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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Special Edition #2 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2021-QHRN.27</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care
Creator
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Postavaru GI; Swaby H; Swaby R
Description
An account of the resource
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predominant mother narrative, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods Meta-ethnography was used to synthesise existing qualitative studies exploring fathers' caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results Sixty-three studies were included. A conceptual model of fathers' key experiences was developed. It encompassed the following overarching concepts: 'The paradox of support'; 'Challenges in the caring process'; 'Nobody thinks of men'; 'Impact on family life' and; 'The fall of the curtain: an irrevocably altered world'. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment described fathers' experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers' experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers' confidence in the caregiving process will be explored. Conclusions This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-QHRN.27</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 2 - Parent Perspectives
Bmj Open
Caregiver Attitudes
Ethical Issue
fathers perspectives
Life-limiting Condition
Pediatric Palliative Care
Postavaru GI
Swaby H
Swaby R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjopen-2021-QHRN.27</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Publisher
An entity responsible for making the resource available
BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Postavaru GI; Swaby H; Swaby R
Description
An account of the resource
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predominant mother narrative, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods Meta-ethnography was used to synthesise existing qualitative studies exploring fathers' caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results Sixty-three studies were included. A conceptual model of fathers' key experiences was developed. It encompassed the following overarching concepts: 'The paradox of support'; 'Challenges in the caring process'; 'Nobody thinks of men'; 'Impact on family life' and; 'The fall of the curtain: an irrevocably altered world'. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment described fathers' experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers' experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers' confidence in the caregiving process will be explored. Conclusions This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-QHRN.27</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Bmj Open
Caregiver Attitudes
Ethical Issue
fathers perspectives
July 2021 List
Life-limiting Condition
Pediatric Palliative Care
Postavaru GI
Swaby H
Swaby R
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Lethal Fetal Abnormalities: How To Approach Perinatal Palliative Care?
Publisher
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Journal Of Maternal, Fetal And Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Obstetrics & Gynecology; Anomalies; Prenatal-diagnosis; Malformations; Pregnancy; Professionals
Ethical Issue; Fetal Abnormality; Information; Palliative Care; Perinatal Medicine
Creator
An entity primarily responsible for making the resource
Tosello B; Haddad G; Gire C; Einaudi MA
Description
An account of the resource
OBJECTIVE:
Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case.
METHODS:
We sent by emails a questionnaire to 434 maternal-fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis.
RESULTS:
The participation rate was 49.3%. In total, 61 obstetric-gynecologists and 68 neonatologists completed the survey. The results showed that 35.4% of the pregnant women asked for the continuation of pregnancy and 24.7% asked for the termination of pregnancy. More than half of professionals (52.9%) took the initiative of informing women about the options for birth support (including PPC), while 32.7% of obstetric gynecologists did not take this initiative versus 10.2% of neonatologists (p < 0.01).
CONCLUSION:
This study demonstrates the absolute need to provide PPC training for professionals and to standardize its practices.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Anomalies
Einaudi MA
Ethical Issue
Fetal Abnormality
Gire C
Haddad G
Information
Journal of Maternal, Fetal and Neonatal Medicine
Malformations
May 2016 List
Obstetrics & Gynecology
Palliative Care
Perinatal Medicine
Pregnancy
Prenatal-diagnosis
Professionals
Tosello B