scholarly journals POS0057-PARE SUMMARY OF PATIENT/PARENT ORGANISATION SERVICES PROMOTING SELF- AND SHARED-MANAGEMENT OF JIA IN THE UK AND IRELAND

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 235.1-235
Author(s):  
S. Stones ◽  
V. Swallow ◽  
L. Milnes
Keyword(s):  
Young People ◽  
Visual Information ◽  
Mode Of Delivery ◽  
Skills Training ◽  
Self Report ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Shared Management ◽  
Management Interventions ◽  
The Uk

Background:Various patient/parent organisations provide information, education, and support services to children and young people with JIA and their families. Some organisations are JIA/uveitis focused, while others are umbrella rheumatic and musculoskeletal disease (RMD) organisations or have a broader remit to long-term conditions (LTCs). However, there are no summaries of such collective services offered in the UK and Ireland, which can add to confusion for children, young people, and families, while contributing to inconsistent signposting to services from healthcare professionals.Objectives:To summarise current and recent services promoting self- and shared-management of JIA by patient/parent organisations in the UK and Ireland.Methods:An electronic search of known patient/parent organisation platforms (website and/or social networking sites) was performed between August 2020 and January 2021. Materials provided at conference exhibitions since October 2016 were also reviewed. Services were identified, including their aims and further details, if available. These were then mapped by format (e.g., educational, telemedicine, art therapy) and element (e.g., informational videos, monitoring through self-report diaries, discussing art and related feelings), according to their mode of delivery (individual or group), adapted from Sattoe et al. (2015) [1].Results:Twelve patient/parent organisations in the UK and Ireland were identified (11 of which had some form of charity/company registration): seven were JIA-specific, one was uveitis-specific, two were RMD-focused, and two were LTC-focused. In total, 48 services were identified across the twelve organisations. Generally, group mode of delivery was more popular than individual mode of delivery. Of group-based services, educational and/or support sessions and residential/excursion programmes were the most frequently observed. Of individual-based services, educational sessions including written and visual information were predominant. No one organisation provided services across all formats and elements identified. There appeared to be a limited focus on goal setting, individual level skills training, and explicitly improving self-and/or shared-management capacity. Gamification techniques were notably absent, as was the use of psychotherapeutic approaches, such as cognitive behavioural therapy and motivational interviewing.Conclusion:Various services are offered by multiple patient/parent organisations with an interest in JIA across the UK and Ireland to promote self- and shared-management. However, no single organisation provides a comprehensive package of services to address the entire information, education, and support needs of children and young people with JIA, or their families. Furthermore, clarity of services offered across the sector is poor. Enhanced collaboration between organisations, together with a clearer focus on enhancing self- and shared-management of JIA across the lifecourse, may help to improve the offering to children, young people, and their families, so that they can more competently manage JIA.References:[1]Sattoe et al. Self-management interventions for young people with chronic conditions: A systematic overview. Patient Education and Counseling 2015; 98(6): 704-715.Acknowledgements:This work formed part of a PhD study funded by the University of Leeds.Disclosure of Interests:Simon Stones Speakers bureau: Janssen., Consultant of: Envision Pharma Group., Veronica Swallow: None declared, Linda Milnes: None declared.

scholarly journals POS1473-HPR SELF- AND SHARED-MANAGEMENT INTERVENTIONS FOR CHILDREN, YOUNG PEOPLE, AND FAMILIES LIVING WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES: AN INTEGRATIVE REVIEW

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1022.1-1022
Author(s):  
S. Stones
Keyword(s):  
Young People ◽  
Musculoskeletal Diseases ◽  
Integrative Review ◽  
Research Articles ◽  
Self Management ◽  
Children And Young People ◽  
Shared Management ◽  
Management Interventions ◽  
Family Nursing ◽  
Patient Reported

