Advanced care planning 5 years on: An observational study of multi-centred service development for children with life-limiting conditions.

AIM: The purpose of this study was to compare how planning has developed over the 5 years across a range of children's health care services in a single U.K. city. BACKGROUND: Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life-threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed 5 years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards. METHOD: We used a manual retrospective review of health care records, using focused data collection. Inclusion criteria were children who died before the age of 18 years, as a consequence of an LLLT condition, over an 18-month period and had lived locally to a regional children's hospital. RESULTS: The first review (R1) included 48 patients with 114 health care records: median age at death 0 years (range 0 to 18 years). The follow-up review (R2) included 47 patients, with 80 health care records: median age at death 2 years (range 0 to 17 years). The proportion of records containing evidence of a prognostic discussion had risen from 73% (R1) to 91% (R2), p < 0.005. The proportion of health care records with ACP was consistent between R1 and R2 (75% and 72%, respectively). An ACP tool was found to be in regular use in R2 compared with no examples in R1. The acute hospital trust plans were more detailed in R2 than R1. The proportion of cases where preferred location of death matched actual location was stable, around half. CONCLUSIONS: EOLC conversations increased over the 5 years studied. In the acute hospital trust, there is evidence of a better quality ACP although quantity is stable: enabled by the implementation of an ACP tool and education programme. Challenges remain in engaging children and young people in advanced planning.

Who does what? How staff in England and Denmark perceive roles in the coordination of children's inpatient care: a comparison of questionnaire survey data.

AIMS AND OBJECTIVES: To explore and compare staff perceptions of their own and others roles in the coordination of care for children in hospital in Denmark and England. BACKGROUND: The provision of well-coordinated care is a declared aim of health care providers; however, there is no universally held model for achieving this. Staff have developed ways of coordinating care in response to local conditions creating diversity and inconsistency in practice. DESIGN: Survey. METHODS: A structured self-administered questionnaire was used to gather perceptions of clinical staff (n = 85) about who should perform a range of specific care coordination activities. The study sites were two Danish and two English hospitals that provided local and regional children's services. Data were coded and analysis assisted by using Excel spreadsheets. RESULTS: In both countries care coordination was perceived to involve many different staff groups. Of these, nurses and doctors were named most frequently as being responsible for coordination activities. There was consensus between countries about who should perform half the activities listed. Where there was not consensus, this was due to more frequent naming of administrative staff in the English sites and more frequent naming of nurses in the Danish sites. Overall, greater clarity about who should perform specific activities was recorded by the Danish staff. CONCLUSIONS: Staff in England and Denmark hold many shared perceptions in relation to the performance of care coordination activities and their own roles in relation to these. However, the lack of clarity about who should perform specific tasks revealed by the English respondents indicates a greater potential here for omission or duplication of care coordination activities. RELEVANCE TO CLINICAL PRACTICE: Clarification of who should perform specific activities may contribute to improved coordination of care by reducing the opportunity for duplication or omission in the process of care.

Using data and quality monitoring to enhance maternity outcomes: a qualitative study of risk managers' perspectives.

INTRODUCTION: Risk management is a core part of healthcare practice, especially within maternity services, where litigation and societal costs are high. There has been little investigation into the experiences and opinions of those staff directly involved in risk management: lead obstetricians and specialist risk midwives, who are ideally placed to identify how current implementation of risk management strategies can be improved. METHODS: A qualitative study of consultant-led maternity units in an English region. Semistructured interviews were conducted with the obstetric and midwifery risk management leads for each unit. We explored their approach to risk management, particularly their opinions regarding quality monitoring and related barriers/issues. Interviews were recorded, transcribed and thematically analysed. RESULTS: Twenty-seven staff from 12/15 maternity units participated. Key issues identified included: concern for the accuracy and validity of their local data, potential difficulties related to data collation, the negative impact of external interference by national regulatory bodies on local clinical priorities, the influence of the local culture of the maternity unit on levels of engagement in the risk management process, and scepticism about the value of benchmarking of maternity units without adjustment for population characteristics. CONCLUSIONS: Local maternity risk managers may provide valuable, clinically relevant insights into current issues in clinical data monitoring. Improvements should focus on the accuracy and ease of data collation with a need for an agreed maternity indicators set, populated from validated databases, and not reliant on data collection systems that distract clinicians from patient activity and quality improvement. It is clear that working relationships between risk managers, their own clinical teams and external national bodies require improvement and alignment. Further discussion regarding benchmarking between maternity units is required prior to implementation. These findings are likely to be relevant to other clinical specialties.

