Views and experiences of treatment transition in haemophilia: A scoping review

2020 ◽  
Author(s):  
Rachel Snodgrass ◽  
Vera Araújo-Soares ◽  
Bronia Arnott ◽  
Kay-Anne Rooney
Keyword(s):  
Young People ◽  
Scoping Review ◽  
Healthcare Professionals ◽  
Research Question ◽  
Secondary Data ◽  
Transition Process ◽  
Barriers And Facilitators ◽  
Self Management ◽  
Haemophilia A ◽  
Prophylaxis Therapy

Rationale The present scoping review seeks to gain insight into what is known regarding the transition of treatment responsibility, specifically for individuals with haemophilia. A focus will be placed on the barriers and facilitators experienced towards the treatment transition process for families and young people engaged in prophylaxis therapy. A scoping review affords an opportunity to map out and provide an overview of the emerging literature given the newly emerging enquiry into treatment transition in haemophilia.Objective The current scoping review will aim to address the following research question: “What barriers and facilitators are experienced by young people, caregivers and healthcare professionals towards treatment transition in haemophilia?”The subsequent objectives were identified to address the research question: • To provide a detailed representation of the range of available literature for barriers and facilitators experienced by the array of actors involved, towards treatment transition and successful self-management in haemophilia. • To visually map the existing evidence (in diagrammatic form) in alignment with the objective of the review.• To consider clear recommendations for future directions of research based on the identified knowledge gaps. Recommendations will ultimately seek to support optimal transition from family-orientated to self-management, and paediatric to adult services. Method: Articles published in peer-reviewed journals are eligible for inclusion. Both primary research studies and secondary data analysis will be accepted. No restrictions are placed upon study design. Articles which explored treatment transition independently or alongside other related concepts such as quality of life, self-care and treatment adherence will be eligible. The current review aims to include articles sampling children and/or adults with haemophilia, their caregivers and/or healthcare professionals involved in haemophilia care. Articles sampling individuals living with haemophilia can have a diagnosis of haemophilia A or B. Articles can define “treatment” as regular prophylaxis therapy or on-demand administration following a bleeding episode. Information Sources The following four databases will be searched: •Medline•Scopus•PsycINFO •CINAHLAt this stage, no date or language restrictions have been implemented in the electronic searches for studies to allow an accurate estimate of the variety of literature available. Additionally, no exclusions regarding the publication status have been applied. Data charting aims to include: • Study aim•Healthcare professional group •Barriers to treatment transition•Facilitators to treatment transition•Future actions for supporting treatment transition

scholarly journals Addressing implementation considerations when developing universal interventions for speech, language and communication needs in the ordinary classroom: a protocol for a scoping review

2021 ◽  
Vol 4 ◽  
pp. 41
Author(s):  
Aoife Gallagher ◽  
Carol-Anne Murphy ◽  
Johanna Fitzgerald ◽  
James Law
Keyword(s):  
Young People ◽  
Scoping Review ◽  
Implementation Research ◽  
Research Question ◽  
Health Interventions ◽  
Children And Young People ◽  
Childhood Population ◽  
Language Needs ◽  
Outcomes For Children ◽  
Communication Needs

Background: Understanding the factors that influence the implementation of health interventions in the context of education is essential to improving outcomes for children and young people with speech and language needs (SLCN). Yet implementation considerations have not been adequately addressed when developing interventions for this context. The aim of this paper is to present a protocol for a scoping review of existing implementation frameworks that might guide SLCN intervention research in schools.  Methods: In accordance with scoping review guidelines, the study will be conducted in six phases: (1) identification of the research question, (2) identification of potentially relevant studies of Implementation Science frameworks, (3) study screening and selection, (4) charting and extracting data from identified frameworks, (5) collating, summarising and reporting the results and (6) consultation with stakeholders. Two reviewers will conduct the screening and extraction stages independently. Identified frameworks will be collated, and described, and constructs from the IS frameworks will be categorised using domains from the Consolidated Framework for Implementation Research. A draft IS model will be proposed based on the findings of the scoping review. Conclusions: The findings of this review will provide guidance for researchers in addressing implementation considerations when developing universal interventions for SLCN in the ordinary classroom, and ultimately will contribute towards improving outcomes for this vulnerable childhood population.

