Challenges and worries in life stories of women with bleeding disorders

Titolo Rivista PSICOLOGIA DELLA SALUTE
Autori/Curatori Sonia Brondi, Francesca Emiliani, Lydia Piscitelli, Lelia Valdré
Anno di pubblicazione 2023 Fascicolo 2023/2
Lingua Inglese Numero pagine 17 P. 118-134 Dimensione file 306 KB
DOI 10.3280/PDS2023-002008
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Women with bleeding disorders have rarely been studied. Recently, thanks to the advancement in treatment options and the recognition that women can also suffer from haemo-philia, new research lines have been developed. This study investigated the experiences of women affected by bleeding disorders (patients, healthy or symptomatic carriers), specifically focussing on disease diagnosis and management in daily life, relational issues, and reproductive options. Age, family history, educational qualification and religiosity were also considered. Thirty-two women were interviewed, and their narratives were analysed with lexical-metric and qualitative content analysis. The results showed some key themes, which refer to cognitive, affective and behavioural responses to the disease. They included both sex-neutral and female-specific contents, offering a new reading of the phenomenon. Although the aware-ness of female bleeding disorders has increased in recent years, sick women stressed late di-agnosis paths and symptom underestimations, while female carriers discussed psychosexual issues and motherhood choices, with related implications on physical and psychological well-being, and relational life. Alongside commonalities, some differences emerged depending on women’s socio-cultural situations. Overall, they suggested the importance of developing early patient-centred psycho-educational paths in order to tailor interventions to specific women’s needs, promote disease and self-acceptance, and enhance effective management.

Le donne affette da malattie emorragiche sono state raramente oggetto di studio. Recentemente, grazie all’avanzamento in ambito farmacologico e all’acquisizione che anche le donne possono essere affette da emofilia, si sono sviluppate nuove linee di ricerca. Questo studio ha indagato le esperienze di donne affette da malattie emorragiche (malate, portatrici sane o sinto-matiche), con particolare interesse per il percorso diagnostico, la gestione della malattia nel quotidiano, le questioni relazionali e le scelte riproduttive. Sono state considerate anche età, storia familiare, livello di istruzione e pratica religiosa. Trentadue donne sono state intervistate e le loro narrazioni sono state esaminate tramite un’analisi del contenuto lessico-metrica e qualitativa. I risultati hanno mostrato alcuni temi principali, che fanno riferimento a risposte cognitive, affettive e comportamenti alla malattia. Esse hanno incluso sia contenuti trasversali a en-trambi i sessi biologici sia specifici del femminile, offrendo una nuova lettura del fenomeno. Nonostante la consapevolezza della versione femminile delle malattie emorragiche sia aumenta-ta negli anni recenti, le donne malate hanno sottolineato percorsi diagnostici tardivi e svaluta-zione dei sintomi, mentre le donne portatrici hanno discusso questioni legate alla sfera psico-sessuale e alle scelte di maternità, con relative implicazioni sul benessere fisico e psicologico, oltre che sulla vita relazionale. Accanto agli elementi comuni, alcune differenze sono emerse rispetto alle situazioni socio-culturali delle donne. In generale, esse hanno suggerito l’importanza di sviluppare percorsi psicoeducativi incentrati sul paziente al fine di adattare gli interventi sugli specifici bisogni delle donne, promuovere l’accettazione di se stesse e della malattia, e favorire una gestione efficace.

Keywords:donne, malattie emorragiche, accettazione, benessere, bisogni psicoeducativi, interviste.

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Sonia Brondi, Francesca Emiliani, Lydia Piscitelli, Lelia Valdré, Challenges and worries in life stories of women with bleeding disorders in "PSICOLOGIA DELLA SALUTE" 2/2023, pp 118-134, DOI: 10.3280/PDS2023-002008