Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. Ausführliche Beschreibung

Gespeichert in:

Autor*in:	Michele Sacco [verfasserIn] Irene Rutigliano [verfasserIn] Letizia Ragusa [verfasserIn] Antonio Crinò [verfasserIn] Graziano Grugni [verfasserIn] Luigi Reale [verfasserIn] Alessandra Fiorencis [verfasserIn] Maria Rosaria Licenziati [verfasserIn] Maria Felicia Faienza [verfasserIn] Malgorzata Wasniewska [verfasserIn] Maurizio Delvecchio [verfasserIn] Adriana Franzese [verfasserIn] Paola Fusilli [verfasserIn] Domenico Corica [verfasserIn] Giuseppina Campana [verfasserIn] Donatella Greco [verfasserIn] Mariangela Chiarito [verfasserIn] Silvia Toscano [verfasserIn] Maria Giulia Marini [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2020

Übergeordnetes Werk:	In: BMJ Open - BMJ Publishing Group, 2011, 10(2020), 8
Übergeordnetes Werk:	volume:10 ; year:2020 ; number:8

Links:	Link aufrufen Link aufrufen Link aufrufen Journal toc

DOI / URN:	10.1136/bmjopen-2019-036502

Katalog-ID:	DOAJ057842515

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allfields	10.1136/bmjopen-2019-036502 doi (DE-627)DOAJ057842515 (DE-599)DOAJ7c26c7830af941a9bd3971e1d67afdaa DE-627 ger DE-627 rakwb eng Michele Sacco verfasserin aut Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research 2020 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. Medicine R Irene Rutigliano verfasserin aut Letizia Ragusa verfasserin aut Antonio Crinò verfasserin aut Graziano Grugni verfasserin aut Luigi Reale verfasserin aut Alessandra Fiorencis verfasserin aut Maria Rosaria Licenziati verfasserin aut Maria Felicia Faienza verfasserin aut Malgorzata Wasniewska verfasserin aut Maurizio Delvecchio verfasserin aut Adriana Franzese verfasserin aut Paola Fusilli verfasserin aut Domenico Corica verfasserin aut Giuseppina Campana verfasserin aut Donatella Greco verfasserin aut Mariangela Chiarito verfasserin aut Silvia Toscano verfasserin aut Maria Giulia Marini verfasserin aut In BMJ Open BMJ Publishing Group, 2011 10(2020), 8 (DE-627)654747075 (DE-600)2599832-8 20446055 nnns volume:10 year:2020 number:8 https://doi.org/10.1136/bmjopen-2019-036502 kostenfrei https://doaj.org/article/7c26c7830af941a9bd3971e1d67afdaa kostenfrei https://bmjopen.bmj.com/content/10/8/e036502.full kostenfrei https://doaj.org/toc/2044-6055 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_375 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2020 8
spelling	10.1136/bmjopen-2019-036502 doi (DE-627)DOAJ057842515 (DE-599)DOAJ7c26c7830af941a9bd3971e1d67afdaa DE-627 ger DE-627 rakwb eng Michele Sacco verfasserin aut Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research 2020 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. Medicine R Irene Rutigliano verfasserin aut Letizia Ragusa verfasserin aut Antonio Crinò verfasserin aut Graziano Grugni verfasserin aut Luigi Reale verfasserin aut Alessandra Fiorencis verfasserin aut Maria Rosaria Licenziati verfasserin aut Maria Felicia Faienza verfasserin aut Malgorzata Wasniewska verfasserin aut Maurizio Delvecchio verfasserin aut Adriana Franzese verfasserin aut Paola Fusilli verfasserin aut Domenico Corica verfasserin aut Giuseppina Campana verfasserin aut Donatella Greco verfasserin aut Mariangela Chiarito verfasserin aut Silvia Toscano verfasserin aut Maria Giulia Marini verfasserin aut In BMJ Open BMJ Publishing Group, 2011 10(2020), 8 (DE-627)654747075 (DE-600)2599832-8 20446055 nnns volume:10 year:2020 number:8 https://doi.org/10.1136/bmjopen-2019-036502 kostenfrei https://doaj.org/article/7c26c7830af941a9bd3971e1d67afdaa kostenfrei https://bmjopen.bmj.com/content/10/8/e036502.full kostenfrei https://doaj.org/toc/2044-6055 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_375 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2020 8
allfields_unstemmed	10.1136/bmjopen-2019-036502 doi (DE-627)DOAJ057842515 (DE-599)DOAJ7c26c7830af941a9bd3971e1d67afdaa DE-627 ger DE-627 rakwb eng Michele Sacco verfasserin aut Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research 2020 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. Medicine R Irene Rutigliano verfasserin aut Letizia Ragusa verfasserin aut Antonio Crinò verfasserin aut Graziano Grugni verfasserin aut Luigi Reale verfasserin aut Alessandra Fiorencis verfasserin aut Maria Rosaria Licenziati verfasserin aut Maria Felicia Faienza verfasserin aut Malgorzata Wasniewska verfasserin aut Maurizio Delvecchio verfasserin aut Adriana Franzese verfasserin aut Paola Fusilli verfasserin aut Domenico Corica verfasserin aut Giuseppina Campana verfasserin aut Donatella Greco verfasserin aut Mariangela Chiarito verfasserin aut Silvia Toscano verfasserin aut Maria Giulia Marini verfasserin aut In BMJ Open BMJ Publishing Group, 2011 10(2020), 8 (DE-627)654747075 (DE-600)2599832-8 20446055 nnns volume:10 year:2020 number:8 https://doi.org/10.1136/bmjopen-2019-036502 kostenfrei https://doaj.org/article/7c26c7830af941a9bd3971e1d67afdaa kostenfrei https://bmjopen.bmj.com/content/10/8/e036502.full kostenfrei https://doaj.org/toc/2044-6055 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_375 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2020 8
