Evaluation of service user-led workshops in children's palliative care education.

Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluation examined the effect on learning of service user-led workshops as part of a module for final-year children's nursing students and post-registration children's nurses. The workshops focused on the experience of children's palliative care and child bereavement from the parents' perspective. Findings from evaluation data indicated high levels of satisfaction with the workshops and identified three themes: safe space, shift in perspective and enhancing practice. A model of service user facilitated learning describes how these themes can enable learning about children's palliative care. This evaluation suggests that the involvement of service users as partners in healthcare education can be transformative, enabling children's nursing students to examine their own perspectives and consider ways to enhance their future practice.

Seizure management in children requiring palliative care: a review of current practice.

OBJECTIVES: Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice. We compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM). METHODS: Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a 10-year period (2006-2015) in the south-west region of England. RESULTS: We reviewed 19 admissions, in 18 individuals. Six (33%) had a malignancy, nine (50%) had a progressive neurodegenerative condition and three (17%) had a static neurological condition with associated epilepsy. Thirteen (72%) died in their local hospice, four (22%) at home, and one (6%) in hospital. Seventeen of 19 episodes involved the use of subcutaneous or intravenous midazolam infusion, for a mean of 11 days (range 3-27). There was a wide range of starting doses of midazolam, and 9/17 (53%) received final doses in excess of current dose recommendations. Six individuals received subcutaneous phenobarbital infusions, with four of these (67%) receiving final doses in excess of current dose recommendations. Plans for adjustments of infusion rates, maximal doses or alternative approaches should treatment fail were inconsistent or absent. In 16/18 (88%) cases seizures were successfully controlled prior to the day of the child's death. Staff found the experience of managing seizures at end of life challenging and stressful. CONCLUSIONS: Pharmacological approaches to seizure management in end-of-life care are variable, often exceeding APPM dose recommendations. Despite this, safe and effective seizure control was possible in all settings.

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.

Families' priorities in life-limiting illness: improving quality with online empowerment.

OBJECTIVE: Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging. INTERVENTION: MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues. DESIGN: A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months. PATIENTS AND SETTING: Thirty-two families of children with LLIs, attending three children's hospices in one UK region. OUTCOME MEASURES: Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews. RESULTS: 23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions. CONCLUSIONS: The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.

Advance care planning: challenges and approaches for pediatricians.

BACKGROUND: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. OBJECTIVE: Our aim was to review advance care planning for children with life-threatening or life-limiting conditions (LTLLCs) in our local area. METHODS: We conducted a retrospective case note review. Study subjects were from two National Health Service (NHS) Trusts in Bristol in the United Kingdom. Cases were identified from Child Death Overview Panel data. Forty-two sets of case notes were reviewed in relation to 20 children. Measurements included quantitative and qualitative review of advance care planning in relation to standards set by The Association for Children's Palliative Care (ACT). RESULTS: In 25% of cases there was no documented discussion with families about the approach to end of life (EOL). In 25% of cases there was no evidence of an advance care plan, and the content and accessibility of those that did exist was variable. Forty-five percent of families were not offered a choice with regard to location of care (LOC) in the last months of life and 50% were not offered a choice about location of death (LOD). CONCLUSIONS: We hope that acknowledgement of some of the challenges, alongside recognition of the clear benefits, of planning will help pediatricians to deliver this important area 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.

Time off the ward: an action research approach to reducing nursing time spent accompanying children to X-ray.

UNLABELLED: Nursing staff on a busy medical ward were concerned about the amount of time spent off the ward accompanying children to X-ray and for other radiological investigations. They chose this as the focus for an action research project. AIM: To improve the process of accompanying a child to X-ray and reduce the amount of time spent off the ward by nursing staff. METHOD: A facilitated action research approach was used which involved defining the issue, gathering baseline measures, introducing changes in practice and repeating the measures. OUTCOMES: The changes in practice included telephone negotiation of timings between ward staff and X-ray, the inclusion of X-ray in the orientation programme of new staff and students, and the establishment of a link nurse system. Audits, performed before and after changes in practice, demonstrated that the proportion of time spent in X-ray was halved. CONCLUSION: Changes in day-to-day practice, implemented at ward level, can have a measurable impact on routine events and in building co-operative relations between departments. The facilitated action research process provided a structure and direction to the process of improving practice whilst providing an opportunity to learn new skills.

Waiting for surgery after orthopaedic trauma.

Nursing staff on a paediatric surgical ward were concerned about delays experienced by children waiting to go to theatre following orthopaedic trauma, and their families. A facilitated action research approach was used which involved describing the issue, gathering information from a range of sources and introducing changes to the process of care. A flowchart was developed to clarify the stages and the staff involved in admitting a child with orthopaedic trauma for surgery. A white board was introduced to record information on 'trauma' patients. A facilitated action research process offers a flexible and accessible way for staff to develop a range of transferable research and change management skills.

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.

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.