Problemi etici dell’assistenza al neonato ad alto rischio

[Ethical problems in the management of high risk newborn]Recent progress in neonatal care have significantly improved the prognosis and chances of survival of critically ill or extremely preterm neonates and have modified the limits of viability. However, in some circumstances, when the child’s death can only be briefly postponed at the price of severe suffering, or when survival is associated with severe disabilities and an intolerable life for the child and his/her parents, it may not be appropriate to utilize all the armamentarium of neonatal intensive care. In such circumstances the limitation of intensive treatments (withholding or withdrawing) could represent a more human and reasonable alternative. This article examines and discusses the ethical principles underlying such difficult decisions, the most frequent situations in which these decisions might be considered, the role of parents in the decisional process and what are the opinions and behaviours of neonatologists of numerous European neonatal intensive units

Gli stili di coping al dolore in età evolutiva e la loro influenza sull’indice di stress genitoriale: uno studio sperimentale.

Introduzione. L’esperienza di cura di un figlio, durante una patologia grave-acuta o cronica-rappresenta un forte fattore di rischio nello sviluppo di un vissuto stressante e di un distress psicologico nei genitori. Il livello di stress e di difficoltà di adattamento alla malattia del bambino presenta notevoli differenze a seconda di diverse variabili, tra cui il sesso dei genitori (le madri, infatti sembrano maggiormente risentirne e presentano maggiori difficoltà nell’adattamento) e la natura della malattia del bambino (a seconda che si tratti di malattie croniche che non comportano pericolo di vita oppure, malattie che possono comportare pericolo di vita o forte compromissione della sua qualità) (Dewey e Crawford, 2007). Obiettivi e metodi. Sulla base di questi elementi, il presente lavoro intende verificare, in particolare, se le diverse caratteristiche delle patologie di cui sono affetti i figli dei genitori del gruppo di ricerca provochino differenze significative sul livello di stress genitoriale e, verificare se l’“essere madri” rappresenti un fattore di incidenza negativa sul livello di stress genitoriale (Hung et al., 2003). Un ultimo aspetto indagato è la correlazione ipotizzabile tra richieste del bambino (di vicinanza del genitore, di presenza, di holding, strategie che il bambino adotta per contrastare l’esperienza del dolore) e il livello di stress del genitore. Il campione della ricerca è composto da 27 genitori (16 madri e 11 padri con età media di 35,3 anni con DS pari a 2,1) di 26 bambini, tra i 7 e gli 11 anni (età media 8,7 con DS pari a 1,5) di cui 14 affetti da cancro e 12 affetti da patologie croniche (asma, diabete, malattie infiammatorie gastro-intestinali). I costrutti indagati sono lo stress genitoriale, tramite il PSI-SF (Parenting Stress Index – Short Form, Abidin et al., 1995 in Guarino et al., 2008), le strategie di coping nel genitore, tramite il COPE-NVI (Coping Orientation to Problem Experienced – Nuova Versione Italiana, Sica et al., 1997) e le strategie di coping al dolore nel bambino tramite il PPCI (Pediatric Pain Coping Inventory, Varni, Waldron, 1996, nella traduzione italiana di Bonichini e Axia, 2000). Risultati. I risultati evidenziano un elevato livello di stress genitoriale (tra 95° e 100° percentile) in tutti i genitori del campione, con una tendenza maggiore nei genitori di bambini con patologia cronica; il livello di stress totale diminuisce con l’aumentare della presenza di strategie di coping adattive nei genitori: questi elementi sono statisticamente legati con l’aumentare dell’età del bambino e con il diminuire, nello stesso, della presenza di strategie di coping vissute come molto faticose dai genitori quali quelle legate alla continua ricerca di supporto sociale e vicinanza del genitore. Analizzando le medie, anche se non in presenza di significatività statistica, si può notare una media totale di utilizzo delle diverse strategie di coping al dolore nel bambino minore nel gruppo di piccoli pazienti oncologici rispetto al gruppo di bambini con patologie croniche. Risulta, inoltre costantemente maggiore la media dei punteggi di stress in tutti i domini analizzati dal Parenting Stress Index – Short Form, nelle madri rispetto ai padri. Conclusioni. In conclusione, riuscire a comprendere quali siano le strategie di coping preferite dai bambini mettendole in relazione con le risposte e la richiesta di impegno rivolta al genitore e tentando di trovare un compromesso funzionale, permetterebbe al clinico di lavorare meglio col genitore, per renderlo consapevole dei compiti che gli sono richiesti e di tentare di creare un assetto in cui non vi sia un’unica figura responsabile ma una rete di altre figure significative che riescano a dare un supporto concreto. Bibliografia. Bonichini, S., Axia, G. (2000). La valutazione delle strategie di coping al dolore fisico nei bambini di età scolare. Psicologia clinica dello sviluppo, 4 (1): 97-123. Dewey, D., Crawford, S. (2007). Correlates of maternal and paternal adjustment to chronic childhood disease. Journal of Clinical Psychology in Medical Settings, 14(3), 219-226. Guarino, A., Di Blasio, P., D’Alessio, M., Camisasca, E., Serantoni, G. (2008). Richard R. Abidin: P.S.I. - Parenting Stress Index. Manuale. Firenze: Giunti O.S. Organizzazioni Speciali. Hung, J.W., Wu, Y. e Yeh, C. (2004). Comparing stress levels of parents of children with cancer and parents of children with physical disabilities. Psycho-Oncology, 13 (12), 898- 903. Sica, C., Novara, C., Dorz, S., & Sanavio, E. (1997). Coping Orientation to Problem Experienced (COPE) . Bollettino di Psicologia Applicata, 223, 25-34. Varni, J.W., Waldron, S.A., Gragg, R.A., Rapoff, M.A., Bernstein, B.H., Lindsley, C.B., Newcomb, M.D. (1996). Development of the Waldron/Varni pediatric pain coping inventory. Pain, 67: 141 – 150