allfieldsGer	10.1136/bmjopen-2019-036502 doi (DE-627)DOAJ057842515 (DE-599)DOAJ7c26c7830af941a9bd3971e1d67afdaa DE-627 ger DE-627 rakwb eng Michele Sacco verfasserin aut Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research 2020 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. Medicine R Irene Rutigliano verfasserin aut Letizia Ragusa verfasserin aut Antonio Crinò verfasserin aut Graziano Grugni verfasserin aut Luigi Reale verfasserin aut Alessandra Fiorencis verfasserin aut Maria Rosaria Licenziati verfasserin aut Maria Felicia Faienza verfasserin aut Malgorzata Wasniewska verfasserin aut Maurizio Delvecchio verfasserin aut Adriana Franzese verfasserin aut Paola Fusilli verfasserin aut Domenico Corica verfasserin aut Giuseppina Campana verfasserin aut Donatella Greco verfasserin aut Mariangela Chiarito verfasserin aut Silvia Toscano verfasserin aut Maria Giulia Marini verfasserin aut In BMJ Open BMJ Publishing Group, 2011 10(2020), 8 (DE-627)654747075 (DE-600)2599832-8 20446055 nnns volume:10 year:2020 number:8 https://doi.org/10.1136/bmjopen-2019-036502 kostenfrei https://doaj.org/article/7c26c7830af941a9bd3971e1d67afdaa kostenfrei https://bmjopen.bmj.com/content/10/8/e036502.full kostenfrei https://doaj.org/toc/2044-6055 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_375 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2020 8
allfieldsSound	10.1136/bmjopen-2019-036502 doi (DE-627)DOAJ057842515 (DE-599)DOAJ7c26c7830af941a9bd3971e1d67afdaa DE-627 ger DE-627 rakwb eng Michele Sacco verfasserin aut Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research 2020 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. Medicine R Irene Rutigliano verfasserin aut Letizia Ragusa verfasserin aut Antonio Crinò verfasserin aut Graziano Grugni verfasserin aut Luigi Reale verfasserin aut Alessandra Fiorencis verfasserin aut Maria Rosaria Licenziati verfasserin aut Maria Felicia Faienza verfasserin aut Malgorzata Wasniewska verfasserin aut Maurizio Delvecchio verfasserin aut Adriana Franzese verfasserin aut Paola Fusilli verfasserin aut Domenico Corica verfasserin aut Giuseppina Campana verfasserin aut Donatella Greco verfasserin aut Mariangela Chiarito verfasserin aut Silvia Toscano verfasserin aut Maria Giulia Marini verfasserin aut In BMJ Open BMJ Publishing Group, 2011 10(2020), 8 (DE-627)654747075 (DE-600)2599832-8 20446055 nnns volume:10 year:2020 number:8 https://doi.org/10.1136/bmjopen-2019-036502 kostenfrei https://doaj.org/article/7c26c7830af941a9bd3971e1d67afdaa kostenfrei https://bmjopen.bmj.com/content/10/8/e036502.full kostenfrei https://doaj.org/toc/2044-6055 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_375 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2020 8
language	English
source	In BMJ Open 10(2020), 8 volume:10 year:2020 number:8
sourceStr	In BMJ Open 10(2020), 8 volume:10 year:2020 number:8
format_phy_str_mv	Article
institution	findex.gbv.de
topic_facet	Medicine R
isfreeaccess_bool	true
container_title	BMJ Open
authorswithroles_txt_mv	Michele Sacco @@aut@@ Irene Rutigliano @@aut@@ Letizia Ragusa @@aut@@ Antonio Crinò @@aut@@ Graziano Grugni @@aut@@ Luigi Reale @@aut@@ Alessandra Fiorencis @@aut@@ Maria Rosaria Licenziati @@aut@@ Maria Felicia Faienza @@aut@@ Malgorzata Wasniewska @@aut@@ Maurizio Delvecchio @@aut@@ Adriana Franzese @@aut@@ Paola Fusilli @@aut@@ Domenico Corica @@aut@@ Giuseppina Campana @@aut@@ Donatella Greco @@aut@@ Mariangela Chiarito @@aut@@ Silvia Toscano @@aut@@ Maria Giulia Marini @@aut@@
publishDateDaySort_date	2020-01-01T00:00:00Z
hierarchy_top_id	654747075
id	DOAJ057842515
language_de	englisch
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The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. 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author	Michele Sacco
spellingShingle	Michele Sacco misc Medicine misc R Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
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topic_title	Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
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title	Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
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title_full	Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
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author_browse	Michele Sacco Irene Rutigliano Letizia Ragusa Antonio Crinò Graziano Grugni Luigi Reale Alessandra Fiorencis Maria Rosaria Licenziati Maria Felicia Faienza Malgorzata Wasniewska Maurizio Delvecchio Adriana Franzese Paola Fusilli Domenico Corica Giuseppina Campana Donatella Greco Mariangela Chiarito Silvia Toscano Maria Giulia Marini
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title_sort	caring and living with prader-willi syndrome in italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
title_auth	Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
abstract	Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.
abstractGer	Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.
abstract_unstemmed	Objectives Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and setting The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.Participants Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.
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title_short	Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research
url	https://doi.org/10.1136/bmjopen-2019-036502 https://doaj.org/article/7c26c7830af941a9bd3971e1d67afdaa https://bmjopen.bmj.com/content/10/8/e036502.full https://doaj.org/toc/2044-6055
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A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.Results The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.Conclusion The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. 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Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

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