Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care
Allocation; Bed Occupancy; Complex health needs; England; Hospice and Palliative Care Nursing; Hospice Care/organization & administration; Hospices; Humans; Leadership; Nursing Models; Needs Assessment; Palliative Care/organization & administration; Resource Allocation; Respite Care/organization & administration; Technology dependence
BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency tool that enables the hospice to safely and effectively manage the use of beds for planned short breaks (respite care), preserving capacity for children requiring symptom management and end-of-life care. METHODS: A comprehensive literature review and existing tools were used to inform the development of the Martin House Dependency Tool Framework. Training was provided to staff and the tool was piloted before applying it across the hospice caseload. FINDINGS: The tool has been used on 431 children (93.1% of caseload). The tool enabled consistency of assessment and more effective management of resources, due to a contemporaneous understanding of the clinical needs of those on the caseload. CONCLUSION: The tool has enabled consistent and transparent assessment of children, improving safety, effectiveness and responsiveness, and the management of the workforce and resources.
Tatterton M; Martin C; Moore C; Walker C
International Journal of Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2021.27.1.37" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.37</a>
Initiating technology dependence to sustain a child's life: a systematic review of reasons
children; decision-making; life sustaining treatment; Quality of life; Technology dependence; applied and professional ethics
BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions. METHODS: Medline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence. RESULTS: 53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care. CONCLUSIONS: There is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside 'end-of-life' care. This review provides a sound basis for empirical research into the important influences on a child's potential technology dependence.
Alexander D; Quirke MB; Berry J; Eustace-Cook J; Leroy P; Masterson K; Healy M; Brenner M
Journal of Medical Ethics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/medethics-2020-107099" target="_blank" rel="noreferrer noopener">10.1136/medethics-2020-107099</a>
True Resilience: A Look Inside COVID's Effect on Children with Medical Complexity and Their Families
Children with medical complexity; Covid-19; family impact; pediatrics; Technology dependence
PURPOSE OF REVIEW: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant difficulties already experienced by these patients and their families. Increased awareness will lead to improvement in the disparities experienced by this population and improve the ability of healthcare providers to care for them. RECENT FINDINGS: The number of children living with medical complexity is rapidly increasing. They face unique circumstances which can lead to compromise in care. This population is especially at risk for complications related to COVID, so may have a more prolonged admission with more morbidities. Children of ethnic minorities are also more impacted by severe illness and death. Finally, access to palliative care has been limited, which is a huge part in caring for these children who have life-long medical care needs. SUMMARY: Children with medical complexity have unique circumstances and the entirety of the effect of the coronavirus pandemic on this group is unknown. While the medical world has found ways to adapt, these changes can increase disparities for this population. Given the increase in number of children with medical complexity living in the USA, it is important to continue to consider the unique challenges they face in the current pandemic and improve the care delivery for both the child and his or her family.
Mitchell SM
Current Pediatrics Reports
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s40124-021-00254-9" target="_blank" rel="noreferrer noopener">10.1007/s40124-021-00254-9</a>