Pain in Mucopolysaccharidoses: Analysis of the Problem and Possible Treatments

Mucopolysaccharidosis (MPS) are a group of lysosomal storage disorders that are caused by the deficiency of enzymes involving in the catabolism of glycosaminoglycan (GAGs). GAGs incompletely degraded accumulate in many sites, damaging tissues and cells, leading to a variety of clinical manifestations. Many of these manifestations are painful, but few data are available in the literature concerning the prevalence, etiology, and pathogenesis of pain in children with MPS. This review, through the analysis of the data available the in literature, underscores the relevant prevalence of pain in MPSs’ children, provides the instruments to discern the etiopathogenesis of the disease and of pain, illustrates the available molecules for the management of pain and the possible advantages of non-pharmacological pain therapy in MPSs’ patients

Defective Leukocyte β2 Integrin Expression and Reactive Oxygen Species Production in Neonates.

Neonates are highly susceptible to bacterial infections, which represent a major source of mortality and morbidity in this age category. It is recognized that β2 integrins play a critical role in innate immunity by mediating leukocyte vascular adhesion, transmigration and bacterial phagocytosis. Therefore, we aimed to assess if the impaired immune functions seen in newborns may derive, in part, from a transient insufficient β2 integrin expression. In the present study we measured baseline lymphocyte function-associated antigen-1 (LFA-1 or CD11a/CD18), macrophage-1 antigen (MAC-1 or CD11b/CD18) and leukocyte integrin p150-95 (CD11c/CD18) expression on cord blood, and on the third day of life in a cohort of 35 healthy neonates, compared with a control group of 12 healthy adults. For any of the three β2 integrins, the expression on polymorphonuclear cells was significantly lower on cord blood than in adults and increased from birth to day 3. We also compared superoxide radical (SR) production in these neonates with 28 non-smoking adults. SR production in response to integrin stimulation by Zymosan was significantly lower at birth than in adults, and it decreased further in the third day of life. These findings suggest that innate immune impairment in newborns may be, in part, accounted for by a lower β2 integrin expression on phagocytes in the neonatal period, but also by a functional impairment of free radical production

Abnormal γ-globin gene arrangements in Sardinians

An extended survey of 8,103 Sardinian newborns has been conducted for the study of abnormal γ-globin gene arrangements. Fetal hemoglobin analysis and globin gene mapping have identified five different arrangements in 24 babies: five (21%) were carriers of the –GAγ- hybrid (thalassemic) gene, directing the synthesis of the Aγ chain and resulting in low 641%) Gγ chain and decreased Hb F levels; two (8%) carried the –Aγ-Aγ-T- duplication, characterized by even lower (37%) Gγ levels; five (21%) carried the –Gγ-AGγ- Aγ- triplication; one (4%) carried the –Gγ-Gγ-Aγ- triplication, and 11 (46%) the –Gγ-Gγ- duplication, all resulting in high Gγ levels (85, 83, and 88%, respectively). Thirty-six additional babies could be phenotypically classified as carriers of the same mutations. Haplotyping and γ-chain composition showed that the crossover event generating the –GAγ- hybrid gene and the corresponding –Gγ-AGγ-Aγ- triplication has occurred on at least three different chromosomes. The –Gγ-Gγ- duplication was associated with the chromosome having haplotype I, and the –Aγ-Aγ-T- with the chromosome of haplotype II. As many as 2,260 babies (28%) were heterozygous, and 254 (3%) homozygous for the AγT mutation. The incidence and relative distribution of these anomalies in Sardinia are different when compared with those of other ethnic groups

Awareness, understanding and attitudes of Italians regarding palliative care

There are numerous difficulties encountered in the diffusion of palliative care (PC) in developed countries. A correct and widespread awareness of PC among the general public represents an important factor for its enhanced diffusion and use. The aim of this study is to verify the level of awareness of PC among Italians and their perception of the needs of patients with incurable illness. A random sample of 1897 adult subjects, aged 18 to 74 years, representative of the Italian population, was interviewed after stratification by gender, age (6 strata), education (3 levels), geographic area of residency (4 areas) and town of residency (4 dimensions). 59.4% of those interviewed had heard of PC, but only 23.5% of them believed that they had an adequate or precise idea of what PC is; 27% of them did not know or had a mistaken idea about the nature of PC. The most accepted perception was that PC alleviates pain and improves quality-of-life. The principal concerns attributed to incurable patients were: fear of suffering and of death, and the principal needs were perceived as: relief from pain and physical suffering. The primary needs of the family were identified in: medical and nursing care at home, followed by: care provided by volunteers and psychological support. The most appropriate care-setting for these patients was indicated as their home, possibly with the support of professional carers. In the case of children, the main concern indicated was that of being "separated" from family, friends, home and toys. Only 45.2% of interviewees thought that they knew a person who had experienced PC. In conclusion, the awareness of the Italian population of PC is scarce and often incorrect. In order to achieve a greater diffusion and better use of PC in our country, this awareness needs to be improved by appropriate intervention