scholarly journals Guideline Development for Technological Interventions for Children and Young People to Self-Manage Attention Deficit Hyperactivity Disorder: Realist Evaluation (Preprint)

2018 ◽  
Author(s):  
Lauren Powell ◽  
Jack Parker ◽  
Val Harpin ◽  
Susan Mawson
Keyword(s):  
Attention Deficit Hyperactivity Disorder ◽  
Phase 1 ◽  
Management Strategies ◽  
Realist Evaluation ◽  
The Self ◽  
Self Management ◽  
Children And Young People ◽  
Hyperactivity Disorder ◽  
Key Stakeholders ◽  
Technological Interventions

BACKGROUND Attention deficit hyperactivity disorder (ADHD) is a complex neurodevelopmental disorder characterized by inattention, hyperactivity, and impulsivity. ADHD can affect the individual, the individual’s family, and the community. ADHD is managed using pharmacological and nonpharmacological treatments, which principally involves others helping children and young people (CAYP) manage their ADHD rather than learning self-management strategies themselves. Over recent years, technological developments have meant that technology has been harnessed to create interventions to facilitate the self-management of ADHD in CAYP. Despite a clear potential to improve the effectiveness and personalization of interventions, there are currently no guidelines based on existing evidence or theories to underpin the development of technologies that aim to help CAYP self-manage their ADHD. OBJECTIVE The aim of this study was to create evidence-based guidelines with key stakeholders who will provide recommendations for the future development of technological interventions, which aim to specifically facilitate the self-management of ADHD. METHODS A realist evaluation (RE) approach was adopted over 5 phases. Phase 1 involved identifying propositions (or hypotheses) outlining what could work for such an intervention. Phase 2 involved the identification of existing middle-range theories of behavior change to underpin the propositions. Phase 3 involved the identification and development of context mechanism outcome configurations (CMOCs), which essentially state which elements of the intervention could be affected by which contexts and what the outcome of these could be. Phase 4 involved the validation and refinement of the propositions from phase 1 via interviews with key stakeholders (CAYP with ADHD, their parents and specialist clinicians). Phase 5 involved using information gathered during phases 1 to 4 to develop the guidelines. RESULTS A total of 6 specialist clinicians, 8 parents, and 7 CAYP were recruited to this study. Overall, 7 key themes were identified: (1) positive rewarding feedback, (2) downloadable gaming resources, (3) personalizable and adaptable components, (4) psychoeducation component, (5) integration of self-management strategies, (6) goal setting, and (7) context (environmental and personal). The identified mechanisms interacted with the variable contexts in which a complex technological intervention of this nature could be delivered. CONCLUSIONS Complex intervention development for complex populations such as CAYP with ADHD should adopt methods such as RE, to account for the context it is delivered in, and co-design, which involves developing the intervention in partnership with key stakeholders to increase the likelihood that the intervention will succeed. The development of the guidelines outlined in this paper could be used for the future development of technologies that aim to facilitate self-management in CAYP with ADHD.

Self-management in children and young people with epilepsy: A systematic review and qualitative meta-synthesis

2020 ◽  
pp. 135910532096353
Author(s):  
Orla Mooney ◽  
Aoife McNicholl ◽  
Veronica Lambert ◽  
Pamela Gallagher
Keyword(s):  
Social Support ◽  
Systematic Review ◽  
Young People ◽  
Management Strategies ◽  
The Self ◽  
Self Management ◽  
Future Research ◽  
Limited Evidence ◽  
Self Monitoring ◽  
Children And Young People

The aim of this review was to conduct a meta-synthesis of qualitative studies exploring the self-management experiences, attitudes and perspectives of children and young people (CYP) living with epilepsy. Five databases were systematically searched up to September 2019. Fourteen papers were included. One analytical theme: self-management strategies was generated informed by four descriptive themes; concealment; medicine adherence; self-monitoring of activities; and seeking social support. The synthesis identified that while CYP with epilepsy engage in specific self-management strategies, there is limited evidence in understanding self-management and the processes underlying the use of it. Future research examining self-management in childhood is required.

scholarly journals POS0154-HPR FACTORS FACILITATING THE SELF- AND SHARED-MANAGEMENT OF JIA BY CHILDREN, YOUNG PEOPLE, THEIR FAMILIES, AND PROFESSIONALS INVOLVED IN THEIR CARE: A REALIST EVALUATION

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 290.1-290
Author(s):  
S. Stones ◽  
V. Swallow ◽  
L. Milnes
Keyword(s):  
Young People ◽  
Healthcare Professionals ◽  
Third Sector ◽  
Realist Evaluation ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Education Professionals ◽  
Shared Management

