scholarly journals Mapping the current psychology provision for children and young people with juvenile dermatomyositis

2021 ◽  
Vol 5 (3) ◽  
Author(s):  
Polly Livermore ◽  
Faith Gibson ◽  
Kathleen Mulligan ◽  
Lucy R Wedderburn ◽  
Liza J McCann ◽  
...  
Keyword(s):  
Health Care ◽  
Young People ◽  
Health Care Professionals ◽  
Juvenile Dermatomyositis ◽  
Children And Young People ◽  
Autoimmune Condition ◽  
Rheumatic Conditions ◽  
Psychosocial Implications ◽  
Current Psychological ◽  
The Uk

Abstract Objectives Juvenile Dermatomyositis (JDM) is a rare, chronic autoimmune condition of childhood, with known psychosocial implications. In this study, we sought to establish current psychological support for children and young people across the UK with rheumatic conditions, with a specific focus on those with JDM. Methods Electronic surveys were distributed to the 15 centres that belong to the JDM Research Group in the UK, collecting responses from health-care professionals in the fields of medicine, nursing and psychology. Results One hundred per cent of professionals from medicine and nursing replied from all 15 centres. Of these, 7 (47%) did not have a named psychologist as part of their rheumatology team, despite the majority [13 (87%)] having >200 paediatric rheumatology patients. Of the remaining centres, hospital psychology provision varied considerably. When rating their service, only 3 (8%) of 40 professionals scored their service as five (where one is poor and five is excellent); there were wide discrepancies in these scores. Many challenges were discussed, including limited psychology provision, lack of time and difficulties in offering support across large geographical areas. Conclusion Many of the challenges discussed are applicable to other centres worldwide. Suggestions have been proposed that might help to improve the situation for children and young people with rheumatic conditions, including JDM. Based on these findings, we suggest that rheumatology teams maximize use of these data to advocate and work toward more comprehensive psychology provision and support in their individual centres.

scholarly journals Proactive responses to aggressive behaviours in out-of-home care

2010 ◽  
Vol 35 (1) ◽  
pp. 31-38
Author(s):  
Stephen Larmar ◽  
Julie Clark
Keyword(s):  
Health Care ◽  
Young People ◽  
Home Care ◽  
Health Care Professionals ◽  
Children And Young People ◽  
The Third ◽  
Out Of Home Care ◽  
Practical Support ◽  
Aggressive Behaviours ◽  
Challenging Behaviours

Children and young people placed in out-of-home care often present with a range of complex and challenging behaviours that place significant stress on carers and other individuals involved in the placement process. The need for practical support, including the facilitation of knowledge sharing opportunities to better support carers and other health care professionals in assisting children and young people in out-of-home care, is of particular importance within the Australian context. This paper is the third in a series of four papers exploring a range of challenging behaviours that may be evidenced in children and young people placed in out-of-home care. The paper focuses on aggressive behaviours in children and adolescents and outlines a working framework to assist carers in responding appropriately to aggressive responses within the out-of-home care context.

scholarly journals Different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis: the SIRJIA mixed-methods feasibility study

2020 ◽  
Vol 24 (36) ◽  
pp. 1-152
Author(s):  
Ashley P Jones ◽  
Dannii Clayton ◽  
Gloria Nkhoma ◽  
Frances C Sherratt ◽  
Matthew Peak ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Disease Activity ◽  
Health Care Professionals ◽  
Disease Activity Score ◽  
Controlled Trial ◽  
Juvenile Arthritis ◽  
Children And Young People ◽  
Randomised Controlled ◽  
The Uk

