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.

scholarly journals Literature Review: Transition From Paediatric to Adult Services in Haemophilia

2015 ◽  
Vol 2 (2) ◽  
pp. 29-51
Author(s):  
Steve Chaplin
Keyword(s):  
Young People ◽  
Literature Review ◽  
Severe Disease ◽  
Transition Process ◽  
Young Person ◽  
Support Network ◽  
Bleeding Disorders ◽  
Term Care ◽  
Joint Health ◽  
Health Care Policies

Abstract The need to prepare children and young people with haemophilia for long-term care in the adult sector has long been accepted and is reflected in many national health care policies. Ideally, transition should be an individualised age- and development-appropriate process, through which each young person is empowered to self-manage, with support from their families and multidisciplinary team (MDT). It is widely recognised that young people who are not engaged in self-management frequently become non-adherent to therapy. For those with haemophilia, this can have a life-long impact on joint health and quality of life. In practice, anecdotal reports from individuals suggest that the transition process is often poorly planned, leaving them feeling lost and unsupported by the healthcare professionals who, until this point, have been core members of their support network. Rarely are the views of young people or their families sought regarding the outcome of their transition process. For those with less severe disease or rarer bleeding disorders, and for girls at the menarche, transition is often not addressed at all. This literature review forms the first part of a project that seeks to identify the outcome measures that can be used to drive a nurse-led initiative improvement in transition for young people with bleeding disorders, through changes in both working practices among health professionals and in the underpinning system, which enables them to put such changes into practice.

scholarly journals Multidisciplinarity in Transition Pathways for Patients With Kidney Disease: The Current State of Play

2021 ◽  
Vol 9 ◽  
Author(s):  
Dorella Scarponi ◽  
Viviana Cammaroto ◽  
Andrea Pasini ◽  
Claudio La Scola ◽  
Francesca Mencarelli ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Young People ◽  
Transition Process ◽  
Renal Diseases ◽  
Adult Services ◽  
Current State ◽  
Transition Clinic ◽  
Developmental Age ◽  
The Usa ◽  
Transition Plan

In the field of medical care, successful transition from pediatric-centered to adult-oriented healthcare can provide a sense of continuity in the development of youth, and prepare them to accept responsibility for and manage their own chronic kidney condition in complete autonomy. The so-called transition process requires the presence of some basic aspects: a multidisciplinary team, which acts as a bridge between child and adult services; a comprehensive clinical, cognitive, psychological, and social change for the young people; the involvement of family and caregivers. Within the framework of transition and chronicity during the developmental age, we selected international papers explaining models which agreed on some important steps in the transition process, although many differences can be observed between different countries. In fact, in Europe, the situation appears to be heterogeneous as regards certain aspects: the written transition plan, the educational programmes, the timing of transfer to adult services, the presence of a transition coordinator, a dedicated off-site transition clinic. We then analyzed some studies focusing on patients with renal diseases, including the first to contain a standardized protocol for transition which was launched recently in the USA, and which seems to have already achieved important positive, although limited, results. In Italy, the issue of transition is still in its infancy, however important efforts in the management of chronic kidney disease have already been initiated in some regions, including Emila Romagna, which gives us hope for the future of many young people.

scholarly journals Epidemiology of visual impairment, sight-threatening or treatment-requiring diabetic eye disease in children and young people in the UK: findings from DECS

2020 ◽  
pp. bjophthalmol-2020-315886
Author(s):  
Maria Carolina Ibanez-Bruron ◽  
Ameenat Lola Solebo ◽  
Phillippa Cumberland ◽  
Jugnoo S Rahi
Keyword(s):  
Young People ◽  
Self Management ◽  
Eye Disease ◽  
Visual Disability ◽  
Children And Young People ◽  
Eye Screening ◽  
Diabetic Eye Disease ◽  
The Uk ◽  
Prevention Of Diabetes

BackgroundWe investigated the incidence and causes of sight-threatening diabetes-related eye disease in children living with diabetes in the UK, to inform the national eye screening programme and enable monitoring of trends.MethodsWe undertook a prospective active national surveillance via the British Ophthalmic Surveillance Unit. Eligible cases were children aged 18 years or younger, with type 1 or 2 diabetes, newly diagnosed between January 2015 and February 2017 with sight-threatening diabetic eye disease.ResultsEight children were reported. The annual incidence of all sight-threatening diabetes-related eye disease requiring referral to an ophthalmologist among children living with diabetes (n=8) in the UK was 1.21 per 10 000 person-years (95% CI 0.52 to 2.39) and was largely attributable to cataract (n=5) 0.76 per 10 000 person-years (95% CI 0.25 to 1.77). The incidence of sight-threatening diabetic retinopathy (n=3) among those eligible for screening (12 to 18 year-olds living with diabetes) was 1.18 per 10 000 person-years (95% CI 0.24 to 3.46). No subjects eligible for certification as visually impaired or blind were reported.ConclusionsSecondary prevention of visual disability due to retinopathy is currently the sole purpose of national eye screening programmes globally. However, the rarity of treatment-requiring retinopathy in children/young people living with diabetes, alongside growing concerns about suboptimal screening uptake, merit new consideration of the utility of screening for primary prevention of diabetes-related morbidity by using the screening event and findings as a catalyst for better diabetes self-management.