Background:Self-management refers to the manner in which individuals manage the symptoms, treatment, physical and psychosocial impact of long-term conditions (LTCs). The importance of equipping children and young people living with LTCs, like rheumatic and musculoskeletal diseases (RMDs) with the capacity to self-manage is increasingly recognised in the literature, and in conversation. In addition, there is a strong case to support families who assume a shared-management role for their child. However, there is a limited understanding of interventions designed to improve self- and shared-management capacity in this population, prompting for a review of the literature, across multiple study designs.Objectives:The aim of this integrative review was to identify and describe interventions promoting self-management of RMDs by children and young people, and shared-management of RMDs by families.Methods:The integrative review followed a six-stage process [1]. Studies published since 2010 were identified through a search of eight bibliographic databases. Studies reporting on any paediatric-onset RMD were included, as were those in multiple condition areas where RMDs were included in the analysis. Twenty-six articles met the inclusion criteria: 24 research articles reporting on 17 interventions, and two review articles containing a further four research articles. The methodological quality of included articles was assessed using the Mixed Methods Appraisal Tool, and a thematic synthesis was undertaken.Results:Most study participants were CYP and families living with JIA. A minority of studies included CYP and families living with other RMDs, as well as chronic pain, type 1 diabetes mellitus, epilepsy, sleeping disorder, and cancer. Around half of the articles reported a specific theory and/or model or framework guiding the intervention. Interventions tended to be focussed at either CYP or families, with few designed to span the lifecourse from birth to young adulthood, while supporting all members of the family unit. Intervention types included: decisional aids; comic educational book; family retreat weekend; internet- and group-based cognitive behavioural programme; internet-based peer mentoring intervention; internet-based self-guided self-management intervention with weekly social support; internet-based electronic patient-reported outcome platform; smartphone applications; telenursing intervention; therapeutic recreational camp; therapeutic family nursing conversations; transition programme/clinic; and video games-based task-orientated activity training.Conclusion:This integrative review identified a range of interventions that have been evaluated to promote self- and shared management of RMDs by CYP and their families. There is a noticeable lack of emphasis on targeting the whole lifecourse for CYP, as well as supporting both CYP and families as they manage their RMD. Further work is needed to explore the underlying mechanisms which dictate how self- and shared-management interventions influence outcomes for CYP and families, under differing contexts, since this was overlooked by the majority of included studies.References:[1]De Souza et al. Integrative review: What is it? How to do it? Einstein (São Paulo) 2010; 8(1): 102-106.Acknowledgements:This work formed part of a PhD study funded by the University of Leeds.Disclosure of Interests:Simon Stones Speakers bureau: Janssen, Consultant of: Envision Pharma Group

scholarly journals Integrated care for childhood epilepsy: ongoing challenges and lessons for other long-term conditions

2016 ◽  
Vol 101 (11) ◽  
pp. 1057-1062 ◽  
Author(s):  
Amit Bali ◽  
Dougal S Hargreaves ◽  
John Cowman ◽  
Monica Lakhanpaul ◽  
Colin Dunkley ◽  
...  
Keyword(s):  
Young People ◽  
Integrated Care ◽  
Childhood Epilepsy ◽  
Long Term Conditions ◽  
Children And Young People ◽  
New Model ◽  
Global Issue ◽  
The Uk

Epilepsy care has been identified as a major global issue—and there are many recognised concerns in the UK for children and young people with the condition. A proposed new model could help to increase multisector integration, facilitate better outcomes and offer lessons for improving care of other long-term conditions.

scholarly journals Collateral impact of COVID-19: why should children continue to suffer?

2021 ◽  
Author(s):  
Prasad Nagakumar ◽  
Ceri-Louise Chadwick ◽  
Andrew Bush ◽  
Atul Gupta
Keyword(s):  
Young People ◽  
Large Scale ◽  
Hospital Admissions ◽  
Severe Disease ◽  
Children And Young People ◽  
Collateral Effects ◽  
Rsv Infection ◽  
Syncytial Virus ◽  
Set Up ◽  
The Uk

AbstractThe COVID-19 pandemic caused by SARS-COV-2 virus fortunately resulted in few children suffering from severe disease. However, the collateral effects on the COVID-19 pandemic appear to have had significant detrimental effects on children affected and young people. There are also some positive impacts in the form of reduced prevalence of viral bronchiolitis. The new strain of SARS-COV-2 identified recently in the UK appears to have increased transmissibility to children. However, there are no large vaccine trials set up in children to evaluate safety and efficacy. In this short communication, we review the collateral effects of COVID-19 pandemic in children and young people. We highlight the need for urgent strategies to mitigate the risks to children due to the COVID-19 pandemic. What is Known:• Children and young people account for <2% of all COVID-19 hospital admissions• The collateral impact of COVID-19 pandemic on children and young people is devastating• Significant reduction in influenza and respiratory syncytial virus (RSV) infection in the southern hemisphere What is New:• The public health measures to reduce COVID-19 infection may have also resulted in near elimination of influenza and RSV infections across the globe• A COVID-19 vaccine has been licensed for adults. However, large scale vaccine studies are yet to be initiated although there is emerging evidence of the new SARS-COV-2 strain spreading more rapidly though young people.• Children and young people continue to bear the collateral effects of COVID-19 pandemic

scholarly journals M.I.C.E—Mental Health Intervention for Children with Epilepsy: a randomised controlled, multi-centre clinical trial evaluating the clinical and cost-effectiveness of MATCH-ADTC in addition to usual care compared to usual care alone for children and young people with common mental health disorders and epilepsy—study protocol

