[Show abstract][Hide abstract]ABSTRACT: National reviews have identified the need to provide 24/7 access to clinical expertise especially around the time of end-of-life. In the East of England locally commissioned reviews have recommended improvement in collaboration and joined-up clinical working between voluntary and statutory sectors. This presentation describes a DH £30 million Children's Palliative Care Fund project to develop a managed clinical network of services throughout the East of England and reports how challenges created by cross boundary working can be overcome. A series of externally facilitated workshops, one for nursing leaders and one for medical leaders followed by a joint workshop aimed to develop solutions in an environment where there is little new funding, little recognition of the complexity of children's palliative care, and in a region where there is no specialist in paediatric palliative medicine. Hurdles identified in the workshops were:▸ Ineffective communication processes and information sharing ▸ Acceptability to families of distant advice ▸ Professional preciousness and boundaries ▸ Conflicting priorities ▸ Achieving critical mass of clinicians for a 24/7 rota ▸ Commercial sensitivity - competition among providers ▸ Organisational and clinical governance arrangements ▸ Contractual framework and financial commissioning. Children's Palliative Care is a low volume specialty, and so is best developed by network working across a larger geographical area, utilising the skills of Paediatricians with special expertise, Children's Community Nursing Teams and Children's Hospice Nurses both in their respective local areas but also across a wider geographical patch. Hospice Services, with their cross boundary catchment area, and relationships with NHS Commissioners, are well placed to facilitate such developments. Further thought needs to be given to the balance needed between specialist services (nurse consultants and medical consultants in paediatric palliative medicine) and the more local services, and how the latter can contribute to provision of a specialist service.
Article · Sep 2011 · Supportive and Palliative Care
[Show abstract][Hide abstract]ABSTRACT: 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.
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.
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.
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.
[Show abstract][Hide abstract]ABSTRACT: 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.
Article · Mar 2006 · Journal of Developmental & Behavioral Pediatrics
[Show abstract][Hide abstract]ABSTRACT: 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.
Article · Jan 2006 · International journal of palliative nursing
[Show abstract][Hide abstract]ABSTRACT: 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.
[Show abstract][Hide abstract]ABSTRACT: 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.
A postal survey of 447 families of children with congenital or acquired cardiac disease.
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.
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.