Living with a Crucial Decision: A Qualitative Study of Parental Narratives Three Years after the Loss of Their Newborn in the NICU
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{"title"=>"Living with a crucial decision: A qualitative study of parental narratives three years after the loss of their newborn in the NICU", "type"=>"journal", "authors"=>[{"first_name"=>"Laurence", "last_name"=>"Caeymaex", "scopus_author_id"=>"21933296800"}, {"first_name"=>"Mario", "last_name"=>"Speranza", "scopus_author_id"=>"56228919000"}, {"first_name"=>"Caroline", "last_name"=>"Vasilescu", "scopus_author_id"=>"54685482700"}, {"first_name"=>"Claude", "last_name"=>"Danan", "scopus_author_id"=>"55941138600"}, {"first_name"=>"Marie Michèle", "last_name"=>"Bourrat", "scopus_author_id"=>"6701915714"}, {"first_name"=>"Micheline", "last_name"=>"Garel", "scopus_author_id"=>"35609085000"}, {"first_name"=>"Catherine", "last_name"=>"Jousselme", "scopus_author_id"=>"23392599000"}], "year"=>2011, "source"=>"PLoS ONE", "identifiers"=>{"issn"=>"19326203", "scopus"=>"2-s2.0-83455212033", "pui"=>"363077004", "doi"=>"10.1371/journal.pone.0028633", "isbn"=>"1932-6203", "sgr"=>"83455212033", "pmid"=>"22194873"}, "id"=>"5f0ca77d-6fcb-31db-a3f4-ce556e44eee9", "abstract"=>"BACKGROUND: The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU.\\n\\nMETHODS: The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP.\\n\\nFINDINGS: Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child.\\n\\nINTERPRETATION: Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices.", "link"=>"http://www.mendeley.com/research/living-crucial-decision-qualitative-study-parental-narratives-three-years-after-loss-newborn-nicu", "reader_count"=>69, "reader_count_by_academic_status"=>{"Unspecified"=>3, "Professor > Associate Professor"=>3, "Librarian"=>3, "Student > Doctoral Student"=>3, "Researcher"=>12, "Student > Ph. D. Student"=>11, "Student > Postgraduate"=>2, "Student > Master"=>10, "Other"=>10, "Student > Bachelor"=>7, "Lecturer > Senior Lecturer"=>2, "Professor"=>3}, "reader_count_by_user_role"=>{"Unspecified"=>3, "Professor > Associate Professor"=>3, "Librarian"=>3, "Student > Doctoral Student"=>3, "Researcher"=>12, "Student > Ph. D. Student"=>11, "Student > Postgraduate"=>2, "Student > Master"=>10, "Other"=>10, "Student > Bachelor"=>7, "Lecturer > Senior Lecturer"=>2, "Professor"=>3}, "reader_count_by_subject_area"=>{"Unspecified"=>5, "Nursing and Health Professions"=>13, "Biochemistry, Genetics and Molecular Biology"=>1, "Medicine and Dentistry"=>33, "Agricultural and Biological Sciences"=>1, "Arts and Humanities"=>1, "Psychology"=>3, "Social Sciences"=>11, "Linguistics"=>1}, "reader_count_by_subdiscipline"=>{"Medicine and Dentistry"=>{"Medicine and Dentistry"=>33}, "Social Sciences"=>{"Social Sciences"=>11}, "Psychology"=>{"Psychology"=>3}, "Agricultural and Biological Sciences"=>{"Agricultural and Biological Sciences"=>1}, "Nursing and Health Professions"=>{"Nursing and Health Professions"=>13}, "Linguistics"=>{"Linguistics"=>1}, "Biochemistry, Genetics and Molecular Biology"=>{"Biochemistry, Genetics and Molecular Biology"=>1}, "Unspecified"=>{"Unspecified"=>5}, "Arts and Humanities"=>{"Arts and Humanities"=>1}}, "reader_count_by_country"=>{"Saudi Arabia"=>1, "United States"=>3, "Norway"=>1, "United Kingdom"=>1}, "group_count"=>6}

