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.

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.

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'.

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.

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.

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.

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.

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.

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.

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.

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.

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.