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 Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review

10.2196/13579 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e13579 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

Background More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611

scholarly journals Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review (Preprint)

2019 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

BACKGROUND More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. OBJECTIVE This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. METHODS We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. RESULTS A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. CONCLUSIONS There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs.

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.

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.

Stand By Me – Flexible and Holistic Support for Young Care Leavers: Smoothing Transitions from Care

2016 ◽  
Vol 41 (3) ◽  
pp. 208-213 ◽  
Author(s):  
Jade Purtell ◽  
Philip Mendes
Keyword(s):  
Young People ◽  
Child Protection ◽  
Care Services ◽  
Out Of Home Care ◽  
Stable Housing ◽  
Care Leavers ◽  
Poor Outcomes ◽  
The Uk ◽  
Ongoing Support ◽  
Personal Advisers

Young people placed in out-of-home care (OHC) through Child Protection in Victoria are formally discharged by the expiration of their care order at the age of 18 years or younger. In contrast, young people in Australia generally live in their family home with parents or carers well into their twenties. Whilst there are a range of leaving care and post-care services funded for care leavers, these supports tend to be temporary and discretionary in contrast to the ongoing support young people receive whilst in care or, in some cases, from family and social networks post care. Numerous studies have documented the developmental challenges experienced by young people leaving state care, and the often poor outcomes faced by this group. The Stand By Me (SBM) programme was developed in Victoria to replicate the ongoing support provided in the UK to care leavers by Personal Advisers who remain available to assist young people until 21 years of age. Evaluation of the SBM programme has shown that ongoing, holistic support, including housing support, has assisted 12 young people through the SBM pilot to access stable housing, address multiple and complex issues, and form trusting relationships with SBM workers that contribute to positive outcomes.

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.

Ethnic Differences in Self-Poisoning Across South London

Crisis ◽  
2014 ◽  
Vol 35 (4) ◽  
pp. 268-272
Author(s):  
Sean Cross ◽  
Dinesh Bhugra ◽  
Paul I. Dargan ◽  
David M. Wood ◽  
Shaun L. Greene ◽  
...  
Keyword(s):  
Black Women ◽  
Data Collection ◽  
White Women ◽  
Population Based ◽  
Care Services ◽  
Self Harm ◽  
Managing Risk ◽  
The Uk ◽  
Incident Cases ◽  
Minority Ethnic

Background: Self-poisoning (overdose) is the commonest form of self-harm cases presenting to acute secondary care services in the UK, where there has been limited investigation of self-harm in black and minority ethnic communities. London has the UK’s most ethnically diverse areas but presents challenges in resident-based data collection due to the large number of hospitals. Aims: To investigate the rates and characteristics of self-poisoning presentations in two central London boroughs. Method: All incident cases of self-poisoning presentations of residents of Lambeth and Southwark were identified over a 12-month period through comprehensive acute and mental health trust data collection systems at multiple hospitals. Analysis was done using STATA 12.1. Results: A rate of 121.4/100,000 was recorded across a population of more than half a million residents. Women exceeded men in all measured ethnic groups. Black women presented 1.5 times more than white women. Gender ratios within ethnicities were marked. Among those aged younger than 24 years, black women were almost 7 times more likely to present than black men were. Conclusion: Self-poisoning is the commonest form of self-harm presentation to UK hospitals but population-based rates are rare. These results have implications for formulating and managing risk in clinical services for both minority ethnic women and men.

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