Risultati per: Nota 13 AIFA - Guida pratica

Aiutando genitori si riduce rischio di nuovi accessi in ospedale

Il nome sarà presentato per l’intesa con le Regioni

Comunicato del 25/03/2024 n°20

Progetto Pascnet contro la nuova emergenza di sanità pubblica

Tre milioni di persone colpite, il 10% non controlla la malattia

Tre milioni di persone colpite, il 10% non controlla la malattia

Approvata rimborsabilità. A 4 anni è vivo il 25% dei pazienti

Approvata rimborsabilità. A 4 anni è vivo il 25% dei pazienti

Selumetinib riduce i neurofibromi legati alla neurofibromatosi

BackgroundPrimary ciliary dyskinesia (PCD) is a rare genetic ciliopathy characterised by recurrent respiratory infections, sinonasal disease, reduced hearing, infertility and situs inversus. It is a chronic condition with no curative therapy. The aim of this research was to understand the experiences of young people with PCD as they transition into adulthood and to adult healthcare services.MethodsAn interpretative phenomenological analytical method was applied. Semi-structured virtual interviews were conducted with three participants aged 18–24 years who were enrolled via PCD Support UK.ResultsFour interconnected group experiential themes were identified:The first theme was ‘Reconceptualising a stigmatised identity’. Participants demonstrated concealment of their condition and experienced both external and internalised stigmatisation. However, PCD was often reconceptualised as positive and contributory to their identities.The second theme was ‘Sharing the journey to independence’. Support was sought for and found in family, friends and others with shared experiences.The third theme was ‘Entering adulthood with newfound autonomy’. The transition to adulthood was marked by recognition of their own responsibility and the ability to make informed choices about their lives. They sought success in their chosen pathways and mitigated risks arising from their condition in realising these goals.The fourth theme was ‘Anticipating an uncertain future’. Participants shared a concerted yearning to succeed against a future that was entangled with uncertainty in view of their health.ConclusionTransition for young people with PCD is a complex and dynamic period marked by identity-formation, creating systems of support, and becoming an autonomous adult. They remained committed to their hopes and desires and refused to be ‘held back’. The improved understanding of these experiences can be applied to future practice that eases the process of transition, provides appropriate support, and identifies areas for further qualitative research.

Coinvolto cardiochirurgo del Sant’Orsola, ‘sfida è prevenzione’

Per l’assenza del presidente subentra il membro del Cda di nomina del ministro