scholarly journals Addressing implementation considerations when developing universal interventions for speech, language and communication needs in the ordinary classroom: a protocol for a scoping review

2021 ◽  
Vol 4 ◽  
pp. 41
Author(s):  
Aoife Gallagher ◽  
Carol-Anne Murphy ◽  
Johanna Fitzgerald ◽  
James Law
Keyword(s):  
Young People ◽  
Implementation Science ◽  
Scoping Review ◽  
Research Question ◽  
Health Interventions ◽  
Children And Young People ◽  
Childhood Population ◽  
Language Needs ◽  
Outcomes For Children ◽  
Communication Needs

Background: Understanding the factors that influence the implementation of health interventions in the context of education is essential to improving outcomes for children and young people with speech and language needs (SLCN). Yet implementation considerations have not been adequately addressed when developing interventions for this context. The aim of this paper is to present a protocol for a scoping review of existing implementation frameworks that might guide SLCN intervention research in schools.  Methods: In accordance with scoping review guidelines, the study will be conducted in six phases: (1) identification of the research question, (2) identification of potentially relevant studies of Implementation Science frameworks, (3) study screening and selection, (4) charting and extracting data from identified frameworks, (5) collating, summarising and reporting the results and (6) consultation with stakeholders. Two reviewers will conduct the screening and extraction stages independently. Identified frameworks will be collated, and described, and constructs from the IS frameworks will be categorised using domains from the Consolidated Framework for Implementation Research. A draft implementation science model will be proposed based on the findings of the scoping review. Conclusions: The findings of this review will provide guidance for researchers to begin to address implementation considerations when developing and facilitating the uptake of universal interventions for SLCN in the ordinary classroom, and ultimately can contribute towards improving outcomes for this vulnerable childhood population.

scholarly journals P1 “She used to be Tigger and then she was Eeyore”: A qualitative study with children and young people with CFS/ME, exploring predictors of recovery and future treatment needs

BJS Open ◽  
2021 ◽  
Vol 5 (Supplement_1) ◽  
Author(s):  
Philippa Clery ◽  
Jennifer Starbuck ◽  
Amanda Laffan ◽  
Esther Crawley ◽  
Philippa Clery
Keyword(s):  
Young People ◽  
Healthcare Professionals ◽  
Holistic Approach ◽  
Chronic Fatigue ◽  
Barriers And Facilitators ◽  
Structured Interviews ◽  
Treatment Needs ◽  
Children And Young People ◽  
Children And Parents ◽  
Definition Of

Abstract Introduction Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and severely disabling. At least 15% of children do not recover by 12 months. We do not know why some children recover and others do not. This study aimed to explore the barriers to recovery experienced by adolescents with CFS/ME. Methods I recruited adolescents (aged 11-17 years old, with CFS/ME, who were still disabled by CFS/ME after 12 months of treatment), their parents and specialist healthcare professionals were recruited from a single specialist CFS/ME service in the UK. I conducted semi-structured interviews and focus groups to explore views on treatment received including barriers and facilitators, as well as views on their future. I used thematic analysis grounded in the views of the patients to identify patterns (themes) in the data. Results I recruited 12 children and young people, 11 parents and 7 specialist healthcare professionals. The following themes were identified (with barriers and facilitators apparent in each theme): 1. “awareness and support” from CFS/ME services, GPs, schools and family. Poor awareness resulted in increased time-to-diagnosis, school disengagement, stigmatising experiences, and significant stress for children and parents; family support, school understanding, and validation from the service was a ‘life saver’. 2. “CFS/ME is bigger than the fatigue” described the importance of managing CFS/ME as a ‘long and hard’ chronic illness with secondary health, social and educational consequences. Participants called for holistic therapies that focus on the broader definition of recovery and facilitate re-integration into ‘normal life’. 3. “Balancing routine and control in adolescents”: Children differed on whether routines and pacing were helpful or exacerbated low mood. 4. “Individualised” treatment was important: treatment combinations were helpful in different ‘phases of recovery’, which varied depending on social context, motivations, school input, and co-morbidities. Conclusion Adolescents identified common facilitators and barriers to recovery and a desire for treatment that takes social factors into account, with a holistic approach using a broader definition of recovery. Children and parents identified a need for better awareness, communication and integration within and between services, including GPs and schools.

