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Abstract

Purpose: This study aimed to: (1) to assess the Quality of Life (QoL) of pediatric patients who had undergone Hematopoietic Stem Cell Transplantation (HSCT) and their parents; (2) to explore how patients and parents perceived a nurse counseling intervention; and (3) to explore how health professionals consider the nurse counselor's role.

Methods: This was a pilot descriptive study using quantitative and qualitative data.

Results: Parents' QoL was compromised in the domains of Social Functioning, Physical and Emotional roles. Patients' QoL was poor in all the domains except in Behavior and Family Cohesion. Patients and their parents considered the counseling as an effective help. Seven categories emerged from the analysis of qualitative data: support and taking charge, empathy, active communication and listening, evasion, sharing, awareness, and organizational availability. Regarding health professionals, five categories emerged from the analysis of the interviews and a focus group: support and taking charge, recovery in self-expression, support in relationship with patients and family, connecting role, and difficult integration within the team.

Conclusions: The nurse counselor could empower patients and parents to improve their attitudes towards care pathway. The nurse counselor can be an important resource in the context of HSCT, even if greater integration within the team is required.

Keywords: Bone marrow transplantation; Counseling; Quality of Life; Pediatric nursing.

 

Counseling per pazienti pediatrici sottoposti a trapianto di cellule staminali ematopoietiche e loro genitori: uno studio mixed methods

Obiettivi: Questo studio è stato condotto allo scopo di: (1) valutare la Qualití  di Vita (QdV) dei pazienti pediatrici che sono stati sottoposti a trapianto di cellule staminali ematopoietiche e dei loro genitori; (2) esplorare come i pazienti ed i loro genitori hanno vissuto un intervento infermieristico di counselling; e (3) esplorare come i professionisti sanitari considerano il ruolo dell'infermiere counselor.

Metodi: Questo è uno studio pilota a scopo descrittivo che utilizza dati qualitativi e quantitativi.

Risultati: La QdV dei genitori è risultata compromessa nei domini relativi al Funzionamento Sociale ed i ruoli Fisico ed Emotivo. La QdV dei pazienti è risultata scarsa in tutti i domini ad eccezione del Comportamento e della Coesione familiare. I pazienti ed i loro genitori hanno ritenuto che l'intervento di counseling fosse un aiuto concreto. Dall'analisi dei dati qualitativi sono emerse sette categorie: supporto e presa in carico, empatia, comunicazione e ascolto attivo, evasione, condivisione, consapevolezza, e disponibilití  organizzativa. Per quanto riguarda i professionisti sanitari, sono emerse cinque categorie dall'analisi delle interviste e del focus group: supporto e presa in carico, guarigione attraverso l'espressione del sé, supporto nella relazione con i pazienti e la famiglia, ruolo di connessione ed integrazione difficile nell'equipe.

Conclusioni: L'infermiere counselor potrebbe consentire a pazienti e genitori di migliorare il loro atteggiamento nei confronti del percorso assistenziale. L'infermiere counselor può essere una importante risorsa nel contesto trapiantologico. È necessaria una maggiore integrazione di questa figura all'interno dell'equipe.

Keywords: Counseling; Infermieristica pediatrica; Qualití  di vita; Trapianto di cellule staminali ematopoietiche.

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Tiozzo, E., Marchetti, A., Nicolai, I., Fosco, C., Dall’oglio, I., Gawronski, O., Guerrieri, S., Spagnul, C., Rubei, D., Ciaralli, I., & Raponi, M. (2019). Counseling for pediatric patients undergoing hematopoietic stem cell transplantation and their parents: A pilot descriptive study. PROFESSIONI INFERMIERISTICHE, 72(3). Recuperato da https://www.profinf.net/pro3/index.php/IN/article/view/666
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