Parents Reactions to Multi-Disciplinary Perinatal Palliative Care During Pregnancy With a Lethal Fetal Diagnosis

2.50
Hdl Handle:
http://hdl.handle.net/10755/335036
Category:
Full-text
Type:
Presentation
Title:
Parents Reactions to Multi-Disciplinary Perinatal Palliative Care During Pregnancy With a Lethal Fetal Diagnosis
Other Titles:
Traumatic Issues in the Pediatric Population
Author(s):
Cote-Arsenault, Denise
Lead Author STTI Affiliation:
Non-member
Author Details:
Denise Cote-Arsenault, PhD, RN, d_cotear@uncg.edu
Abstract:
Session presented on Monday, July 28, 2014: Purpose: Some parents learn through prenatal testing that their wished-for child has abnormalities that are incompatible with life. Their fetal diagnoses launch them into appointments with sonographers, obstetricians, genetic counselors, perinatologists, maternal-fetal medicine specialists, bereavement nurses, perinatal palliative care programs, hospice, and neonatologists. The purpose of this presentation is to describe parents' reactions to interactions with care providers from multi-disciplines during such pregnancies and to make recommendations of useful interaction styles to care providers. Methods: Naturalistic, longitudinal. Inclusion criteria: currently pregnant mothers and their willing partners who intend to continue their pregnancy, are 18 years of age or older, speak English and do not have a multiple gestation. Recruitment was done through care providers who obtained permission to contact for us. The goal was to have two interviews with both parents during pregnancy and two more after the birth/death of the baby. The PI conducted all of the interviews either in-person, on the phone, or via video-conference; all interviews were recorded, professionally transcribed, and transcripts were carefully verified. Field notes were included in the transcripts, then entered into Atlas.ti for data management. Analysis was an iterative process that began at the interview, then moved to transcript texts; done independently and then with the research team. Memos were written, categories and themes were identified; exemplar quotes were extracted. Results: 16 mothers and 14 partners were interviewed; most were interviewed 3 times over 6 months. Interviews lasted 1-2 hours. Parents were interviewed together and separately, to gain their unique views. Parents found that compassionate, straight forward, and non-judgmental care providers were very helpful. Unhelpful approaches included silence, withholding information, absent of hope, making assumptions, not asking about personal preference, and only focusing on the baby's abnormalities. Interactions with care providers that were helpful led to parental understanding of their baby's condition, assisted them with birth planning, supported their grief, and facilitated their relationship with their baby, and their personal growth. Unhelpful interactions caused emotional distress, anger, frustration, and increased grief. Care coordination across disciplines was seen as very helpful, supportive, and caring. Using quotes from both parents, recommendations for care providers and perinatal palliative care will be presented. Conclusion: Parents' journey drastically changes course after learning their fetal diagnosis. Interactions with multiple care providers can be stressful or helpful. Coordination of care could reduce the stress and provide helpful support for parents. Given the painful situation parents are in, the best possible care should be given that honors the baby and facilitates healthy grieving of the parents.
Keywords:
interprofessional care; perinatal palliative care; naturalistic research
Repository Posting Date:
17-Nov-2014
Date of Publication:
17-Nov-2014 ; 17-Nov-2014
Other Identifiers:
INRC14M05
Conference Date:
2014
Conference Name:
25th International Nursing Research Congress
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Hong Kong
Description:
International Nursing Research Congress, 2014 Theme: Engaging Colleagues: Improving Global Health Outcomes. Held at the Hong Kong Convention and Exhibition Centre, Wanchai, Hong Kong

Full metadata record

DC FieldValue Language
dc.language.isoen_USen_GB
dc.language.isoenen
dc.type.categoryFull-texten
dc.typePresentationen
dc.titleParents Reactions to Multi-Disciplinary Perinatal Palliative Care During Pregnancy With a Lethal Fetal Diagnosisen
dc.title.alternativeTraumatic Issues in the Pediatric Populationen
dc.contributor.authorCote-Arsenault, Deniseen
dc.contributor.departmentNon-memberen
dc.author.detailsDenise Cote-Arsenault, PhD, RN, d_cotear@uncg.eduen
dc.identifier.urihttp://hdl.handle.net/10755/335036-
dc.description.abstractSession presented on Monday, July 28, 2014: Purpose: Some parents learn through prenatal testing that their wished-for child has abnormalities that are incompatible with life. Their fetal diagnoses launch them into appointments with sonographers, obstetricians, genetic counselors, perinatologists, maternal-fetal medicine specialists, bereavement nurses, perinatal palliative care programs, hospice, and neonatologists. The purpose of this presentation is to describe parents' reactions to interactions with care providers from multi-disciplines during such pregnancies and to make recommendations of useful interaction styles to care providers. Methods: Naturalistic, longitudinal. Inclusion criteria: currently pregnant mothers and their willing partners who intend to continue their pregnancy, are 18 years of age or older, speak English and do not have a multiple gestation. Recruitment was done through care providers who obtained permission to contact for us. The goal was to have two interviews with both parents during pregnancy and two more after the birth/death of the baby. The PI conducted all of the interviews either in-person, on the phone, or via video-conference; all interviews were recorded, professionally transcribed, and transcripts were carefully verified. Field notes were included in the transcripts, then entered into Atlas.ti for data management. Analysis was an iterative process that began at the interview, then moved to transcript texts; done independently and then with the research team. Memos were written, categories and themes were identified; exemplar quotes were extracted. Results: 16 mothers and 14 partners were interviewed; most were interviewed 3 times over 6 months. Interviews lasted 1-2 hours. Parents were interviewed together and separately, to gain their unique views. Parents found that compassionate, straight forward, and non-judgmental care providers were very helpful. Unhelpful approaches included silence, withholding information, absent of hope, making assumptions, not asking about personal preference, and only focusing on the baby's abnormalities. Interactions with care providers that were helpful led to parental understanding of their baby's condition, assisted them with birth planning, supported their grief, and facilitated their relationship with their baby, and their personal growth. Unhelpful interactions caused emotional distress, anger, frustration, and increased grief. Care coordination across disciplines was seen as very helpful, supportive, and caring. Using quotes from both parents, recommendations for care providers and perinatal palliative care will be presented. Conclusion: Parents' journey drastically changes course after learning their fetal diagnosis. Interactions with multiple care providers can be stressful or helpful. Coordination of care could reduce the stress and provide helpful support for parents. Given the painful situation parents are in, the best possible care should be given that honors the baby and facilitates healthy grieving of the parents.en
dc.subjectinterprofessional careen
dc.subjectperinatal palliative careen
dc.subjectnaturalistic researchen
dc.date.available2014-11-17T13:42:33Z-
dc.date.issued2014-11-17-
dc.date.issued2014-11-17en
dc.date.accessioned2014-11-17T13:42:33Z-
dc.conference.date2014en
dc.conference.name25th International Nursing Research Congressen
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen
dc.conference.locationHong Kongen
dc.descriptionInternational Nursing Research Congress, 2014 Theme: Engaging Colleagues: Improving Global Health Outcomes. Held at the Hong Kong Convention and Exhibition Centre, Wanchai, Hong Kongen
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