Gathering expert opinion to inform benchmarks to support transitional care.

This study aimed to (1) explore views of known experts leading on transition, (2) gather insights on the essential features of transitional care models and (3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops ( n = 20) and used a telephone interview ( n = 1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders' discussions about transition was that 'things have become stuck'. Themes included: professionals' attitudes towards and knowledge about young people and transition, organizational barriers and 'lack of joined-up thinking' between services. Our work offers further insight into experts' perceptions of transition services within the United Kingdom. It is clear that there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.

"We Sometimes Hold on to Ours" - Professionals' Views on Factors that both Delay and Facilitate Transition to Adult Care.

BACKGROUND: The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed "care gap." Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed, policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change in practice. OBJECTIVE: This study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, and the barriers and facilitators to transition. METHODS: This was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analyzed using qualitative content analysis. RESULTS: Eight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team). CONCLUSION: It is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition, so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our "Benchmarks for Transition from Child to Adult Health Services." We offer these benchmarks to inform and guide the practice of others and illustrate their potential for use in the context of the findings shared here.

Transition From Child to Adult Care--'It's Not a One-Off Event': Development of Benchmarks to Improve the Experience.

The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. A multi-site, multi-staged study was undertaken to identify the key aspects of a transitional programme of care for young people. Through a process of mapping, which involved drawing on primary and secondary data, a clinical practice-benchmark tool was developed. Benchmarks are a health care quality performance measurement 'tool'. They provide clinical teams with standards that services can measure themselves against to see how they are doing. They are used in a comparing and sharing activity, using a structured and systematic approach, to share best practice. They offer a mechanism to look at processes, and provide an opportunity to analyse skills and attitudes, which may be the hidden narrative in benchmarking. This paper describes steps in the development of benchmarks for transition to adult care, often associated with low patient and family satisfaction. Qualitative data were collected through focus groups, workshops and interviews from 13 young people with long-term health conditions, 11 parents, 36 professionals and 21 experts leading on transition within the United Kingdom. Transcripts were analysed using qualitative content analysis. For young people and their parents/carers to experience timely and effective transition, eight factors and their associated indicators of best practice were developed from the primary and secondary data and refined through an iterative process. We recommend their use to clinical teams to inform system level strategies as well as evaluation programmes.

Potentially preventable infant and child deaths identified at autopsy; findings and implications.

PURPOSE: The purpose of the study was to determine the proportion of pediatric deaths investigated by HM Coronial autopsy which were potentially preventable deaths due to treatable natural disease, and what implications such findings may have for health policies to reduce their occurrence. METHODS: A retrospective study of 1779 autopsies of individuals between 7 days and 14 years of age requested by HM Coroner, taking place in one specialist pediatric autopsy center, was undertaken. Cases were included if they involved a definite natural disease process in which appropriate recognition and treatment was likely to have affected their outcome. Strict criteria were used and cases were excluded where the individual had any longstanding condition which might have predisposed them to, or altered the recognition of, acute illness, or its response to therapy. RESULTS: Almost 8% (134/1779) of the study group were potentially preventable deaths as a result of natural disease, the majority occurring in children younger than 2 years of age. Most individuals reported between 1 and 7 days of symptoms before their death, and the majority had sought medical advice during this period, including from general practitioners within working hours, and hospital emergency departments. Of those who had sought medical attention, around one-third had done so more than once (28%, 15/53). Sepsis and pneumonia accounted for the majority of deaths (46 and 34% respectively), with all infections (sepsis, pneumonia and meningitis) accounting for 110/134 (82%). CONCLUSION: Around 10% of pediatric deaths referred to HM Coroner are potentially preventable, being the result of treatable natural acute illnesses. In many cases medical advice had been sought during the final illness. The results highlight how a review of autopsy data can identify significant findings with the potential to reduce mortality, and the importance of centralized investigation and reporting of pediatric deaths.

A training needs analysis of neonatal and paediatric health-care staff in a tertiary children's hospital.

INTRODUCTION: Despite clinical advances in neonatal and paediatric palliative care, there is limited educational provision to underpin practice. To develop appropriate educational content, the needs of staff working in this area must be identified. AIM: To explore the educational needs of staff working with families with palliative or end-of-life care requirements. METHODS: A training needs analysis (TNA) explored the perceived knowledge, confidence, and support of neonatal and paediatric health professionals in a tertiary children's hospital in London. RESULTS: An online Likert scale TNA was completed by 111 participants. The results indicated that the staff did not feel educationally prepared in their working areas, despite having regular contact with families with palliative or end-of-life care issues. DISCUSSION: Understanding the educational needs of staff can underpin the development of appropriate educational interventions. These modules require evaluation to determine their impact on health professionals' knowledge and confidence.