scholarly journals Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e039670
Author(s):  
Ivy Jiang ◽  
Gabor Major ◽  
Davinder Singh-Grewal ◽  
Claris Teng ◽  
Ayano Kelly ◽  
...  
Keyword(s):  
Young People ◽  
Rheumatic Disease ◽  
Lupus Erythematosus ◽  
Social Inclusion ◽  
Transition Planning ◽  
Personal Goals ◽  
Therapeutic Alliances ◽  
Face To Face ◽  
Professional Boundaries ◽  
Mediterranean Fever

ObjectivesTo describe the experiences, priorities, and needs of patients with rheumatic disease and their parents during transition from paediatric to adult healthcare.SettingFace-to-face and telephone semistructured interviews were conducted from December 2018 to September 2019 recruited from five hospital centres in Australia.ParticipantsFourteen young people and 16 parents were interviewed. Young people were included if they were English speaking, aged 14–25 years, diagnosed with an inflammatory rheumatic disease (eg, juvenile idiopathic arthritis, juvenile dermatomyositis, systemic lupus erythematosus, panniculitis, familial Mediterranean fever) before 18 years of age. Young people were not included if they were diagnosed in the adult setting.ResultsWe identified four themes with respective subthemes: avoid repeat of past disruption (maintain disease stability, preserve adjusted personal goals, protect social inclusion); encounter a daunting adult environment (serious and sombre mood, discredited and isolated identity, fear of a rigid system); establish therapeutic alliances with adult rheumatology providers (relinquish a trusting relationship, seek person-focused care, redefine personal–professional boundaries, reassurance of alternative medical supports, transferred trust to adult doctor) and negotiate patient autonomy (confidence in formerly gained independence, alleviate burden on patients, mediate parental anxiety).ConclusionsDuring transition, patients want to maintain disease stability, develop a relationship with their adult provider centralised on personal goals and access support networks. Strategies to comprehensively communicate information between providers, support self-management, and negotiate individualised goals for independence during transition planning may improve satisfaction, and health and treatment outcomes.

scholarly journals TRAINING OF EDUCATORS FOR THE SOCIAL INCLUSION AND TRAINING OF UNACCOMPANIED FOREIGN MINORS IN SPAIN

2020 ◽  
Vol 1 (2) ◽  
pp. 146-165
Author(s):  
José González-Monteagudo ◽  
Alberto De la Portilla ◽  
Mario León-Sánchez
Keyword(s):  
Young People ◽  
Social Inclusion ◽  
Online Course ◽  
Professional Roles ◽  
Short Term ◽  
Face To Face ◽  
The Social ◽  
Unaccompanied Foreign Minors ◽  
And Training ◽  
Specific Profile

The article begins with an introduction to the Spanish context, focusing on migration, diversity, and the specific profile and needs of immigrant minors arriving alone in Spain, which raises the new professional roles of social educators working in intercultural diversity contexts. The second section of the article deals with educators' training of immigrant minors and young people, a relatively neglected and under-served field. Sections three and four are dedicated to present two training experiences we have carried out, on a four-month online course for under-age educators and a short-term face-to-face course on the same topic

Agents of Practice at the Public Library’s Reference Desk

2013 ◽  
Author(s):  
Mary Cavanagh
Keyword(s):  
Public Libraries ◽  
Face To Face ◽  
Professional Boundaries ◽  
The Public ◽  
Reference Librarians ◽  
Practice Perspective ◽  
The Face ◽  
Reference Et

The face to face interactions of reference librarians and reference assistants are studied from a theoretical practice perspective. Rather than reinforcing professional boundaries, the results of this analysis support reference practice in public libraries as a highly relational activity where reference “expertise” retains a significant subjectivist, relational dimension.Les interventions en personne des bibliothèques de référence et des adjoints à la référence sont étudiées du point de vue de la pratique théorique. Plutôt que de renforcer les frontières interprofessionnelles, les résultats de cette analyse appuient l'idée que les pratiques de référence en milieu public sont des activités hautement relationnelles où l'expertise de la référence conserve une dimension subjectiviste et relationnelle. 

scholarly journals AB0419 THE COEXISTENCE OF FAMILIAL MEDITERRANEAN FEVER (FMF) IN SYSTEMIC LUPUS ERYTHEMATOSUS (SLE) PATIENTS - A CROSS SECTIONAL STUDY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1509.1-1510
Author(s):  
T. Klein ◽  
S. Tiosano ◽  
A. Chohen ◽  
H. Amital
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Familial Mediterranean Fever ◽  
Lupus Erythematosus ◽  
Cross Sectional Study ◽  
Review Of The Literature ◽  
Sectional Study ◽  
Systemic Lupus ◽  
Cross Sectional ◽  
Mediterranean Fever ◽  
Age And Sex

