Palliative Care in High and Low Resource Countries
palliative care; pediatric palliative care; coordination; pain management; human development index; individualized care planning
Palliative Care (PC) is defined by the World Health Organization (WHO) as a support given by multiple disciplines in order to improve the quality of life of both patients and their caregivers, throughout the disease course, from diagnosis to end-of-life. PC aims to prevent and treat symptoms and side effects of the disease and its treatment. PC is well developed in most high income countries; however in most low income settings, where, approximately 80% of patients with cancer requiring PC care for advanced disease live, PC services are still uncommon. Health indicators monitoring global PC development are policy, education, use of medicines, service provision and professional activity. Globally PC development may be categorized as: Group 1 (no known hospice-PC activity), Group 2 (capacity-building activity), Groups 3a Isolated PC provided, 3b Generalized PC provided, 4a hospice-PC services at a stage of integration into regular service provision and 4b hospice-PC services at a stage of advanced integration into regular service provision. Spirituality is an essential element of patient-centered PC. The use of complementary and traditional medicine (CTM) in Middle Eastern countries is widespread. There are wide discrepancies in cancer care and PC in many regions in the world. The Individualized Care Planning and Coordination (ICPC) Model is designed to facilitate the advance care planning with continuity of all the measures like symptom control or emotional, social and spiritual care of both the patient and the family during the disease steps like relapse or end of life.
Kebudi R; Cakir FB; Silbermann M
Current Pediatric Reviews
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/10.2174/1573396317666210405143649" target="_blank" rel="noreferrer noopener">10.2174/1573396317666210405143649</a>
Robotic and clinical evaluation of upper limb motor performance in patients with Friedreich's Ataxia: an observational study
children; Rehabilitation; Neurosciences & Neurology; Engineering; coordination; therapy; rating-scale; Accuracy; and Rating of Ataxia; cerebellar-ataxia; Friedreich's ataxia; Kinematics; movement; multiple-sclerosis; quantitative-evaluation; Reaching task; rehabilitation; Robot-mediated evaluation; Scale for the Assessment; smoothness; Smoothness; stroke recovery; Submovements; Upper limb; tone and motor problems; tool development; scale development; InMotion Arm Robot
Background: Friedreich's ataxia (FRDA) is the most common hereditary autosomal recessive form of ataxia. In this disease there is early manifestation of gait ataxia, and dysmetria of the arms and legs which causes impairment in daily activities that require fine manual dexterity. To date there is no cure for this disease. Some novel therapeutic approaches are ongoing in different steps of clinical trial. Development of sensitive outcome measures is crucial to prove therapeutic effectiveness. The aim of the study was to assess the reliability and sensitivity of quantitative and objective assessment of upper limb performance computed by means of the robotic device and to evaluate the correlation with clinical and functional markers of the disease severity. Methods: Here we assess upper limb performances by means of the InMotion Arm Robot, a robot designed for clinical neurological applications, in a cohort of 14 children and young adults affected by FRDA, matched for age and gender with 18 healthy subjects. We focused on the analysis of kinematics, accuracy, smoothness, and submovements of the upper limb while reaching movements were performed. The robotic evaluation of upper limb performance consisted of planar reaching movements performed with the robotic system. The motors of the robot were turned off, so that the device worked as a measurement tool. The status of the disease was scored using the Scale for the Assessment and Rating of Ataxia (SARA). Relationships between robotic indices and a range of clinical and disease characteristics were examined. Results: All our robotic indices were significantly different between the two cohorts except for two, and were highly and reliably discriminative between healthy and subjects with FRDA. In particular, subjects with FRDA exhibited slower movements as well as loss of accuracy and smoothness, which are typical of the disease. Duration of Movement, Normalized Jerk, and Number of Submovements were the best discriminative indices, as they were directly and easily measurable and correlated with the status of the disease, as measured by SARA. Conclusions: Our results suggest that outcome measures obtained by means of robotic devices can improve the sensitivity of clinical evaluations of patients' dexterity and can accurately and efficiently quantify changes over time in clinical trials, particularly when functional scales appear to be no longer sensitive.
Germanotta M; Vasco G; Petrarca M; Rossi S; Carniel S; Bertini E; Cappa P; Castelli E
Journal of Neuroengineering and Rehabilitation
2015
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/10.1186/s12984-015-0032-6" target="_blank" rel="noreferrer noopener">10.1186/s12984-015-0032-6</a>
End of life care experience at the peadiatic oncology unit at the uganda cancer institute: What role can oncology nurses play?
quality of life; dying; adolescent; pediatrics; advanced cancer; cancer patient; cancer survival; cancer chemotherapy; cancer diagnosis; mortality rate; coordination; conference abstract; human; child; female; male; adult; diagnosis; terminal care; clinical article; palliative therapy; pediatric patient; multidisciplinary team; oncology nurse; clinician
Mulyowa I
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Parental experiences with a paediatric palliative care team: A qualitative study
case management; palliative therapy; Pediatrics; qualitative research; Child; Clinical Article; concrete; coordination; expectation; Female; Human; Interview; Male; thematic analysis
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective. Design: An interpretative qualitative interview study using thematic analysis was performed. Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases. Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support. Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.
Verberne LM; Schouten-van Meeteren AYN; Bosman DK; Colenbrander DA; Jagt CT; Grootenhuis MA; van Delden JJM; Kars MC
Palliative Medicine
2017
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/10.1177/0269216317692682" target="_blank" rel="noreferrer">10.1177/0269216317692682</a>
Aspects Of Palliative Care In Child Neurology
Neurology; Palliative Therapy; Bereavement Counseling; Central Nervous System Tumor; Child; Child Care; Chromosome Aberration; Controlled Study; Coordination; Diagnosis; Family Study; Germany; Human; Human Experiment; Metabolic Disorder; Neurologic Disease; Only Child; Pain; Palliative Care; Quality Of Life; Spiritual Care; Terminal Care
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or terminal conditions and their families) concept in four groups: (i) conditions for which treatment may be feasible but can fail (ii) conditions in which premature deaths is inevitable but where long periods of participation in normal activities may be feasible (iii) progressive conditions without curative options where treatment is exclusively palliative (iv) irreversible but non-progressive conditions causing likelihood of premature death through complications. Neurological LLCs in children are represented in all four groups according to the ACT concept. Furthermore neuropediatric LLCs comprise up to 70% of the diagnoses in PPC subject to the criteria of a neurological disease entity (inclusion of CNS tumors, chromosomal anomalies, metabolic disorders etc.). The clinical course in neuropediatric LLCs differs from the course of oncological LLCs. Therefore the needs of the affected children, their families and their requirements of the PPC providers are different. In Germany PPC is often recognized solely as an end of life care. Typically, PPC accomplishes the objective of improving quality of life through symptom management e.g., pain control, coordination of care, communication and by providing psychosocial and spiritual support to the child and the family also in bereavement counseling. Within in the last years three different levels of specialized PPC have been established in Germany.
Nolte-Buchholtz S; Von Der Hagen M
Neuropediatrics
2016
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).
DOI: 10.1055/s-0036-1583743