scholarly journals The Implementation of an mHealth Intervention (ReZone) for the Self-Management of Overwhelming Feelings Among Young People (Preprint)

2018 ◽  
Author(s):  
Chloe Edridge ◽  
Jessica Deighton ◽  
Miranda Wolpert ◽  
Julian Edbrooke-Childs
Keyword(s):  
Mental Health ◽  
Young People ◽  
Controlled Trial ◽  
Implementation Strategies ◽  
Barriers And Facilitators ◽  
Self Management ◽  
Mhealth Intervention ◽  
Digital Interventions ◽  
Mental Health Difficulties ◽  
Randomised Controlled

BACKGROUND The association between mental health difficulties and academic attainment is well established. There is increasing research on mobile health (mHealth) interventions to provide support for the mental health and education of young people. However, nonadoption and inadequate implementation of mHealth interventions are prevalent barriers to such trials. OBJECTIVE The aim of this study was to bridge this gap and examine the implementation of an mHealth intervention, ReZone, for young people in schools. METHODS Preliminary data for 79 students collected as part of a larger trial were analyzed. We additionally conducted postimplementation consultations with teachers. RESULTS ReZone was used 1043 times by 36 students in the intervention arm during the study period. Postimplementation teacher consultations provided data on implementation strategies, barriers, and facilitators. CONCLUSIONS Implementation strategies, barriers, and facilitators for digital interventions need to be considered to limit nonadoption and inadequate implementation in larger trials. Important considerations involve tailoring the characteristics of the intervention to the requirements of the intended user group, the technology itself, and the organization in which it is implemented. CLINICALTRIAL International Standard Randomised Controlled Trial Number: 13425994; http://www.isrctn.com/ISRCTN13425994

scholarly journals Barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people at end-of-life: a mixed methods systematic review protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (7) ◽  
pp. e030566 ◽  
Author(s):  
Katie Greenfield ◽  
Simone Holley ◽  
Daniel Eric Schoth ◽  
Emily Harrop ◽  
Richard Howard ◽  
...  
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Young People ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Assessment Tool ◽  
Barriers And Facilitators ◽  
Cochrane Library ◽  
Synthesis Methods ◽  
Children And Young People

IntroductionThis protocol describes the objective and methods of a systematic review of barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people (ICYP) at end-of-life.Methods and analysisThe Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey will be electronically searched. Reference screening of relevant articles and inquiries to researchers in the field will be undertaken. Studies will be selected if they apply qualitative, quantitative or mixed-methods designs to explore barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in ICYP at end-of-life.Articles will be screened by title and abstract by one reviewer with a second reviewer assessing 10% of the articles. Both reviewers will read and screen all remaining potentially relevant articles. For included articles, one reviewer will extract study characteristics and one will check this.Both reviewers will undertake independent quality assessments of included studies using established and appropriate checklists including The Critical Appraisal Skills Programme Qualitative Checklist; The evaluative criteria of credibility, transferability, dependability and confirmability; The Quality Assessment Tool for Quantitative Studies, and The Mixed Methods Appraisal Tool. Data synthesis methods will be decided after data extraction and assessment.Ethics and disseminationThis review will inform our understanding of symptom management in ICYP at end-of-life. The findings will be reported in a peer-reviewed journal and presented at conferences. The study raises no ethical issues.PROSPERO registration numberCRD42019124797

scholarly journals Protocol for a scoping review to understand what is known about how GPs make decisions with, for and on behalf of patients who lack capacity

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e038032
Author(s):  
Simon Jack Ogden ◽  
Richard Huxtable ◽  
Jonathan Ives
Keyword(s):  
Primary Care ◽  
Content Analysis ◽  
Scoping Review ◽  
Healthcare Professionals ◽  
Research Question ◽  
Best Interests ◽  
England And Wales ◽  
Directed Content Analysis ◽  
Allied Healthcare ◽  
Made In