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 Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Tamsin Newlove-Delgado ◽  
Sharon Blake ◽  
Tamsin Ford ◽  
Astrid Janssens
Keyword(s):  
Primary Care ◽  
Attention Deficit Hyperactivity Disorder ◽  
Young People ◽  
Attention Deficit ◽  
Adult Life ◽  
Hyperactivity Disorder ◽  
Adult Services ◽  
Specialist Services ◽  
Qualitative Interview Study ◽  
The Uk

Abstract Background Many young people with Attention Deficit Hyperactivity Disorder (ADHD) have impairing symptoms that persist into adulthood, yet only a minority experience continuity of care into adult life. Despite growing emphasis on the primary care role in ADHD management in NICE ADHD and transition guidance, little is known about GPs’ perspectives, which could hamper efforts to improve outcomes for young people leaving children’s services. This study aimed to understand GPs’ experiences of involvement with this group and explore their views on the roles and responsibilities of primary and secondary care in transition, to inform recommendations for policy and practice. Method Qualitative interview study with GPs across the UK. Semi-structured telephone interviews were carried out with 14 GPs recruited through a linked mapping study, social media, and snowballing; data were analysed using thematic analysis. Results In the absence of a smooth transition from child to adult services, many GPs became involved ‘by default’. GPs reacted by trying to identify suitable specialist services, and were faced with the decision of whether to continue ADHD prescribing. Such decisions were strongly influenced by perceptions that prescribing carried risks, and concerns over responsibility, particularly where specialist services were lacking. Participants described variation in service availability, and some highlighted tensions around how shared care works in practice. Conclusion Implementation of NICE guidance is highly variable, with implications for GPs and patients. Risk and responsibility for primary care ADHD prescribing are central concerns that need to be addressed, as is the inclusion of GPs in a planned transition process.

scholarly journals Freaks or Foods: What motivates alternative nutrition and lifestyles?

2020 ◽  
Vol 79 (OCE2) ◽  
Author(s):  
Aspasia Werner ◽  
Antje Risius
Keyword(s):  
Food System ◽  
Dietary Habits ◽  
Transition Process ◽  
Lifestyle Changes ◽  
Alternative Food ◽  
Daily Routine ◽  
Paleolithic Diet ◽  
Transformation Potential ◽  
Alternative Nutrition ◽  
Depth Interviews

AbstractGlobally, the adverse effects of increased animal-protein consumption on the environment, the society, and the economy are a cause of growing societal concern. As a result, issues of food system sustainability have received considerable attention within the national and international community. For the European community, changes in food lifestyles of consumers, in particular a reduced share of animal-based foods within the diet, are of great importance for the establishment of sustainable food supply structures. Meanwhile, a worldwide trend for alternative nutrition and lifestyles is obvious, which is reflected by a growing number of plant-based nutrition styles and craft-foods. Often, alternative nutrition styles are ethically or health motivated. Nonetheless, changes in regard to nutrition are often not consistent. Up to now, research mainly focused on the quantitative and qualitative aspects of food lifestyle changes. However, extreme, alternative nutrition lifestyles seem to be more disciplined with regard to nutrition transformation. Nonetheless, especially extreme food consumption patterns have not been assessed with regard to a long-lasting sustainable transformation potential. However, we propose that a comprehensive framework of these issues must contain information on the specific motivational themes that lead people to make substantial changes in their diets. Hence, the objective of the proposed study is to assess the transforming potential by in-depth interviews with extreme alternative nutrition styles. We aim in gathering knowledge on the content of the motivational dynamics influencing consumers in adapting alternative food lifestyles like raw-foodism, Paleolithic diet, or Anthroposophic diet. The theoretical framework applied is grounded in self-determination theory, a meta-theoretical construct used for explaining motivational change dynamics in humans. The research questions that will be addressed are: “What motivates people to adapt extreme alternative dietary styles?”, “How do identity and individual worldview influence the transition process?” and “Which strategies were applied to successfully implement new dietary habits into daily routine? In-depth interviews, following an experience interview will be conducted with 18 participants who had practiced an alternative food lifestyle for a long-term period. The transcripts of these interviews will be structured using content analysis. Since data collection will take place in May 2019 results cannot be described by deadline for the call of abstracts. Results and conclusion that will be addressed in the FENS Conference will include the motivational drivers for long-lasting transformation potential and discuss the applicability for society and behavior change communication.

scholarly journals Transition outcomes for young people discharged from adolescent medium secure services in England: A qualitative study exploring adolescents’ and carers’ experiences

2021 ◽  
pp. 135910452110260
Author(s):  
Maria I Livanou ◽  
Marcus Bull ◽  
Rebecca Lane ◽  
Sophie D’Souza ◽  
Aiman El Asam ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Transition Process ◽  
Transition Management ◽  
Community Settings ◽  
Structured Interviews ◽  
Face To Face ◽  
Parental Experiences ◽  
Transition Outcomes ◽  
Adult Services

