Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

Child Health Care in Ireland

The Irish health care system is based on a complex and costly mix of private, statutory, and voluntary provisions. The majority of health care expenditure comes from the state, with a significant proportion of acute hospital care funded from private insurance, but there are relatively high out-of-pocket costs for most service users. There is free access to acute hospital care, but not for primary care, for all children. About 40% of the population have free access to primary care. Universal preventive public health services, including vaccination and immunization, newborn blood spot screening, and universal neonatal hearing screening are free. Major health challenges include poverty, obesity, drug and alcohol use, and mental health. The health care system has been dominated for the last 5 years by the impact of the current recession, which has led to very sharp cuts in health care expenditure. It is unclear if the necessary substantial reform of the system will happen. Government policy calls for a move toward a patient-centered, primary care-led system, but without very substantial transfers of resources and investment in Information and Communication Technology, this is unlikely to occur. The paper has been published as part of an overall report of Child Health in Europe: Diversity of Child Health Care in Europe: A Study of the European Paediatric Association/Union of National European Paediatric Societies and Associations http://www.jpeds.com/issue/S0022-3476(16)X0010-8 . (J Pediatr 2016;177S:S87-106).  

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Iowa’s Title V Maternal and Child Health (MCH) Annual Report, 2012

Title V of the Social Security Act is the longest-standing public health legislation in American history. Enacted in 1935, Title V is a federal-state partnership that promotes and improves maternal and child health (MCH). According to each state’s unique needs, Title V supports a spectrum of services, from infrastructure building services like quality assurance and policy development, to gap-filling direct health care services. Title V resources are directed towards MCH priority populations: pregnant women, mothers, infants, women of reproductive years, children and adolescents and children and youth with special health care needs.

SOUTH CAROLINA CHILDREN'S FOSTER CARE REVIEW BOARD SYSTEM ANNUAL REPORT 1990-1991

The South Carolina Foster Care Review Board at the Office of Executive Policy and Programs annually publishes a report with summary of programs, recommendations, demographic and statistical information, and directory of state board and staff.

SOUTH CAROLINA CHILDREN'S FOSTER CARE REVIEW BOARD SYSTEM ANNUAL REPORT 1991-1992

The South Carolina Foster Care Review Board at the Office of Executive Policy and Programs annually publishes a report with summary of programs, recommendations, demographic and statistical information, and directory of state board and staff.

SOUTH CAROLINA CHILDREN'S FOSTER CARE REVIEW BOARD SYSTEM ANNUAL REPORT 1992-1991

The South Carolina Foster Care Review Board at the Office of Executive Policy and Programs annually publishes a report with summary of programs, recommendations, demographic and statistical information, and directory of state board and staff.

Papel de la comunidad internacional en la resocialización de niños soldados desvinculados del ejército de resistencia del señor en Uganda (2002-2013)

El objetivo de esta investigación diagnóstica es evaluar las acciones de la Comunidad Internacional en materia de resocialización de niños soldados desvinculados del Ejército de Resistencia del Señor (ERS) en Uganda durante el periodo de 2002 a 2013. Para ello, se hace un análisis de las causas de la existencia de niños soldados, donde se tiene en cuenta la evolución del concepto de la infancia y las particularidades que éste representa en el contexto africano. Así mismo, son analizados los alcances y limitaciones del modelo de asistencia humanitaria para la protección de la niñez enfatizando en los procesos de resocialización brindados a los niños desvinculados del ERS. Esto con el fin de evidenciar las limitaciones de la actuación de la Comunidad Internacional, y brindar una serie de recomendaciones para la implementación de programas de resocialización enfocados en la infancia.