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Sophie D. Bennett ◽  
◽  
J. Helen Cross ◽  
Anna E. Coughtrey ◽  
Isobel Heyman ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Usual Care ◽  
Psychological Intervention ◽  
Mental Health Disorders ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Health Disorders ◽  
Randomised Controlled

Abstract Background Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. Methods In total, 334 participants aged 3–18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Children’s Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. Discussion This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. Trial registration ISRCTN ISRCTN57823197. Registered on 25 February 2019.

scholarly journals O31 Trajectories of anxiety in children young people and adults with rheumatic diseases in the wake of COVID-19: results from the COVID-19 European patient registry

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Stephanie J W Shoop-Worrall ◽  
Suzanne M M Verstappen ◽  
Wendy Costello ◽  
Saskya P Angevare ◽  
Yosef Uziel ◽  
...  
Keyword(s):  
Young People ◽  
Rheumatic Diseases ◽  
Model Fit ◽  
Patient Registry ◽  
Linear Quadratic ◽  
High Anxiety ◽  
Children And Young People ◽  
Chi Squared ◽  
The Uk ◽  
Cubic Polynomials

Abstract Background/Aims  Younger and older people with rheumatic diseases may experience increased anxiety during the COVID-19 pandemic, due to the uncertainty regarding their likelihood of contracting the virus, its complications alongside their existing condition and whether their immunosuppressive treatments pose additional risks. This study explored trajectories of anxiety in parents of children and young people (CYP) with rheumatic diseases and adults with rheumatic diseases in the six months following March 2020 during the COVID-19 pandemic. Methods  CYP and adults recruited to the international COVID-19 European Patient Registry, a parent-led, online, self-referred prospective cohort recruiting participants globally, were selected if enrolled within 20th March to 17th April 2020. Anxiety scores (0-10, 10=Highest anxiety) were collected weekly for up to 28 weeks and denoted parent anxiety in the CYP cohort and self-reported anxiety in the adult cohort. Group-based trajectory models explored anxiety clusters using censored-normal models in the CYP and adult populations, separately. Linear, quadratic and cubic polynomials were tested within 1 to 10 clusters and optimal models selected based on a combination of model fit (BIC), parsimony and clinical plausibility. Demographic (country, age, gender) and clinical (diagnosis, disease control, respiratory comorbidity, immunosuppressive therapy) information and COVID-19 mitigation behaviours (isolation, distancing, none) were collected at initial enrolment and compared between clusters using Chi-squared, Fisher’s exact and Kruskal-Wallis tests. Results  Among 498 CYP and 2640 adults, most were female (65%, 89%) and from the UK (50%, 84%), respectively. The most common diagnoses were polyarticular JIA (37%) and oligoarticular JIA (29%) among CYP and RA among the adults (63%). Respiratory comorbidities were uncommon in the CYP (10%) and adult (17%) cohorts, and most were taking any immunosuppressive therapies (85%, 87%), respectively. As of March 2020, 88% and 79% were self-isolating, respectively. In both the parents of CYP and adult cohorts, four trajectory clusters were identified with similar patterns: Persistent extremely high anxiety (32%, 17%), persistent high anxiety (43%, 41%), high anxiety that marginally improved (25%, 32%) and moderate anxiety that improved (11%, 10%). Among CYP, few characteristics distinguished the clusters. However, in the adult cohort, clusters with greater and more persistent anxiety were associated with higher levels of respiratory comorbidities, higher use of immunosuppressive therapies, higher initial levels of self-isolation and slightly older age than those with lower or improving anxiety over time. Conclusion  This study reports four trajectories of anxiety during the COVID-19 pandemic that are consistent across parents of CYP with rheumatic diseases and among adults with these conditions. Despite relatively lower risks for CYP, parental anxiety regarding COVID-19 was high and not associated with characteristics of their child or of their child's disease. Among adults with rheumatic diseases, greater anxiety was associated with risk factors potentially associated with COVID-19 morbidity and mortality. Disclosure  S.J.W. Shoop-Worrall: None. S.M.M. Verstappen: None. W. Costello: None. S.P. Angevare: None. Y. Uziel: None. C. Wouters: None. N. Wulffraat: Honoraria; Sobi. Grants/research support; Abbvie. R. Beesley: None.

