Home-based Palliative Care For Children Research Articles

Evaluating the Cost-Effectiveness of Home-Based Palliative Care for Children with Special Health Care Needs: A Review Study

Background Due to the increased survival of children with chronic and complex diseases, transferring a part of care provision to home and harnessing the family’s potential with the aim of shortening the length of stay and returning the child to the safe and familiar atmosphere of the family can affect the health system and the family. This study aimed to evaluate the cost-effectiveness of home-based palliative care for children with complex health care needs based on the literature review. Materials and Methods: After selecting the keywords related to the research question, by examining MeSH, EMTREE and the experts’ opinions mentioned in articles, searching the databases PubMed/Medline, EMBASE, Scopus and Web of Science was done through a combination of them. Results: Finally, 11 studies met the inclusion criteria, which were investigated in three groups of methodological features, economic outcomes and indirect outcomes. The reviewed studies were of medium to high quality. Eight were cohort studies, one pre-post study, and 2 economic evaluation studies. Studiesshowed that the decrease in the costs of home-based palliative care for the children in need of special health care, although little, was the result of either reduced hospital stay or the decreased number of hospitalizations. Conclusion In order to set up pediatric palliative care services in Iran, considering the cultural atmosphere and the limited resources of the health system, attention should be paid to the cost effectiveness of care settings and the provided services, and measures should be taken in order to improve the situation of the children with special care needs, based on social conditions.

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

ContextAlthough a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. ObjectivesThe objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. MethodsIn this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0–10). ResultsA total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0–9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. ConclusionIn general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.

Home-based palliative care for children: the case for funding

Paediatric palliative care services have grown up in response to local needs with the result that provision is patchy and in some areas non-existent. Funding for existing services comes from a variety of sources and in the case of teams funded in 2003 from The New Opportunities Fund, there is uncertainty about future provision as funding streams come to an end. This article illustrates how home-based palliative care achieves the objectives of the NHS Plan (DH 2000a) and makes the case for the continuation of paediatric palliative care teams already established through New Opportunities Fund (NOF) funding as these provide a ready made, quality service meeting the government agenda and addressing the needs of patients in a place and at a time to suit them.

TRAINING HEALTH PROFESSIONALS IN CARING FOR DYING CHILDREN AND GRIEVING FAMILIES

In most industrialized countries today, the death of a child is a rare phenomenon. When it occurs, however, it is usually within a hospital setting, after the child has received complex and often long-term medical care aimed at curing or controlling a serious disease. Thus, health professionals are increasingly exposed to the dying process and death of a child with little prior education to help them deal with the particular needs of young patients and minimal preparation in recognizing and handling their personal reactions in the face of death. Comprehensive training programs in pediatric hospice care could help professionals cope with the growing and unique needs of terminally ill children and of their families but these should be differentiated from training programs designed for the terminal care of adult patients. The purpose of this article is to describe and discuss some of the challenges involved in the training of health professionals (pediatricians, nurses, psychologists, social workers, clergy) who wish to provide services to dying children and grieving families. These challenges include (a) definition of educational objectives, (b) selection of teaching methods and content of training, (c) definition and teaching of emotional involvement, (d) support of training participants, (e) promotion of interdisciplinary collaboration, (f) evaluation of the training process and its outcomes, and (g) background and skills of educators. The challenges are discussed and references are made to illustrate how they were met by a 600-hour training program on home-based palliative care for children dying of cancer conducted at the University of Athens.

Home-Based Palliative Care for Children — Part 2: The Benefits of an Established Program

Thirty-four patients have been admitted to our palliative care program since its institution in March 1986. Five were unsuitable and were withdrawn soon after admission. Of the remainder, 22 (75.9%) had central nervous system (CNS) tumors, 5 (17.2%) had myelomeningocoele, 1 (3.45%) had an arteriovenous (AV) malformation, and 1 (3.45%) had a storage disease. Twenty-five (86.2%) have since died and 17 (68%) of these have died at home. In comparison with a similar group of 30 patients studied in a feasibility study prior to the institution of our program, patients admitted to our palliative care program were hospitalized for significantly fewer days during the terminal phase of their illness (p less than 0.05) and a significantly higher proportion died at home (p less than 0.001). Following a survey of the parents of 14 children diagnosed with CNS tumors who died while under our care, we determined that the overall level of satisfaction with the program was high compared to care provided prior to admission to the program (p less than 0.01). Components of the program deemed most satisfactory were (1) being able to care for the child at home (p less than 0.01), (2) having access to a palliative care nurse (p less than 0.05), and (3) having access to a pediatric clinical pharmacologist (p less than 0.05). The most troublesome symptoms occurring in this group of patients were pain, gastrointestinal symptoms, and seizures. Most problems were adequately managed by the parents under the supervision of the team. Eighty percent of the terminal care for these patients was provided at home.(ABSTRACT TRUNCATED AT 250 WORDS)