RESUMEN
RATIONALE: Volunteers are essential to the functioning of palliative care programs and serve as important members of the hospice team. They devote much time, effort, and diverse skills and talent to enhance the quality of care at Roger's House--a pediatric palliative care hospice. OBJECTIVES: To evaluate volunteering in a pediatric palliative care hospice and to assess the level of satisfaction from the perspective of hospice volunteers. METHODS: A survey was sent to all active Roger's House volunteers. Questions were related to their demographics, their overall impression of their volunteering experience, and 47 closed (fixed-choice) statements, divided into 6 parts: 1) Orientation; 2) Training; 3) Feedback/Performance; 4) Communication; 5) Social Contacts; and 6) Value and Respect. Each statement was rated by the participants using a six-point Likert rating scale. RESULTS: Volunteers fully completing the survey were 159 online and 4 on paper, giving a response rate of 66%. The greater number (66, 40.5%) of respondents were 50 years or older and they were mostly female (141, 86.5%). Successes identified included the volunteers' orientation, training, and feedback and performance. Challenges identified included certain aspects of communication, social contacts, and respect/value for the volunteer. CONCLUSION: Volunteers at Roger's House are generally satisfied with their volunteer position and the environment in which they work. Greater insight into volunteer satisfaction and factors that bring feelings of reward and/or dissatisfaction to the volunteers have allowed Roger's House to identify informed and effective interventions to improve the quality of and satisfaction with the hospice volunteer program.
Asunto(s)
Hospitales para Enfermos Terminales , Satisfacción en el Trabajo , Enfermería Pediátrica , Evaluación de Programas y Proyectos de Salud , Voluntarios/organización & administración , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ontario , Voluntarios/educación , Adulto JovenRESUMEN
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario for the 12-month period both before and after services at Roger's House (RH, a paediatric hospice) was made available. The opening and operation of RH for providing respite care resulted in a minimization of operational costs (n = 66 patients, mean decrease of $4,251.95 per month per patient).
Asunto(s)
Costos y Análisis de Costo , Hospitales para Enfermos Terminales/economía , Cuidados Paliativos/economía , Pediatría/economía , Cuidados Intermitentes/economía , Niño , Femenino , Humanos , Masculino , Estudios Retrospectivos , Estadísticas no ParamétricasAsunto(s)
Portadores de Fármacos/efectos adversos , Hipersensibilidad a las Drogas/terapia , Lactasa/uso terapéutico , Intolerancia a la Lactosa/terapia , Cuidados Paliativos , Anomalías Múltiples/tratamiento farmacológico , Preescolar , Anomalías Congénitas/tratamiento farmacológico , Humanos , MasculinoRESUMEN
OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN: Retrospective review of medical records combined with a survey of each program. SETTING: Seven pediatric palliative care programs based in tertiary care settings and 1 freestanding children's hospice. PARTICIPANTS: The programs cared for 317 children during 2002, of whom 123 died during that year. An additional 32 children died by the end of 2003. MAIN EXPOSURE: Pediatric palliative care program. RESULTS: Nearly half (48.6%) of the patients were younger than 5 years, and almost half of these were younger than 1 year. Primary diagnoses were disorders of the nervous system (39.1%), malignancies (22.1%), and conditions arising in the perinatal period or congenital anomalies (22.1%). Most of the children (43.9%) died at home, with those centers reporting more comprehensive home care services having the highest percentage of home deaths. From a national perspective, between 5% and 12% of the children who could benefit from palliative care received services from 1 of these programs. CONCLUSIONS: Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs.
Asunto(s)
Cuidados Paliativos/estadística & datos numéricos , Canadá , Niño , Preescolar , Anomalías Congénitas/mortalidad , Estudios Transversales , Humanos , Lactante , Neoplasias/mortalidad , Enfermedades del Sistema Nervioso/mortalidad , Estudios RetrospectivosRESUMEN
Before implementing a pain education program, the Canadian Association of Nurses in Oncology conducted a national survey on cancer pain management. The survey focused primarily on adult cancer pain and a second survey was undertaken to describe the supports in place across Canada for best practice pediatric cancer pain management. Twenty-eight pediatric cancer centers responded to a survey that was composed of 48 questions about the types of supports that are in place related to pain assessment, management, and pain-related staff and family education. Results of the survey indicated that, for the most part, children have access to the components of best practice pain management. In addition, areas of strength and areas that need to be further developed were identified and the implications for the findings discussed.