool (MMAT) was used to assess the quality of the reviewed studies. Parents provided proxy reports on their children's behaviour and emotions in all studies. Half of the reviewed studies presented the self-perceptions of children who were over seven years old. CYP with CHD exhibited internalizing and externalizing behavioural problems, withdrawal, depression, social, and attention problems. CYP with more severe CHD reported greater behavioural and emotional problems than CYP with less severe CHD. Moreover, younger children developed more problems than older children. Future more depth research using qualitative designs is required to explore the personal views of children younger than seven years old on the impact of CHD on their behaviour and emotions.

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. RESULTS: The eR&DCI was completed by 155 respondents (doctors n=38 (24.52%), nurses n=79 (50.96%) and allied health professionals (AHPs) n=38 (24.52%)). The response rate varied by professional group: responses were received from 79 out of 700 nurses (11%); 38 out of 132 doctors (29%) and 38 out of 76 AHPs (50%). Index scores demonstrated a positive research culture within the multidisciplinary workforce. Survey responses demonstrated differences between the professions related to research training and engagement in formal research activities. CONCLUSION: This is the first study to assess the feasibility of assessing the strength of an organization's multidisciplinary workforce research and development (R&D) culture by surveying that workforce using the eR&DCI. We converted the index to "Online Surveys" and successfully administered it to the entire multidisciplinary workforce in the Children's Hospital. We met our criteria for feasibility: ability to administer the survey and a response rate comparable with similar studies. Uptake could have been increased by also offering the option of the paper-based index for self-administration. Results of the survey are informing delivery of the research strategy in the Children's Hospital. This methodology has potential application in other healthcare contexts.

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.