Background In the UK, juvenile idiopathic arthritis is the most common inflammatory disorder in childhood, affecting 10 : 100,000 children and young people aged < 16 years each year, with a population prevalence of around 1 : 1000. Corticosteroids are commonly used to treat juvenile idiopathic arthritis; however, there is currently a lack of consensus as to which corticosteroid induction regimen should be used with various disease subtypes and severities of juvenile idiopathic arthritis. Objective The main study objective was to determine the feasibility of conducting a randomised controlled trial to compare the different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis. Design This was a mixed-methods study. Work packages included a literature review; qualitative interviews with children and young people with juvenile idiopathic arthritis and their families; a questionnaire survey and screening log to establish current UK practice; a consensus meeting with health-care professionals, children and young people with juvenile idiopathic arthritis, and their families to establish the primary outcome; a feasibility study to pilot data capture and to collect data for future sample size calculations; and a final consensus meeting to establish the final protocol. Setting The setting was rheumatology clinics across the UK. Participants Children, young people and their families who attended clinics and health-care professionals took part in this mixed-methods study. Interventions This study observed methods of prescribing corticosteroids across the UK. Main outcome measures The main study outcomes were the acceptability of a future trial for children, young people, their families and health-care professionals, and the feasibility of delivering such a trial. Results Qualitative interviews identified differences in the views of children, young people and their families on a randomised controlled trial and potential barriers to recruitment. A total of 297 participants were screened from 13 centres in just less than 6 months. In practice, all routes of corticosteroid administration were used, and in all subtypes of juvenile idiopathic arthritis. Intra-articular corticosteroid injection was the most common treatment. The questionnaire surveys showed the varying clinical practice across the UK, but established intra-articular corticosteroids as the treatment control for a future trial. The primary outcome of choice for children, young people, their families and health-care professionals was the Juvenile Arthritis Disease Activity Score, 71-joint count. However, results from the feasibility study showed that, owing to missing blood test data, the clinical Juvenile Arthritis Disease Activity Score should be used. The Juvenile Arthritis Disease Activity Score, 71-joint count, and the clinical Juvenile Arthritis Disease Activity Score are composite disease activity scoring systems for juvenile arthritis. Two final trial protocols were established for a future randomised controlled trial. Limitations Fewer clinics were included in this feasibility study than originally planned, limiting the ability to draw strong conclusions about these units to take part in future research. Conclusions A definitive randomised controlled trial is likely to be feasible based on the findings from this study; however, important recommendations should be taken into account when planning such a trial. Future work This mixed-methods study has laid down the foundations to develop the evidence base in this area and conducting a randomised control trial to compare different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis is likely to be feasible. Study registration Current Controlled Trials ISRCTN16649996. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 36. See the NIHR Journals Library website for further project information.

scholarly journals ‘Snakes & Ladders’: factors influencing access to appropriate care for children and young people with suspected juvenile idiopathic arthritis – a qualitative study

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Tim Rapley ◽  
Carl May ◽  
Nicola Smith ◽  
Helen E. Foster
Keyword(s):  
Health Care ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Paediatric Rheumatology ◽  
Health Practitioner ◽  
Children And Young People ◽  
Appropriate Care ◽  
Initial Symptoms

Abstract Background Many children and young people with juvenile idiopathic arthritis (JIA) experience delay in diagnosis and access to right care. The reasons for delay are multi-factorial and influenced by patient and family, clinician and organisational factors. Our aim was to explore the experiences of care, from initial symptoms to initial referral to paediatric rheumatology. Methods We analysed one-to-one and joint qualitative interviews with families of children with JIA (n = 36) presenting to a regional paediatric rheumatology service in the UK. We interviewed 51 family members (including mothers, fathers, patients, grandmothers and an aunt) and 10 health professionals (including orthopaedic surgeons, paediatricians, paediatric immunologist, General Practitioner and nurse) and a teacher involved in the care pathway of these JIA patients. Interviews were audio-recorded and analysed according to the standard procedures of rigorous qualitative analysis - coding, constant comparison, memoing and deviant case analysis. Results The median age of the children was 6 years old (range 1–17), with a spread of JIA subtypes. The median reported time to first PRh MDT visit from symptom onset was 22 weeks (range 4-364 weeks). Three key factors emerged in the pathways to appropriate care: (i) the persistence of symptoms (e.g. ‘change’ such as limp or avoidance of previously enjoyed activities); (ii) the persistence of parents help-seeking actions (e.g. repeat visits to primary and hospital care with concern that their child is not ‘normal’; iii) the experience and skills of health professionals resulting in different trajectories (e.g. no-real-concern-at-this-point or further-investigation-is-required). JIA was more likely to be considered amongst health practitioner if they had prior experiences of a child with JIA (moreso with a ‘protracted pathway’) or exposure to paediatric rheumatology in their training. Conversely JIA was more likely to be overlooked if the child had comorbidity such as learning disability or a chronic illness. Conclusions Care pathways are often ‘turbulent’ prior to a diagnosis of JIA with physical and emotional distress for families. There is need for greater awareness about JIA amongst health care professionals and observations of change (from family and non-health care professionals such as teachers) are key to trigger referral for paediatric rheumatology opinion.

