Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol
Introduction Necrotising enterocolitis is a devastating gastrointestinal disease predominantly affecting preterm infants. In 40% of cases, its rapid progression renders conservative treatment insufficient, necessitating laparotomy as the sole viable option for survival. However, high perioperative a...
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BMJ Publishing Group
2024-12-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/14/12/e087939.full |
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| author | Rosa Geurtzen Jan B F Hulscher Elisabeth M W Kooi Nanon H M Labrie A A Eduard Verhagen Sylvia A Obermann-Borst Rosa Verhoeven |
| author_facet | Rosa Geurtzen Jan B F Hulscher Elisabeth M W Kooi Nanon H M Labrie A A Eduard Verhagen Sylvia A Obermann-Borst Rosa Verhoeven |
| author_sort | Rosa Geurtzen |
| collection | DOAJ |
| description | Introduction Necrotising enterocolitis is a devastating gastrointestinal disease predominantly affecting preterm infants. In 40% of cases, its rapid progression renders conservative treatment insufficient, necessitating laparotomy as the sole viable option for survival. However, high perioperative and postoperative mortality rates, along with severe future potential disabilities and suffering, can complicate the decision of whether surgery is still in the infant’s best interest. In such cases, palliative care, aimed to minimise suffering, may be considered as an alternative to laparotomy, especially when the infant’s expected quality of life and overall prognosis are concerning. Depending on the sociocultural context, parents are increasingly involved in this decision. However, weighing the risks, benefits and uncertainties can be challenging for them. Therefore, we aim to develop a decision support tool using a novel combination of the Delphi technique and Q-methodology. Ultimately, we anticipate that this approach will contribute to improved family-centred care and optimised outcomes.Methods and analysis The first phase of the study aims to identify key factors guiding Dutch parents’ decisions between laparotomy and palliative care (decision factors). Using a Delphi process, parents with varying perspectives and experiences will evaluate decision factors found in the literature and those self-suggested. The pertinent set of decision factors is defined during a consensus meeting.During the second phase, parents are asked to compare statements about these decision factors using Q-methodology. A by-person factor analysis of these comparisons will identify different parental decision-making profiles, which allows for formulating advice tailored to those profiles.Ultimately, we will build an online decision support tool which facilitates the classification of parent perspectives. The tool will then provide the parents with the relevant advice. In the last phase of the study, the tool’s effectiveness will be evaluated through an online questionnaire, asking parents to imagine using the tool in a real-world scenario.Ethics and dissemination Ethical approval has been obtained from Central Ethics Review Committee of The University Medical Center Groningen (METc 2023/577, CTc UMCG 153660). Participants will be asked to provide their informed consent for the parts of the study that involve non-anonymous data gathering. Findings will be disseminated through academic journals and conferences. Options for long-term data preservation are under consideration. |
| format | Article |
| id | doaj-art-179d99540bad46d8bafd263752b05cfe |
| institution | OA Journals |
| issn | 2044-6055 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | BMJ Publishing Group |
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| series | BMJ Open |
| spelling | doaj-art-179d99540bad46d8bafd263752b05cfe2025-08-20T01:57:54ZengBMJ Publishing GroupBMJ Open2044-60552024-12-01141210.1136/bmjopen-2024-087939Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocolRosa Geurtzen0Jan B F Hulscher1Elisabeth M W Kooi2Nanon H M Labrie3A A Eduard Verhagen4Sylvia A Obermann-Borst5Rosa Verhoeven64 Amalia Children`s Hospital, Department of Neonatology, Radboud University Medical Centre, Nijmegen, The Netherlands1 Department of Surgery, Division of Paediatric Surgery, University Medical Centre Groningen, Groningen, The Netherlands2 Department of Neonatology, Beatrix Children`s Hospital, University Medical Centre Groningen, Groningen, The Netherlands5 Department of Language, Literature & Communication, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands7 Department of Paediatrics, Beatrix Children`s Hospital, University Medical Centre Groningen, Groningen, The Netherlands3 Care4Neo, Neonatal Patient and Parent Advocacy Organization, Rotterdam, The Netherlands1 Department of Surgery, Division of Paediatric Surgery, University Medical Centre Groningen, Groningen, The NetherlandsIntroduction Necrotising enterocolitis is a devastating gastrointestinal disease predominantly affecting preterm infants. In 40% of cases, its rapid progression renders conservative treatment insufficient, necessitating laparotomy as the sole viable option for survival. However, high perioperative and postoperative mortality rates, along with severe future potential disabilities and suffering, can complicate the decision of whether surgery is still in the infant’s best interest. In such cases, palliative care, aimed to minimise suffering, may be considered as an alternative to laparotomy, especially when the infant’s expected quality of life and overall prognosis are concerning. Depending on the sociocultural context, parents are increasingly involved in this decision. However, weighing the risks, benefits and uncertainties can be challenging for them. Therefore, we aim to develop a decision support tool using a novel combination of the Delphi technique and Q-methodology. Ultimately, we anticipate that this approach will contribute to improved family-centred care and optimised outcomes.Methods and analysis The first phase of the study aims to identify key factors guiding Dutch parents’ decisions between laparotomy and palliative care (decision factors). Using a Delphi process, parents with varying perspectives and experiences will evaluate decision factors found in the literature and those self-suggested. The pertinent set of decision factors is defined during a consensus meeting.During the second phase, parents are asked to compare statements about these decision factors using Q-methodology. A by-person factor analysis of these comparisons will identify different parental decision-making profiles, which allows for formulating advice tailored to those profiles.Ultimately, we will build an online decision support tool which facilitates the classification of parent perspectives. The tool will then provide the parents with the relevant advice. In the last phase of the study, the tool’s effectiveness will be evaluated through an online questionnaire, asking parents to imagine using the tool in a real-world scenario.Ethics and dissemination Ethical approval has been obtained from Central Ethics Review Committee of The University Medical Center Groningen (METc 2023/577, CTc UMCG 153660). Participants will be asked to provide their informed consent for the parts of the study that involve non-anonymous data gathering. Findings will be disseminated through academic journals and conferences. Options for long-term data preservation are under consideration.https://bmjopen.bmj.com/content/14/12/e087939.full |
| spellingShingle | Rosa Geurtzen Jan B F Hulscher Elisabeth M W Kooi Nanon H M Labrie A A Eduard Verhagen Sylvia A Obermann-Borst Rosa Verhoeven Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol BMJ Open |
| title | Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol |
| title_full | Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol |
| title_fullStr | Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol |
| title_full_unstemmed | Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol |
| title_short | Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol |
| title_sort | development of a parent decision support tool for surgical necrotising enterocolitis a study protocol |
| url | https://bmjopen.bmj.com/content/14/12/e087939.full |
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