Development of maternity dashboards across a UK health region; current practice, continuing problems.

OBJECTIVE: To assess the development of local clinical dashboards in line with UK national guidance and to identify ongoing issues being faced by maternity units, across an entire health region, in developing quality assurance systems. STUDY DESIGN: A mixed-methods study involving all consultant-led maternity units in the South West of England Strategic Health Authority region (SWSHA). An electronic survey, followed by semi-structured interviews with the lead obstetrician and risk management midwife (or equivalent) of each maternity unit, to investigate methods employed to monitor outcomes locally, particularly the development of tools including maternity dashboards. Interviews were audio recorded, transcribed and thematically analysed to identify conceptual categories and themes. RESULTS: 12/15 eligible consultant-led maternity units participated in the study and 10/12 (83%) of these used a dashboard. There was an excessive number of non-standard indicators used by the maternity units, with 352 different quality indicators (QIs), covering 37 different indicator categories, with up to 39 different definitions for one particular QI. Issues identified were: an excess of indicators, disproportionate time taken to produce the dashboard, uncertainty surrounding thresholds for alert within the dashboards and a desire for more guidance and standardisation of indicators, and their use. CONCLUSIONS: Following recommendation by the Royal College of Obstetricians and Gynaecologists, maternity dashboards have been widely adopted by maternity units across the SWSHA to provide a local quality assurance system. There is, however, wide variation in both the quality indicators monitored and their definition. There is an urgent requirement for a national and international core set of maternity QIs. Further guidance is also required to inform alert thresholds for adverse outcomes. These perinatal data are collected electronically, and automating the production of a standardised dashboard is both possible and desirable.

Developing practice and staff: enabling improvement in care delivery through participatory action research.

We describe the process and outcomes of a programme to enable improvement in care coordination in a children's hospital. Staff identified care coordination issues they wanted to improve and were facilitated to achieve change using a participatory action research (PAR) approach. The seven participating wards were each offered the same opportunity and yet the degree to which they were able to engage in the process, and the level to which they achieved outcomes, varied considerably. The most successful wards were those with proactive leadership and stable management and where a trusting relationship was established between the staff and the programme facilitator. The least successful were those experiencing ward closure, mergers or changes in management structure. We consider how the different levels of achievement can be understood and what implications this has for using participatory action research to promote service improvement and to facilitate staff development.

Rules and resources: a structuration approach to understanding the coordination of children's inpatient health care.

AIM: This paper presents findings from a multi-method study exploring the process of care coordination in children's inpatient health care. BACKGROUND: Existing work on care coordination is typified by "black-box" type studies that measure inputs to and outcomes of care coordination roles and practices, without addressing the process of coordination. METHOD: Using questionnaires, interviews and observation to collect data in multiple sites in the United Kingdom and Denmark between 1999 and 2005, the study gathered the perceptions of staff and compared these with observed practice. Giddens' structuration theory was used to provide an analytical and explanatory framework. FINDINGS: Current care coordination practice is diverse and inconsistent. It involves a wide range of clinical and non-clinical staff, many of whom perceive a lack of clarity about who should perform specific coordination activities. Staff draw upon a wide range of different material and non-material resources in coordinating care, the use of which is governed by largely tacit and informal rules. CONCLUSIONS: Care coordination can be usefully conceptualized as a "structurated" process--one that is continually produced and reproduced by staff using rules and resources to "instantiate" or bring about care coordination through action. Potentially negative implications of this are manifested in diversity and inconsistency in care coordination practice. However, positive aspects such as the opportunity this provides to tailor care to the needs of the individual patient can be realized.