ABSTRACT
INTRODUCCIÓN: La atención al final de la vida de los niños debe ser sensible a las necesidades del niño y de su familia. Necesitamos entender la enfermedad desde la perspectiva de los padres que se enfrentan a la muerte de su hijo, para poder mejorar la calidad y guiar el desarrollo de la atención al final de la vida en Pediatría. MÉTODO: Estudio observacional retrospectivo a través de cuestionario, para evaluar las necesidades, experiencias y satisfacción con la atención recibida, de una muestra de padres que perdieron un hijo por una causa previsible, entre junio de 2014 y junio de 2017. Diferenciamos tres grupos de estudio en función del equipo responsable de la atención al final de la vida, y las diferencias entre el grupo atendido por el equipo de cuidados paliativos pediátricos, el grupo atendido por pediatras no paliativistas y el grupo neonatal, son analizadas. RESULTADOS: De las 80 familias elegibles, 64 pudieron ser contactadas y 28 (43,8%) finalmente completaron el cuestionario. Nuestro estudio muestra experiencias positivas y alta satisfacción de los padres con la atención recibida al final de la vida de su hijo. Las puntuaciones más altas tanto en experiencias como en satisfacción, fueron otorgadas por los padres de los niños atendidos por el equipo de cuidados paliativos pediátricos con diferencias estadísticamente significativas en apoyo a la familia, comunicación, toma de decisiones compartida y atención en torno a la muerte (p < 0,05). CONCLUSIONES: Los padres están satisfechos con la atención recibida al final de la vida de sus hijos, pero la intervención de un equipo específico de cuidados paliativos pediátricos mejora la calidad de la atención al final de la vida en pediatría
INTRODUCTION: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. METHOD: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the roup attended by non-palliative paediatricians, and the neonatal group. RESULTS: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). CONCLUSIONS: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics
Subject(s)
Humans , Male , Female , Infant, Newborn , Infant , Child, Preschool , Child , Adolescent , Young Adult , Adult , Middle Aged , Attitude to Health , Palliative Care/standards , Parents/psychology , Patient Care Team/standards , Pediatrics/standards , Professional-Family Relations , Terminal Care/standards , Health Care Surveys , Needs Assessment , Palliative Care/methods , Palliative Care/organization & administration , Palliative Care/psychology , Patient Care Team/organization & administration , Pediatrics/methods , Quality Assurance, Health Care , Quality Improvement , Retrospective Studies , Terminal Care/methods , Terminal Care/organization & administration , Terminal Care/psychologyABSTRACT
INTRODUCTION: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. METHOD: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. RESULTS: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P<.05). CONCLUSIONS: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics.
Subject(s)
Attitude to Health , Palliative Care/standards , Parents/psychology , Patient Care Team/standards , Pediatrics/standards , Professional-Family Relations , Terminal Care/standards , Adolescent , Adult , Child , Child, Preschool , Female , Health Care Surveys , Humans , Infant , Infant, Newborn , Male , Middle Aged , Needs Assessment , Palliative Care/methods , Palliative Care/organization & administration , Palliative Care/psychology , Patient Care Team/organization & administration , Pediatrics/methods , Quality Assurance, Health Care , Quality Improvement , Retrospective Studies , Terminal Care/methods , Terminal Care/organization & administration , Terminal Care/psychology , Young AdultSubject(s)
Atrial Septum , Hematopoietic Stem Cell Transplantation , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/therapy , Tachycardia , Allografts , Atrial Septum/diagnostic imaging , Atrial Septum/physiopathology , Child , Female , Humans , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/diagnostic imaging , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/physiopathology , Tachycardia/diagnostic imaging , Tachycardia/etiology , Tachycardia/physiopathologyABSTRACT
The aim of the present study is to clarify the association between environmental exposures and non-tuberculous mycobacterial (NTM) lymphadenitis, during the last decade, in a population of children. In children up to 14 years of age in a pediatric tertiary hospital, all cases of NTM lymphadenopathy with a specific microbiological diagnosis, from January 2004 to January 2015, were reviewed. This is a case-control study (1:5 proportion), in which the prevalence of environmental factors between cases and controls was compared by means of a multivariate logistic regression analysis. A total of 24 cases were diagnosed in the aforementioned period, and 18 of them included in the case-control study. Mycobacterium avium-intracellulare was the predominant mycobacterium species isolated (83.3%). Exposure to hens showed a clear trend to be significantly associated with the disease (OR = 4.33; IC95% 0.97-19.41, p = 0.055), with no significant differences for the rest of the risk factors studied. CONCLUSION: M. avium is still the predominant bacteria causing NTM lymphadenitis in children of our region. Contact with hens has been the only risk factor for NTM lymphadenitis detected in the present study. What is Known: ⢠M. avium is the predominant bacteria causing NTM lymphadenitis in children of our region. ⢠There is no consensus on which environmental factors are associated with NTM lymphadenitis in children. What is New: ⢠The only risk factor for NTM lymphadenitis found in the present study was regular contact with hens. Contact with other farm animals was not associated to NTM lymphadenitis.