Background:Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease characterized by multisystem inflammatory lesions affecting many organ systems in the body. Familial Mediterranean fever (FMF) is an autosomal recessive disease of chronic autoimmune inflammation characterized by frequently relapsing self-limiting fever and inflammation that may be localized in peritoneum, pleura, joint or skin.1Previous studies have described the similarity of clinical symptoms of FMF among SLE patients. However, the literature on this topic is inconsistent and based mostly on case reports.2-4Objectives:To examine the proportions of coexistence of FMF among SLE patients compared to the general population. We hypothesized that the proportion of FMF among SLE patients is higher than the general population.Methods:This cross-sectional study used the Clalit Health Services database, the largest Health Maintenance Organization in Israel, serving 4,400,000 members. SLE patients were compared to age- and sex-matched controls. Chi- was used for univariate analysis.Results:The study included4886 SLEpatients and 24430 age- and sex-matched controls. The SLE group had a significantly higher proportion of FMF patients compared to non-SLE controls (0.68% and 0.21% respectively; p < 0.001).Table 1. All study populationTable 1.SLE patients and matched controls basic characteristicsNo SLESLEp.overallN=24430N=4886Age51.2±16.551.2±16.51.000Gender: Female20100 (82.3%)4020 (82.3%)1.000FMF52 (0.21%)33 (0.68%)<0.001Table 2. StratificationTable 2.comparison of FMF patients with and without SLEFMF without SLEFMF with SLEp.overallN=52N=33Age44.6±13.750.5±17.70.106Gender: Female45 (86.5%)26 (78.8%)0.523Conclusion:FMF was found to be more common amongst SLE patients compared to matched controls.The current study results suggest that the occurrence of SLE turn patients with an appropriate genetic and environmental setting to develop also FMF. This cross-sectional study sheds light on the coexistence of these two diseases, autoimmune and autoinflammatory.References:[1]Kucuk A, Gezer IA, Ucar R, Karahan AY. Familial mediterranean fever.Acta Medica (Hradec Kralove). 2014;57(3):97-104.[2]Lidar M, Zandman-Goddard G, Shinar Y, Zaks N, Livneh A, Langevitz P. SLE and FMF: A possible negative association between the two disease entities–report of four cases and review of the literature.Lupus. 2008;17(7):663-669.[3]Erten S, Taskaldiran I, Yakut ZI. Are systemic lupus erythematosus patients carrying MEFV gene less prone to renal involvement? report of three cases and review of the literature.Ren Fail. 2013;35(7):1013-1016.[4]Shinar Y, Kosach E, Langevitz P, et al. Familial mediterranean Fever gene (MEFV) mutations as a modifier of systemic lupus erythematosus.Lupus. 2012;21(9):993-998.Disclosure of Interests: :None declared

scholarly journals Reintroduction of immunosuppressive medications in pediatric rheumatology patients with histoplasmosis: a case series

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Rachel A. Brown ◽  
Fatima Barbar-Smiley ◽  
Cagri Yildirim-Toruner ◽  
Monica I. Ardura ◽  
Stacy P. Ardoin ◽  
...  
Keyword(s):  
Rheumatic Disease ◽  
Lupus Erythematosus ◽  
Histoplasma Capsulatum ◽  
Case Series ◽  
Organ Damage ◽  
Necrosis Factor Alpha ◽  
Pulmonary Histoplasmosis ◽  
Immunosuppressive Medications ◽  
Biologic Dmard ◽  
Factor Alpha

