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.

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 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 Consult, Negotiate, and Involve: Evaluation of an Advanced Communication Skills Program for Health Care Professionals

2018 ◽  
Vol 35 (4) ◽  
pp. 296-307 ◽  
Author(s):  
Jane Coad ◽  
Joanna Smith ◽  
David Pontin ◽  
Faith Gibson
Keyword(s):  
Health Care ◽  
Young People ◽  
Communication Skills ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Cancer Education ◽  
Care Delivery ◽  
Skills Training ◽  
Communication Skills Training ◽  
The Impact

Effective communication is central to children, young people, and their families’ experiences of health care. Most patient complaints in developed health care systems result from ineffective communication, including inadequate information provision, not feeling listened to, failure to value patients concerns, and patients not feeling involved in care decisions. Advanced communication skills training is now embedded within cancer care policy in the United Kingdom and now features prominently within cancer education in many countries. Here, we share findings from a research evaluation of an advanced communication skills training program dedicated to health professionals caring for children and young people with cancer. We evaluated participants’ (n = 59) perceptions of the program, impact on their skills, knowledge, competence, and confidence. An appreciative inquiry design was adopted; data included interviews, precourse-postcourse evaluations, e-mail blog survey, and 360-degree reflective work records. The framework approach underpinned data analysis and triangulation of data sets. Key findings highlighted good and poor practice in health professionals’ engagement with children, young people, and their families; the purpose of communicating effectively was not always consistent with collaborative working. Attending a program helped participants expand their knowledge of communication theories and strategies. Participants valued using simulated scenarios to develop their skills and were keen to use their new skills to enhance care delivery. Our emphasis within this evaluation, however, remained on what was communicated, when and how, rather than to what effect. The impact of programs such as these must now be evaluated in terms of patient benefit.

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 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 &gt;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 OP0278-PARE PROVIDING SUPPORT TO FAMILIES OF CHILDREN NEWLY-DIAGNOSED WITH CHILDHOOD ARTHRITIS: A PATIENT AND PARENT-LED PILOT STUDY TO DEVELOP AND ASSESS ‘A LITTLE BOX OF HOPE’ SUPPORT PACKS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.1-169
Author(s):  
S. Chibnell-Smith ◽  
A. L. Chibnell-Smith ◽  
R. Beesley
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Pilot Study ◽  
Young People ◽  
Musculoskeletal Diseases ◽  
Paediatric Rheumatology ◽  
Free Text ◽  
Newly Diagnosed ◽  
Online Questionnaire ◽  
Children And Young People ◽  
Childhood Arthritis