Background Young people in secure services present with multiple vulnerabilities; therefore, transition periods are especially challenging for this group. In this study, we followed up young people discharged from adolescent medium secure services to adult and community settings with the aim to explore transition experiences and outcomes. Methods Participants were recruited from 15 child and adult mental health services in England. We conducted qualitative semi-structured interviews with 13 young people, aged 18–19 years, moving from adolescent medium secure units 2–6 months post-transition, and five carers 1–3 months pre-transition. Thematic analysis was performed to identify predetermined or data-driven themes elicited from face-to-face interviews. Results The findings indicated poor transition outcomes for young people with the most severe mental health symptoms and those who committed serious offences. Three overarching themes were identified: (1) unsettling environmental factors within adult services; (2) experiences of transition management and preparation and (3) parental experiences of transition process and engagement with adult services. Conclusion The findings of this study indicate that young people and carers value ongoing involvement in the transition process by well-informed parallel care. They also highlight the need for a national integrative care model that diverges from the traditional ‘one-size-fits-all’ approach.

scholarly journals Transforming Transition: enhancing practice in haemophilia

2018 ◽  
Vol 5 (1) ◽  
pp. 111-121 ◽  
Author(s):  
Sandra Dodgson ◽  
Mike Holland ◽  
Luke Pembroke ◽  
Kate Khair
Keyword(s):  
Young People ◽  
Self Management ◽  
Clinical Team ◽  
Adult Care ◽  
Clinical Leadership ◽  
Transition Outcomes ◽  
Care Services ◽  
Adult Service ◽  
Working Practices ◽  
The Uk

Abstract Transition is the term used to describe the process of approaching and crossing the chronological boundary between paediatric and adult care services. Transfer of care describes the administrative arrangements associated with moving from a paediatric to an adult service across this boundary. Transforming Transition was a nurse-led initiative designed to facilitate the sharing of knowledge and experience to enhance transition practice in the UK. The aims of the programme were to secure changes in working practices that enabled nurses to drive improved transition outcomes, enhance self-management by people with haemophilia and develop clinical leadership. From the outset of the programme it was clear that there were differences in practice and that sharing practice would be one route to addressing some of these variations. As a result of the knowledge and experience shared through the programme, resources described in this paper are available to all haemophilia centres. Sharing between people with haemophilia, their families and carers, and the haemophilia clinical team have resulted in the development of practical resources that enhance practice within the haemophilia centre. Sharing of practice between nurses and young people with haemophilia at the programme workshops provided a focus for development of local and regional action plans, a framework for reviewing progress, the introduction of transition clinics and improved transition documentation.

scholarly journals In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Anna Price ◽  
Tamsin Newlove-Delgado ◽  
Helen Eke ◽  
Moli Paul ◽  
Susan Young ◽  
...  
Keyword(s):  
Young People ◽  
Adult Adhd ◽  
Qualitative Interviews ◽  
Transition Process ◽  
Evidence Base ◽  
Smooth Transition ◽  
Substantial Contribution ◽  
Good Communication ◽  
Adult Services

Abstract Background Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. Methods Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. Results Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. Conclusions Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.

scholarly journals Taking charge of eczema self-management: a qualitative interview study with young people with eczema

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e044005
Author(s):  
Kate Greenwell ◽  
Daniela Ghio ◽  
Ingrid Muller ◽  
Amanda Roberts ◽  
Abigail McNiven ◽  
...  
Keyword(s):  
Young People ◽  
Health Professionals ◽  
Perceived Control ◽  
Behavioural Change ◽  
Active Role ◽  
Self Management ◽  
Semistructured Interview ◽  
Negative Consequences ◽  
Qualitative Interview Study ◽  
The Uk

ObjectivesTo explore young people’s experiences of eczema self-management and interacting with health professionals.DesignSecondary qualitative data analysis of data sets from two semistructured interview studies. Data were analysed using inductive thematic analysis.SettingParticipants were recruited from the UK primary care, dermatology departments and a community-based sample (eg, patient representative groups, social media).ParticipantsData included 28 interviews with young people with eczema aged 13–25 years (mean age=19.5 years; 20 female).ResultsAlthough topical treatments were generally perceived as effective, young people expressed doubts about their long-term effectiveness, and concerns around the safety and an over-reliance on topical corticosteroids. Participants welcomed the opportunity to take an active role in their eczema management, but new roles and responsibilities also came with initial apprehension and challenges, including communicating their treatment concerns and preferences with health professionals, feeling unprepared for transition to an adult clinic and obtaining treatments. Decisions regarding whether to engage in behaviours that would exacerbate their eczema (eg, irritants/triggers, scratching) were influenced by young people’s beliefs regarding negative consequences of these behaviours, and perceived control over the behaviour and its negative consequences.ConclusionsBehavioural change interventions must address the treatment concerns of young people and equip them with the knowledge, skills and confidence to take an active role in their own eczema management.

Sign in / Sign up

Export Citation Format

Share Document