Abstract Background Children with rheumatic diseases (cRD) receiving immunosuppressive medications (IM) are at a higher risk for acquiring potentially lethal pathogens, including Histoplasma capsulatum (histoplasmosis), a fungal infection that can lead to prolonged hospitalization, organ damage, and death. Withholding IM during serious infections is recommended yet poses risk of rheumatic disease flares. Conversely, reinitiating IM increases risk for infection recurrence. Tumor necrosis factor alpha inhibitor (TNFai) biologic therapy carries the highest risk for histoplasmosis infection after epidemiological exposure, so other IM are preferred during active histoplasmosis infection. There is limited guidance as to when and how IM can be reinitiated in cRD with histoplasmosis. This case series chronicles resumption of IM, including non-TNFai biologics, disease-modifying anti-rheumatic drugs (DMARDs), and corticosteroids, following histoplasmosis among cRD. Case presentation We examine clinical characteristics and outcomes of 9 patients with disseminated or pulmonary histoplasmosis and underlying rheumatic disease [juvenile idiopathic arthritis (JIA), childhood-onset systemic lupus erythematosus (cSLE), and mixed connective tissue disease (MCTD)] after reintroduction of IM. All DMARDs and biologics were halted at histoplasmosis diagnosis, except hydroxychloroquine (HCQ), and patients began antifungals. Following IM discontinuation, all patients required systemic or intra-articular steroids during histoplasmosis treatment, with 4/9 showing Cushingoid features. Four patients began new IM regimens [2 abatacept (ABA), 1 HCQ, and 1 methotrexate (MTX)] while still positive for histoplasmosis, with 3/4 (ABA, MTX, HCQ) later clearing their histoplasmosis and 1 (ABA) showing decreasing antigenemia. Collectively, 8/9 patients initiated or continued DMARDs and/or non-TNFai biologic use (5 ABA, 1 tocilizumab, 1 ustekinumab, 3 MTX, 4 HCQ, 1 leflunomide). No fatalities, exacerbations, or recurrences of histoplasmosis occurred during follow-up (median 33 months). Conclusions In our cohort of cRD, histoplasmosis course following reintroduction of non-TNFai IM was favorable, but additional studies are needed to evaluate optimal IM management during acute histoplasmosis and recovery. In this case series, non-TNFai biologic, DMARD, and steroid treatments did not appear to cause histoplasmosis recurrence. Adverse events from corticosteroid use were common. Further research is needed to implement guidelines for optimal use of non-TNFai (like ABA), DMARDs, and corticosteroids in cRD following histoplasmosis presentation.

Physiotherapy via telehealth for acute respiratory exacerbations in paediatric cystic fibrosis

2021 ◽  
pp. 1357633X2199820
Author(s):  
Cloe Benz ◽  
Anna Middleton ◽  
Alison Elliott ◽  
Adrienne Harvey
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Adverse Events ◽  
Travel Time ◽  
Standard Care ◽  
Limiting Factor ◽  
Specialist Care ◽  
Face To Face ◽  
Respiratory Exacerbations ◽  
Hybrid Group

Introduction The demand for Hospital in the Home has increased, especially as an avenue for treatment of respiratory exacerbations. However, a limiting factor of Hospital in the Home efficiency is excess travel. Telehealth can potentially increase in-home access to specialist care such as physiotherapy. This study examined clinical outcomes achieved with a hybrid telehealth model and assessed safety and efficiency. Method This study was an observational benchmarking study of Hospital in the Home physiotherapy episodes of care during respiratory exacerbations between January 2017–June 2019. The participants were young people aged 8–18 years, with cystic fibrosis receiving intravenous antibiotics and bi-daily physiotherapy. The intervention was physiotherapy via either a hybrid model (1× telehealth, 1× face-to-face session) or standard care (2× face-to-face sessions). The outcomes were frequency of return to at least 95% of baseline percentage predicted forced expiratory volume in the first second (ppFEV1), ppFEV1 change, adverse events, travel time and distance saved. Results There were 82 episodes of Hospital in the Home; 41 hybrid and 41 standard care. Return to at least 95% of baseline was achieved in 49% of the hybrid group and 32% of standard care. Median ppFEV1 change was +6% for the hybrid group and +2% standard care. There were no adverse events. Estimated travel time and distance saved was 16,520 min and 12,301.2 km. Conclusion Preliminary information supports a hybrid telehealth physiotherapy model as an alternative to standard care for young people with cystic fibrosis during an exacerbation. Safety of telehealth in conjunction with home visits favoured its use to improve efficiency and capacity without added risk.

scholarly journals O21 The incidence of COVID-19 among children with rheumatic diseases receiving biological agents

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Nadezhda Tsurikova ◽  
Elena Ligostaeva ◽  
Vadim Avdeenko ◽  
Nataliya Kobzeva ◽  
Irina Tsiganok ◽  
...  
Keyword(s):  
Rheumatic Diseases ◽  
Lupus Erythematosus ◽  
Biological Agents ◽  
Tnf Receptor ◽  
The Past ◽  
Different Types ◽  
Mediterranean Fever ◽  
Positive Results ◽  
Single Center Observational Study

