Managing intractable pain with neuraxial infusion at home.

A case study of a 9-year-old child with complex pain secondary to metastatic liver cancer, who eventually required intrathecal drug delivery (ITDD) of analgesia. Multi-modal symptom control strategies were deployed to achieve the child's and parental wishes for end-of-life care (EoLC) at home using ITDD. The following recommendations are made for nursing practice in paediatric palliative care (PPC); rigorous risk assessment, exemplary communication with the identification of a coordinating team, timely training needs assessment and the delivery of training from hospital based experts in ITDD practice, comprehensive symptom management plan and 24/7 access to specialist palliative care teams were essential for safe nursing practice. In this case, robust risk assessment and mitigations enabled challenges to be safely addressed with a successful outcome, extending the boundaries of PPC home care.

Buccal opioids for breakthrough pain in children with life-limiting conditions receiving end-of-life care.

BACKGROUND: Many palliative care health settings that care for children and young people (CYP) at the end of life use the buccal mucosa as a route of drug administration to manage the sudden onset of symptoms, such as seizures, agitation and dyspnoea, and for breakthrough pain management. The buccal route is a minimally invasive method that delivers fast symptom relief and is useful for those with swallowing impairment or reduced enteral absorption. AIM: This paper reports on a small retrospective study involving 26 CYP who received end-of-life care between January and December 2017 to review the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid. METHOD: A retrospective case note review. FINDINGS: This paper shares the clinical practice experiences from one UK organisation of care for CYP at the end of their lives and contributes to the growing body of pharmacological evidence. CONCLUSION: Buccal opioids, specifically buccal diamorphine, are an effective strategy to treat breakthrough pain or dyspnoea in CYP.

Development of a logic model to support a network approach in delivering 24/7 children's palliative care: part two.

BACKGROUND: This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service approach to be generalised and replicated. RESULTS: Findings demonstrated that the service standards were met and exceeded expectations. Families valued the role, which enabled choice in location of care and perceived the service as a 'lifeline'. DISCUSSION: Team composition with the right level of specialist and advanced nursing skills, anticipating symptom-management planning, clinical supervision and funded on-call processes were key success criteria. The nursing logic model demonstrated relationships between context investments into the service and outcomes for children and families.

The development and evaluation of a holistic needs assessment within children's palliative care.

Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well recognised, as is the value of establishing a robust way of assessing family members' differing needs. A number of assessment tools that consider individuals' holistic needs already exist. These are predominantly for the adult cancer population and exclude consideration of the child in its system. There was therefore a need to develop a tool that would appropriately meet the needs of children and parents who access services provided by a children's hospice. The tool was evaluated qualitatively. Feedback was positive; the experience of professionals was one of concordance with their ethical stance, improved communication, improved documentation and the wish to embed the tool into daily practice.

Development of a logic model to support a network approach in delivering 24/7 children's palliative care: part one.

AIM: This research aimed to develop and evaluate a 24/7 symptom-management service for children with life-limiting conditions and a model for palliative care nursing. STUDY DESIGN: A combination of audit and qualitative and quantitative evaluation. SAMPLE AND SETTING: A consultant nurse-led service (n=5 clinical nurse specialists) provided care and support to children and their families, which spanned a range of settings (home, hospital, hospice) supported by a managed clinical network of consultant paediatricians (n=4) with postgraduate expertise in palliative care. METHODS: A pluralistic evaluation was conducted where the predefined service standards were audited and the predetermined service objectives were evaluated using daily diary data from the nursing team (micro), qualitative and quantitative survey data of stakeholders using the service (mezzo) and family assessment of children's palliative care (CPC) standards across the CPC network (macro).

Characteristics of babies who unexpectedly survive long term after withdrawal of intensive care.

AIM: Occasional babies survive long term after withdrawal of intensive care despite a poor prognosis. We aimed to review in detail the clinical cases, characteristics, and outcomes of neonates with unexpected protracted survival following planned withdrawal of intensive cardiorespiratory support. METHODS: We reviewed infants who unexpectedly survived for more than one week following planned withdrawal of intensive care in two tertiary-level NICUs over a seven-year period. RESULTS: We identified eight long-term survivors (six term, two preterm) between 2007 and 2013. All had a clinical diagnosis of grade 3 hypoxic-ischaemic encephalopathy and severely abnormal electroencephalography and neuroimaging prior to intensive care withdrawal. Intensive care was withdrawn at five days postnatal age (range: two to nine days), but the possibility of protracted survival was discussed beforehand in only two cases. Three infants died before three months of age. Five infants remain alive, currently aged from 2.0 to 6.5 years, and all have significant neurodevelopmental problems. CONCLUSION: Unexpected long-term survival after neonatal intensive care withdrawal occurs occasionally but unpredictably. Significant neurodevelopmental adversity was invariable in those surviving beyond infancy. Ventilator dependency along with severely abnormal electroencephalography and neuroimaging is still compatible with long-term survival. The possibility of protracted survival should be discussed routinely with parents before intensive care withdrawal.