IntroductionGeneral Practitioners (GPs) and allied healthcare professionals working in primary care are regularly required to make decisions with, for and on behalf of patients who lack capacity. In England and Wales, these decisions are made for incapacitated adult patients under the Mental Capacity Act 2005, which primarily requires that decisions are made in the patient’s ‘best interests’. Regarding children, decisions are also made in their best interests but are done so under the Children Act 1989, which places paramount importance on the welfare of the child. Decisions for children are usually made by parents, but a GP may become involved if he or she feels a parent is not acting in the best interests of the child. Internationally, including elsewhere in the UK, different approaches are taken. We hypothesise that, despite the legislation and professional guidelines, there are many different approaches taken by GPs and allied healthcare professionals in England and Wales when making these complex decisions with, for and on behalf of patients who lack capacity. To better understand what is known about how these decisions are made, we plan to undertake a scoping review and directed content analysis of the literature. While the majority of decisions made in primary care are made by GPs, for completeness, this review will include all allied healthcare professionals working in primary care.Methods and analysisTo ensure a wide breadth of literature is captured, a scoping review will be undertaken as described by Arksey and O’Malley (2005). A five-stage approach will be taken when conducting this review: (1) identifying the research question; (2) identifying relevant papers; (3) study selection; (4) data extraction and (5) summarising and synthesis. The final stage will include a directed content analysis of the data to help establish the cross-cutting themes.Ethics and disseminationThe scoping review will be disseminated through conferences and peer-reviewed publications. This scoping review is the first (mapping) phase in a proposed larger study to explore how GPs make decisions with, for and on behalf of those who lack capacity. Qualitative research with GPs, patients and their families will follow, before all the results are synthesised using an ‘empirical bioethics’ methodology.

scholarly journals Barriers and facilitators for the sexual and reproductive health and rights of young people in refugee contexts globally: A scoping review

PLoS ONE ◽  
2020 ◽  
Vol 15 (7) ◽  
pp. e0236316
Author(s):  
Veronika Tirado ◽  
Josephine Chu ◽  
Claudia Hanson ◽  
Anna Mia Ekström ◽  
Anna Kågesten
Keyword(s):  
Young People ◽  
Reproductive Health ◽  
Scoping Review ◽  
Sexual And Reproductive Health ◽  
Barriers And Facilitators

scholarly journals Young people’s experience of transition from paediatric to adult haemophilia care in the UK

2018 ◽  
Vol 5 (1) ◽  
pp. 122-129 ◽  
Author(s):  
Luke Pembroke ◽  
Sandra Dodgson
Keyword(s):  
Young People ◽  
Sudden Change ◽  
Transition Process ◽  
Lifestyle Changes ◽  
Self Management ◽  
Daily Routine ◽  
Bleeding Disorders ◽  
Term Care ◽  
Adult Services ◽  
The Uk

Abstract People with haemophilia and other bleeding disorders, such as von Willebrand’s Disease (vWD), are frequently diagnosed in childhood. There is, therefore, a recognised need to prepare children and young people with these conditions for transfer to long-term care in the adult sector. The Transforming Transition programme was designed to facilitate the sharing of knowledge and experience to enhance transition practice in the UK. The aim of the programme was to secure change in working practices to enable nurses to drive improved transition outcomes, enhance self-management by people with haemophilia and develop clinical leadership. As part of the programme, we captured young people’s views of their transition experiences by means of a series of structured interviews conducted with young people identified through the patient association. Interviews revealed that transition tended to take place around the age of 16 but could be delayed in response to individual circumstances. The transition process did not always appear to be planned, with many participants reporting an abrupt or sudden change between paediatric and adult teams and/or centres. Those with severe haemophilia tended to be well educated and prepared by their paediatric teams to be confident in managing their condition from an early age. They would learn to self-infuse between the ages of 5-11, and reported feeling confident in tailoring their treatment around their daily routine. Experience of transition to adult services varied, with about half describing it as fairly well planned. For those with bleeding disorders such as vWD, there was rarely a transition process. These individuals and people with mild haemophilia described having less exposure to opportunities to learn self-management and appeared to experience issues which coincided with significant lifestyle changes, such as leaving home and attending university. This highlights the importance of ensuring that patients across the spectrum of bleeding disorders are adequately supported in the lead-up to and transfer to adult services. The interviews also reinforce the need to continue to address the specific needs of women with bleeding disorders as they transfer to adult services. The learning from this phase of the Transforming Transition programme was submitted to NICE as part of the consultation on its guideline.

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