Background:Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, diagnosed in around 1 in 1,000 children and young people (CYP) under the age of 16. Delays in diagnosis are common [1], awareness is low, and paediatric rheumatological conditions have a considerable impact on young people and their families [2]. A lack of understanding amongst families of newly-diagnosed children leads to uncertainty and anxiety.Objectives:This patient and parent-led project developed a resource pack for parents of CYP newly-diagnosed with JIA, to provide information and support. Following a pilot, feedback from recipients was collated and analysed to help improve future provision.Methods:A young person with JIA identified the need for direct family support. Juvenile Arthritis Research (a UK charity) developed a unique pack of support information, containing resources for both children and their families - called A Little Box Of Hope. This included information about JIA and support services available for families, as well as Kipo (a children’s book about JIA) and accompanying finger puppet. Clinicians at one paediatric rheumatology centre provided information about the packs to newly diagnosed families, who then requested a free box to be posted to them.Following an initial pilot study, recipients were invited to complete a short online questionnaire and provide feedback to allow refinement of the provision.Results:Respondents were asked a series of questions, each on a scale of 1-5. Every respondent gave a score of 5 in response to “What do you think of the idea of A Little Box Of Hope?”Every parent of children under ten years old gave a score of 5 for every item when asked “How useful is each item in your Little Box Of Hope?”Respondents also gave free-text comments:* “It was very well thought out and I felt supported”* “I know so much more about JIA now than I did before. I cannot thank you enough.”* “It was extremely useful and made me feel supported during a very stressful time and this enabled me to support my son more effectively.”* “It made my daughter feel less alone.”Some parents of older children felt that some information specifically for teens would be useful, and a Teen pack is being developed.Conclusion:Recipients of A Little Box Of Hope have found the information useful and feel supported. Following the pilot study, we have developed My JIA, a booklet reviewed by a multi-disciplinary clinical team, with comprehensive information for families affected by JIA. A Teen pack, for children aged around 10 years or older, is being developed to provide targeted support to this group.The COVID-19 pandemic has adversely affected access to healthcare services, increasing the need for remote parent- and charity-provided support through A Little Box Of Hope.As such, we intend to expedite the roll-out of the project across the country building on the success of the pilot project.References:[1]McErlane F, Foster HE, Carrasco R, et al. Trends in Paediatric Rheumatology Referral Times and Disease Activity Indices over a Ten-Year Period among Children and Young People with Juvenile Idiopathic Arthritis: Results from the Childhood Arthritis Prospective Study. Rheumatology (Oxford) 2016;55(7):1225–34.[2]Foster HE, Scott C, Tiderius CJ, et al. Improving Musculoskeletal Health for Children and Young People - A “Call to Action”. Best Pract Res Clin Rheumatol 2020;34(5):101566.[3]Dejaco C, Alunno A, Bijlsma JWJ, et al. Influence of COVID-19 Pandemic on Decisions for the Management of People with Inflammatory Rheumatic and Musculoskeletal Diseases: A Survey among EULAR Countries. Ann Rheum Dis 2020;0:1-9.Disclosure of Interests:None declared

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 The effect of multimodal comprehensive care methodology training on oral health care professionals’ empathy for patients with dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Masaki Kobayashi ◽  
Mio Ito ◽  
Yasuyuki Iwasa ◽  
Yoshiko Motohashi ◽  
Ayako Edahiro ◽  
...  
Keyword(s):  
Health Care ◽  
Oral Health ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Dental Treatment ◽  
Oral Care ◽  
Training Programme ◽  
Comprehensive Care ◽  
Dental Hygienists ◽  
People With Dementia

Abstract Background The prevalence of oral diseases in people with dementia has increased, and patients with dementia have worse oral health than people without dementia. However, in the provision of oral care, these patients often exhibit care-resistant behaviours. Empathy is important for health care professionals who provide dental care for people with dementia. A study was conducted to assess whether a multimodal comprehensive care methodology training programme, Humanitude™, was associated with an improvement in empathy for people with dementia among oral health care professionals. Methods This research was a pre-post prospective study. A total of 45 dentists and dental hygienists participated in a 7-h multimodal comprehensive care methodology training programme. Participants’ empathy for their patients was evaluated with the Jefferson Scale of Physician Empathy-Health Professionals Version (JSPE-HP) before the training and 1 month after the training (primary outcome). Each participant listed 3 patients with poor oral health due to the refusal of usual oral care or dental treatment from his or her clinical practice. The oral health of the 3 care-resistant patients listed by each participant was evaluated by the Oral Health Assessment Tool (OHAT) before the training and 1 month after the training (secondary outcome). Results The post-training response rate was 87% (21 dentists and 18 dental hygienists). From pre-training to post-training, the multimodal comprehensive care methodology training significantly increased the mean empathy score (from 113.97 to 122.95, P < 0.05, effect size = 0.9). Regardless of gender, profession and years of clinical experience, all post-training subgroup scores were higher than the pre-training subgroup scores. The tongue, natural teeth, and oral hygiene scores of patients with dementia who resisted usual oral care or dental treatment, as assessed by the OHAT, were significantly improved compared with those before the training. Conclusions The multimodal comprehensive care methodology training was associated with an improvement in oral health professionals’ empathy for patients with dementia. These findings suggest that randomized controlled trials with large sample sizes will be needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000041687. Registered 4 September 2020 – Retrospectively registered, https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000047586

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