Innovative approach to providing 24/7 palliative care for children.

This study outlines an innovative, English hospice-based service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans. Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children's sector to undertake academic research measuring the impacts of interventions.

How clinical supervision can improve hospice care for children.

Since clinical supervision was introduced into nursing in 1993, it has had a poor uptake, despite evidence of its benefits. This article describes how East Anglia's Children's Hospices implemented a form of clinical supervision called practice supervision throughout its services. Despite initial staff concerns about the implementation, it has been successful and most staff now participate in practice supervision, either as supervisors or supervisees.

Specialist cardiac services: what do young people want?

PURPOSE: With improvements in the surgical and medical management of children with congenital heart disease, the majority are now expected to transition into adult services. Whilst the importance of successful transition is increasingly acknowledged, previous research has identified a number of areas of concern. We therefore wished to elicit the views of young people themselves concerning their requirements from a specialist cardiac service. METHODS: Using an exploratory approach our aims were to increase awareness of the service needs and expectations of young people, identify good practice and areas where communication processes and facilities could be improved, and enhance understanding of transition between paediatric and adult services. Postal questionnaires were sent to 63 young people with congenital cardiac disease aged 17 to 20 years. Open ended questions asked for views and experiences about facilities in the paediatric and adult areas, perceptions of transition between services and suggestions for improvements. Qualitative data were transferred verbatim into electronic format to facilitate coding and theming. RESULTS: Thirty-eight (60.3 percent) completed questionnaires were received. A number of themes, including communication, care processes/caring interactions and environment, emerged regarding areas of satisfaction and dissatisfaction within the paediatric and adult services, together with areas for improvement and important aspects of transition. CONCLUSIONS: Young people's views need to be taken into account at all stages of the patient journey. They want an individualised approach to their care which recognises that they have specific emotional and practical needs. Such findings need to be incorporated into an ongoing model of care.

The needs of families of children with heart disease.

The aim of the study was to assess the perceived needs of children with heart disease of their parents and siblings and to determine the support and services that the families were currently receiving. A mailed survey of 447 families of children with congenital or acquired heart disease was conducted. Completed questionnaires were received from 209 (46.8%) families, 124 (59%) of whom had unmet needs in one or more areas. Information was the area in which there was the greatest degree of expressed need. While the majority of families received support from family and friends, community-based statutory services and support were less adequate. However, a number of families who were not receiving support from community professionals did not want any intervention. It is concluded that interventions need to be targeted so that those families needing additional services and support receive them. Implications for the development of an evidence-based children's cardiac liaison nursing service are discussed.

A survey of professionals delivering secondary care regarding their requirements for paediatric cardiac services as provided by specialists.

The provision of outreach services by paediatric cardiac centres enhances the choice for both parents and professionals. We have conducted a survey to investigate the processes for information and communication at times of interface between specialist and local services for cardiac disease. Based on the responses, we suggest that distance from, and level of contact with, the specialist centre may influence satisfaction and the perceived usefulness of more information. We suggest strategies to increase contact, and make more effective targeting of resources.

Living with congenital or acquired cardiac disease in childhood: maternal perceptions of the impact on the child and family.

AIMS: Firstly to assess maternal perceptions of the impact of congenital or acquired cardiac disease on the child, parents, and siblings, and secondly to determine whether there were differences between different diagnostic groups, or between those with and without other health problems, with a view to informing the development of a cardiac liaison nursing service for children. METHODS: A postal survey of 447 families of children with congenital or acquired cardiac disease. RESULTS: Completed questionnaires were received from 209 (46.8 percent) families. The cardiac lesion was perceived to have a negative impact on many areas of family life for about one fifth of the sample, particularly in those families where the child was perceived to be more ill. Family relationships, however, were affected in a very different way, with 43 percent reporting that family members had become closer, and only 8 percent that they had been "pulled apart" by the condition of their child. There were a number of differences in the perceived impact of the cardiac malformation on school and family life between children with different diagnoses, with this being particularly evident for families of the patients who had undergone transplantation. When the sample was divided according to the presence or absence of other problems with health, however, many of these differences between the diagnostic groups disappeared. CONCLUSIONS: Irrespective of the severity of the disease, the presence of a cardiac malformation has an impact on everyday life for a significant number of children and families, particularly if associated with other problems with health. Implications for targeting resources to reduce morbidity in these children and families are discussed.

Seeking and using families' views to shape children's hospice services.

Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus groups followed by lunch to discuss how staff communicated with them about their child's care, their family support needs, and how staff liaised with other professionals and organizations. There was general commendation of hospice services (in-house and community), but parents wished for more quantity and consistency with all elements of the care model. There was tension between respite and end-of-life care needs. Parents considered that the myth of hospices being 'just for death' needed dispelling and wanted other professionals to be more aware of its role, and the choice of earlier referral. Transition, both age and prognosis related, caused concern, with anxiety about long-term future or loss of support when prognosis improved. Parents also wanted better information about practical help and psycho-social support as well as up-to-date information about their child's treatment and management from all care providers.