Background:Juvenile idiopathic arthritis (JIA) is a long-term condition, often requiring some element of lifelong management. Therefore, it is logical that children and young people are empowered to become competent at self-managing their health and wellbeing, while families are supported in their shared-management role during childhood, relinquishing control at age- and developmentally appropriate periods in their child’s development. However, there are limited theoretical foundations underpinning optimal self- and shared-management support for children, young people and families living with JIA.Objectives:To explain the factors facilitating the self- and shared-management of JIA by children, young people, and their families, with professional support from healthcare professionals, third sector organisations, and education professionals.Methods:Guided by the Individual and Family Self-management Theory and the Shared Management Model, a three-stage realist evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from a document review, integrative review, and stakeholder insights [1]; 2) seven initial question theories were tested using qualitative research methods with 20 participants (young people, families, healthcare professionals, education professionals, and third sector representatives); 3) analysis of findings using a theory-driven approach to thematic analysis, in order to identify demi-regularities to extend or refute the initial question theories. The analysis drew on deductive, inductive, and retroductive reasoning.Results:There were six refined JIA self- and shared-management question theories: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential.Conclusion:There is an increasing recognition of the importance of self- and shared-management of JIA. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and the third sector. Findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels. Further work is required to empirically test these refined question theories with interventions designed to enhance JIA care, education, and support.References:[1]Stones et al. (2020). A realist approach to eliciting the initial programme theories for the self- and shared-management of juvenile idiopathic arthritis by children, young people, families and professionals involved in their care. Pediatric Rheumatology 18(Suppl 2): O062.Acknowledgements:The authors thank all of the participants who helped to shape the findings of this study. This work formed part of a PhD study funded by the University of Leeds.Disclosure of Interests:Simon Stones Speakers bureau: Janssen, Consultant of: Parexel, Envision Pharma Group, 67 Health, On The Pulse Consultancy, Veronica Swallow: None declared, Linda Milnes: None declared

scholarly journals Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis

2020 ◽  
Vol 11 (05) ◽  
pp. 769-784
Author(s):  
Ipek Ensari ◽  
Adrienne Pichon ◽  
Sharon Lipsky-Gorman ◽  
Suzanne Bakken ◽  
Noémie Elhadad
Keyword(s):  
Additional Data ◽  
Intraclass Correlation ◽  
Management Strategies ◽  
The Self ◽  
Self Management ◽  
Cross Sectional ◽  
Two Samples ◽  
Data Source ◽  
Daily Function ◽  
Over Time

Abstract Background Self-tracking through mobile health technology can augment the electronic health record (EHR) as an additional data source by providing direct patient input. This can be particularly useful in the context of enigmatic diseases and further promote patient engagement. Objectives This study aimed to investigate the additional information that can be gained through direct patient input on poorly understood diseases, beyond what is already documented in the EHR. Methods This was an observational study including two samples with a clinically confirmed endometriosis diagnosis. We analyzed data from 6,925 women with endometriosis using a research app for tracking endometriosis to assess prevalence of self-reported pain problems, between- and within-person variability in pain over time, endometriosis-affected tasks of daily function, and self-management strategies. We analyzed data from 4,389 patients identified through a large metropolitan hospital EHR to compare pain problems with the self-tracking app and to identify unique data elements that can be contributed via patient self-tracking. Results Pelvic pain was the most prevalent problem in the self-tracking sample (57.3%), followed by gastrointestinal-related (55.9%) and lower back (49.2%) pain. Unique problems that were captured by self-tracking included pain in ovaries (43.7%) and uterus (37.2%). Pain experience was highly variable both across and within participants over time. Within-person variation accounted for 58% of the total variance in pain scores, and was large in magnitude, based on the ratio of within- to between-person variability (0.92) and the intraclass correlation (0.42). Work was the most affected daily function task (49%), and there was significant within- and between-person variability in self-management effectiveness. Prevalence rates in the EHR were significantly lower, with abdominal pain being the most prevalent (36.5%). Conclusion For enigmatic diseases, patient self-tracking as an additional data source complementary to EHR can enable learning from the patient to more accurately and comprehensively evaluate patient health history and status.

O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

scholarly journals Chromosome 15 Duplication and Attention-Deficit Hyperactivity Disorder

2017 ◽  
Vol 08 (04) ◽  
pp. 660-661
Author(s):  
Sundar Gnanavel
Keyword(s):  
Attention Deficit Hyperactivity Disorder ◽  
Case Report ◽  
Attention Deficit ◽  
Management Strategies ◽  
Behavioral Phenotype ◽  
Chromosome 15 ◽  
Diagnosis And Management ◽  
Psychiatric Illnesses ◽  
Hyperactivity Disorder

ABSTRACTChromosome 15 duplication has been associated with a number of psychiatric illnesses including psychosis and autism. However, literature on association with attention-deficit hyperactivity disorder (ADHD) is scant. This case report describes a patient with chromosome 15 duplication diagnosed with ADHD in our neurodevelopmental clinic. The possible biological underpinnings are discussed along with possible challenges in diagnosis and management. The need for better understanding ADHD as a behavioral phenotype in such cases along with need for tailored management strategies is emphasized.

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