Abstract Background/Aims  During the COVID-19 pandemic, analysis of the incidence of COVID-19 among patients suffering from rheumatic diseases and receiving therapy with biological agents remains relevant. Methods  This single-center observational study included 118 children suffering from various rheumatic diseases and receiving therapy with anti-rheumatic drugs and biological agents. In this research, we analyzed the incidence of CIVID-19 and the frequency of documented contact with SARS-CoV-2 in the period from 01.03.2020 to 11.10.2020 (32 weeks). The results were analyzed using descriptive statistics. Results  Among 118 children, there were 28 (24%) boys and 90 (76%) girls, average age 10.3±4.2. 104 (88.2%) patients had different types of juvenile idiopathic arthritis (JIA), 2 (1.6%) children had systemic lupus erythematosus (SLE), 2 (1.6%) patients had juvenile dermatomyositis (JDM), 1 (1%) child had ANCA-associated vasculitis, 6 (5%) patients had familial Mediterranean fever (FMF), 2 (1.6%) children had deficiency of adenosine deaminase 2 (DADA2), 1 (1%) child had TNF receptor-associated periodic syndrome (TRAPS). In this group of patients 94 (79%) patients were treated with methotrexate, 1 (1%) - azathioprine, 3 (2%) patients received hydroxychloroquine, 6(5%) - mycophenolate mofetil, 4 (3%) - sulfasalazine, 14(11%) children received prednisone, 6(5%) - cyclosporine A. All children included in this study received biological agents for more than 1 year, the distribution of biological agents among patients was as follows: 41(34%) - etanercept, 33(28%) - adalimumab, 24 (20%) - tocilizumab, 7 (6%) - canakinumab, 3 (2%) - abatacept, 4 (3%) - golimumab, 6 (5%) - rituximab. Out of 118 children, 4 (3%) patients had flu-like symptoms and positive results of PCR tests for COVID-19 (1 patient was treated with etanercept, 1 - adalimumab, 1 - tocilizumab, 1 - rituximab), none of the patients had signs of SARS-CoV-2 pneumonia. 10 (8%) patients had documented contact with COVID-19: among this patients 2 children had flu-like symptoms, positive results of PCR tests and absence of COVID-19 pneumonia (one of this patient was treated with adalimumab, another one - with rituximab), one more patient was treated with tocilizumab and had positive PCR test without any symptoms of COVID-19; other 7 children had negative PCR tests and didn’t have any signs of COVID-19. Conclusion  Among our patients with various rheumatic diseases treated with biological agents there were no registered severe cases of COVID-19. Over the past period (32 weeks of follow-up) 3% of children with COVID-19 were identified and 8% patients had documented contact with COVID-19, but we suppose it is too early to make conclusions about the degree and severity of COVID-19 among children suffering from rheumatic diseases and receiving various biological agents. Further follow-up is needed to better understand the risk and impact of COVID-19 among children with rheumatic diseases and receiving therapy with biological agents. Disclosure  N. Tsurikova: None. E. Ligostaeva: None. V. Avdeenko: None. N. Kobzeva: None. I. Tsiganok: None. K. Skorobogatova: None. A. Motkina: None.

What Is Social Inclusion? Insights From Interventions With Youth Across Migration Systems

2021 ◽  
Vol 8 (2) ◽  
pp. 143-151
Author(s):  
Colette Daiute ◽  
Bengi Sullu ◽  
Tünde Kovács-Cerović
Keyword(s):  
Young People ◽  
Social Welfare ◽  
21St Century ◽  
Power Relations ◽  
Social Inclusion ◽  
Sense Making ◽  
21St Century Education ◽  
Behavioral Assessments ◽  
Supportive Interventions ◽  
Migration Systems

Social inclusion is a goal of 21st-century education and social welfare, yet research with violently displaced youth leaves gaps in its meaning. Social inclusion, a societal aim, lacks the perspectives of youth at its center. Given the pressures and power relations involved in learning how young people think and feel about social injustices and the support they need, developmental researchers must find innovative ways to study youth experiences and intentions in relation to environments, especially environments that threaten young lives. Emerging research highlights how displaced youth, peers along their journeys, and adults guiding supportive interventions make audible the meaning of social inclusion. Policy paradigms would benefit from research on sense-making in interventions rather than from emphasizing behavioral assessments and assimilation to local norms, as implied by social inclusion.

What Does International Research Identify as the Best Practice Housing Pathways for Young People Transitioning from Out of Home Care?

2021 ◽  
pp. 234930032110643
Author(s):  
Jacinta Chavulak ◽  
Philip Mendes
Keyword(s):  
Young People ◽  
Home Care ◽  
Affordable Housing ◽  
Best Practice ◽  
Transition Planning ◽  
Policy And Practice ◽  
Out Of Home Care ◽  
Extended Care ◽  
Care Leavers ◽  
Housing Pathways

Young people transitioning from out-of-home care (often called care leavers) are globally a disadvantaged group who can be particularly vulnerable to experiences of housing instability and homelessness. This article presents a scoping review of international scholarly literature pertaining to housing pathways for care leavers from 2015–2020. The 15 publications identified were analysed according to location, methodology, sample accessed, key findings regarding housing pathways and outcomes, and recommendations for policy and practice reform. Our findings suggest that good transition planning, continuing support from responsible adults, the availability of safe and affordable housing and extended care till at least 21 years should enable more positive housing transitions.

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