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 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 Access and participation: What factors influence the provision and utilisation of health care services by children with learning disabilities?

2017 ◽  
Vol 41 (S1) ◽  
pp. S452-S452
Author(s):  
A. Rebowska
Keyword(s):  
Health Care ◽  
Learning Disabilities ◽  
Young People ◽  
Intellectual Disabilities ◽  
Health Care Services ◽  
Healthcare Services ◽  
Children And Young People ◽  
Care Services ◽  
Healthcare Needs ◽  
Wide Range

AimsThe aim of this literature review is to explore the range of factors that influence the degree of access to health care services by children and young people with learning disabilities.BackgroundChildren with learning disabilities are at increased risk of a wide range of health conditions comparing with their peers. However, recent reports by UK government as well as independent charities working with children and young people with learning disabilities demonstrated that they are at risk of poor health outcomes as a result of barriers preventing them from accessing most appropriate services.MethodsComprehensive searches were conducted in six databases. Articles were also obtained through review of references, a search of the grey literature, and contacting experts in the field. The inclusion criteria were for studies evaluating access to healthcare services, identification and communication of health needs, organisational aspects impacting on access and utilisation, staff attitudes where they impacted on access, barriers, discrimination in patients with intellectual disabilities age 0–18. The literature search identified a sample of 36 papers. The marked heterogeneity of studies excluded conducting a meta-analysis.ResultsBarriers to access included problems with identification of healthcare needs by carers and healthcare professionals, communication difficulties, the inadequacy of facilities, geographical and physical barriers, organisational factors such as inflexible appointment times, attitudes and poor knowledge base of healthcare staff.ConclusionThe factors identified can serve as a guide for managers and clinicians aiming to improve access to their healthcare services for children and young people with intellectual disabilities.Disclosure of interestThe authors have not supplied their declaration of competing interest.

scholarly journals Innovation Pathways in the NHS: An Introductory Review

2021 ◽  
Author(s):  
Anmol Arora ◽  
Andrew Wright ◽  
Mark Cheng ◽  
Zahra Khwaja ◽  
Matthew Seah
Keyword(s):  
Health Care ◽  
National Health ◽  
Health Care Professionals ◽  
New Technologies ◽  
Care Delivery ◽  
Cost Effective ◽  
Care Models ◽  
Set Up ◽  
The Uk ◽  
Introductory Review

AbstractHealthcare as an industry is recognised as one of the most innovative. Despite heavy regulation, there is substantial scope for new technologies and care models to not only boost patient outcomes but to do so at reduced cost to healthcare systems and consumers. Promoting innovation within national health systems such as the National Health Service (NHS) in the United Kingdom (UK) has been set as a key target for health care professionals and policy makers. However, while the UK has a world-class biomedical research industry, several reports in the last twenty years have highlighted the difficulties faced by the NHS in encouraging and adopting innovations, with the journey from idea to implementation of health technology often taking years and being very expensive, with a high failure rate. This has led to the establishment of several innovation pathways within and around the NHS, to encourage the invention, development and implementation of cost-effective technologies that improve health care delivery. These pathways span local, regional and national health infrastructure. They operate at different stages of the innovation pipeline, with their scope and work defined by location, technology area or industry sector, based on the specific problem identified when they were set up. In this introductory review, we outline each of the major innovation pathways operating at local, regional and national levels across the NHS, including their history, governance, operating procedures and areas of expertise. The extent to which innovation pathways address current challenges faced by innovators is discussed, as well as areas for improvement and future study.

'Place2Be: advancing mental health care in schools' Catherine Roche

2021 ◽  
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Young People ◽  
Public Mental Health ◽  
Chief Executive ◽  
Health Needs ◽  
Memorial Lecture ◽  
Mental Health Needs ◽  
Children And Young People ◽  
Recorded Lecture

Catherine Roche, Chief Executive, Place2Be, recorded on 16 June 2017 at 'The Jack Tizard Memorial Lecture and Conference; Public mental health for children and young people: addressing mental health needs in schools and communities'. ACAMH members can now receive a CPD certificate for watching this recorded lecture.

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