scholarly journals Unexpected deaths of children and young people in the UK

2016 ◽  
Vol 40 (2) ◽  
pp. 68-71 ◽  
Author(s):  
Paul Stallard ◽  
Michelle Maguire ◽  
Justin Daddow ◽  
Rosie Shepperd ◽  
Mike Foster ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Services ◽  
Young People ◽  
Health Services ◽  
Child Death ◽  
National Data ◽  
Children And Young People ◽  
National Health Service Trust ◽  
Incident Reports ◽  
The Uk

Aims and methodTo review the deaths of children and young people who took their own life. We conducted a retrospective analysis of serious incident reports from a National Health Service trust and reviews by the child death overview panels of the local safeguarding children boards.ResultsWe identified 23 deaths, with annual rates varying considerably between local authorities and over time. Over half of the children (n = 13, 56%) were not known to specialist child and adolescent mental health services, with 11 having no contact with any agency at the time of their death. Hanging was the most common method (n = 20, 87%) and of these, half (n =11, 55%) were low-level hangings.Clinical implicationsTraining is required to improve awareness, recognition and the assessment of children at risk of taking their own life. Specialist child mental health services should directly assess plans or attempts at hanging and offer advice about the seriousness of attempting this. National data (by age) on children and young people who take their own life should be routinely published to inform clinical and preventive services.

Thinking about ethnicity and gender diversity in children and young people

2018 ◽  
Vol 24 (2) ◽  
pp. 291-303 ◽  
Author(s):  
Nastasja M de Graaf ◽  
Ilham I Manjra ◽  
Anna Hames ◽  
Claudia Zitz
Keyword(s):  
Young People ◽  
Identity Development ◽  
Gender Identity ◽  
Gender Diversity ◽  
Age Groups ◽  
Chi Square ◽  
Children And Young People ◽  
And Gender ◽  
The Uk ◽  
Ethnicity Data

Background: Little is known about how social and cultural variants interact with gender identity development. This article aims to identify the ethnicities of children and young people referred to the United Kingdom’s national Gender Identity Development Service (GIDS), and compare the ethnicity data with the UK child population and referrals to Child and Adolescent Mental Health Services (CAMHS). Methods: GIDS referrals made between April 2012 and April 2015 for children and young people were retrieved. Ethnicity data were obtained by the ‘16 + 1’ ethnicity list. Chi-square and t-tests were performed on the demographics. Results: Less than 10% of the 995 referrals at GIDS were from Black and minority ethnic (BME) groups – an underrepresentation as compared with both the national population and CAMHS figures. No significant differences in ethnic representation were found between the demographic birth-assigned sexes, across age groups, or year of referral. Conclusions: Hypotheses proposed for this underrepresentation take into account both the potential barriers to accessing services and the possibility of cross-cultural variations in the conceptualisations of gender, gender roles and gender diversity. Ethnicity, culture and religion, and their overlapping relationship with gender need further exploration.

scholarly journals The nature of music itself, and the knowledge versus skills debate in music education

2016 ◽  
Vol 33 (2) ◽  
pp. 129-132 ◽  
Author(s):  
MARTIN FAUTLEY ◽  
REGINA MURPHY
Keyword(s):  
Young People ◽  
Music Education ◽  
Children And Young People ◽  
The Arts ◽  
The World ◽  
The Uk ◽  
Music And The Arts

Back in 2013, in the BJME editorial for issue 30(2), we considered the place of knowledge in the curriculum (Fautley & Murphy, 2013). Things have not stood still since that date, certainly in England, and other parts of the world too. What we have now is a situation where the idea of knowledge as assuming supremacy over skills is on the increase. For those of us concerned with music education, many aspects of this increasingly fractious debate are to be viewed with concern. Allied to this, we have neoliberal-leaning governments in many parts of the world, Britain included, who seem to find it difficult to understand the important role that music education has – or should have – in the education of our children and young people. Indeed, in the UK, the education secretary is on record as making this observation: Education secretary Nicky Morgan has warned young people that choosing to study arts subjects at school could ‘hold them back for the rest of their lives’ (The Stage, 2014) This attitude, and Britain is certainly not alone in this, is clearly going to be problematic for those of us involved in music and the arts.

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.

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