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Figshare

  • {"files"=>["https://ndownloader.figshare.com/files/702173"], "description"=>"<p>Analysis limited to face-to-face interviews.</p>", "links"=>[], "tags"=>["making", "qualitative"], "article_id"=>372544, "categories"=>["Neuroscience", "Medicine", "Mental Health"], "users"=>["Laurence Caeymaex", "Mario Speranza", "Caroline Vasilescu", "Claude Danan", "Marie-Michèle Bourrat", "Micheline Garel", "Catherine Jousselme"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0028633.t002", "stats"=>{"downloads"=>1, "page_views"=>10, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Typology_of_perceived_decision_making_based_on_the_qualitative_assessment_/372544", "title"=>"Typology of perceived decision making based on the qualitative assessment.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2011-12-14 00:42:24"}
  • {"files"=>["https://ndownloader.figshare.com/files/702211"], "description"=>"<p>Positive and negative feelings related to the perceived role in the EOL-DM.</p>", "links"=>[], "tags"=>["feelings"], "article_id"=>372590, "categories"=>["Neuroscience", "Medicine", "Mental Health"], "users"=>["Laurence Caeymaex", "Mario Speranza", "Caroline Vasilescu", "Claude Danan", "Marie-Michèle Bourrat", "Micheline Garel", "Catherine Jousselme"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0028633.t003", "stats"=>{"downloads"=>2, "page_views"=>9, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Positive_and_negative_feelings_related_to_the_perceived_role_in_the_EOL_DM_/372590", "title"=>"Positive and negative feelings related to the perceived role in the EOL-DM.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2011-12-14 00:43:10"}
  • {"files"=>["https://ndownloader.figshare.com/files/356863", "https://ndownloader.figshare.com/files/356917"], "description"=>"<div><h3>Background</h3><p>The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU.</p> <h3>Methods</h3><p>The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP.</p> <h3>Findings</h3><p>Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child.</p> <h3>Interpretation</h3><p>Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices.</p> </div>", "links"=>[], "tags"=>["qualitative", "narratives", "years", "newborn", "nicu"], "article_id"=>130524, "categories"=>["Neuroscience", "Medicine", "Mental Health"], "users"=>["Laurence Caeymaex", "Mario Speranza", "Caroline Vasilescu", "Claude Danan", "Marie-Michèle Bourrat", "Micheline Garel", "Catherine Jousselme"], "doi"=>["https://dx.doi.org/10.1371/journal.pone.0028633.s001", "https://dx.doi.org/10.1371/journal.pone.0028633.s002"], "stats"=>{"downloads"=>5, "page_views"=>3, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/Living_with_a_Crucial_Decision_A_Qualitative_Study_of_Parental_Narratives_Three_Years_after_the_Loss_of_Their_Newborn_in_the_NICU/130524", "title"=>"Living with a Crucial Decision: A Qualitative Study of Parental Narratives Three Years after the Loss of Their Newborn in the NICU", "pos_in_sequence"=>0, "defined_type"=>4, "published_date"=>"2011-12-14 00:08:44"}
  • {"files"=>["https://ndownloader.figshare.com/files/702242"], "description"=>"<p>ICH: intracranial hemorrhage; NEC: necrotizing enterocolitis; cWMD: cystic white matter disease; IC: intensive care.</p><p>*Patients were classified according to their clinical status at the time of the EOL DM: those who had no chance to survive despite Intensive care (IC); those who had a theoretical chance to survive with IC but had a very poor prognosis; and those who were not dependent on IC but had a hopeless prognosis and severe suffering (Verhagen, 2007).</p>", "links"=>[], "tags"=>["characteristics", "parents", "children"], "article_id"=>372618, "categories"=>["Neuroscience", "Medicine", "Mental Health"], "users"=>["Laurence Caeymaex", "Mario Speranza", "Caroline Vasilescu", "Claude Danan", "Marie-Michèle Bourrat", "Micheline Garel", "Catherine Jousselme"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0028633.t001", "stats"=>{"downloads"=>0, "page_views"=>5, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Description_of_the_social_and_demographic_characteristics_of_the_respondent_parents_N_8202_8202_164_and_their_children_N_8202_8202_139_/372618", "title"=>"Description of the social and demographic characteristics of the respondent parents (N = 164) and their children (N = 139).", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2011-12-14 00:43:38"}

PMC Usage Stats | Further Information

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Relative Metric

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