Illness Trajectories and Factors Influencing Care Decisions for Children with Life-Threatening Conditions Who Subsequently Die

2.50
Hdl Handle:
http://hdl.handle.net/10755/304414
Category:
Abstract
Type:
Presentation
Title:
Illness Trajectories and Factors Influencing Care Decisions for Children with Life-Threatening Conditions Who Subsequently Die
Author(s):
Brandon, Debra; Docherty, Sharron
Lead Author STTI Affiliation:
Beta Epsilon
Author Details:
Debra Brandon, PhD, RN, FAAN, brand005@mc.duke.edu; Sharron Docherty, PhD, CPNP;
Abstract:

Session presented on: Thursday, July 25, 2013

Purpose: Frequently, lack of diagnostic certainty is cited as rationale for delayed discussions of pediatric palliative care.  The purpose of this study was to describe illness trajectories and factors influencing care planning for children with LTCs who subsequently die.

Methods: A longitudinal case study design was used to study 11 cases involving infants with extreme prematurity (n=2), complex heart disease (n=5), or metabolic disorders requiring a stem cell transplant (n=4). Each case included an infant, parents, and providers (12 infants, 21 parents, 67 providers). Illness data, narrative interviews, and questionnaires were used across the trajectory of illness from birth/diagnosis until death.  Illnesses trajectories and factors influencing decision-making were analyzed using visualization methods integrating illness course, treatments, parental stress, anxiety and posttraumatic symptoms, and parent and provider levels of hope and perceptions of infant discomfort. 

Results: All infants died while receiving intensive care.  Three trajectory types were identified: a) escalation of care with improving health status, b) escalation of care with periods of stability and decline in health status, and c) escalation of care with declining health status. Parent and provider decision-making centered on single illness events such as sepsis or a treatment complication rather than the illness trajectory. Positive influences on care decisions included trusting parent-provider relationships, support of parental advocacy for infant, and provider team cohesion.  Negative influences included conflict and lack of congruence between parent and provider levels of hope and infant discomfort. Discussions regarding shifting the focus from curative to palliative care were delayed by a desire for prognostic certainty.

Conclusions: As with previous studies, prognostic uncertainty contributed to decision-making. The use of visual trajectory models in care planning allows foresight of several possible illness trajectories and precludes the need for prognostic certainty when discussing palliative care. This model may improve parent-provider relationships and facilitate pediatric decision-making.

Keywords:
pediatrics; quality of life; decision making
Repository Posting Date:
22-Oct-2013
Date of Publication:
22-Oct-2013
Conference Date:
2013
Conference Name:
24th International Nursing Research Congress
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Prague, Czech Republic
Description:
24th International Nursing Research Congress Theme: Bridge the Gap Between Research and Practice Through Collaboration. Held at the Hilton Prague Hotel.
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission.

Full metadata record

DC FieldValue Language
dc.language.isoen_USen_GB
dc.type.categoryAbstracten_GB
dc.typePresentationen_GB
dc.titleIllness Trajectories and Factors Influencing Care Decisions for Children with Life-Threatening Conditions Who Subsequently Dieen_GB
dc.contributor.authorBrandon, Debraen_GB
dc.contributor.authorDocherty, Sharronen_GB
dc.contributor.departmentBeta Epsilonen_GB
dc.author.detailsDebra Brandon, PhD, RN, FAAN, brand005@mc.duke.edu; Sharron Docherty, PhD, CPNP;en_GB
dc.identifier.urihttp://hdl.handle.net/10755/304414-
dc.description.abstract<p>Session presented on: Thursday, July 25, 2013</p><b><b>Purpose: </b></b> Frequently, lack of diagnostic certainty is cited as rationale for delayed discussions of pediatric palliative care.  The purpose of this study was to describe illness trajectories and factors influencing care planning for children with LTCs who subsequently die. <p><b><b>Methods: </b></b> A longitudinal case study design was used to study 11 cases involving infants with extreme prematurity (n=2), complex heart disease (n=5), or metabolic disorders requiring a stem cell transplant (n=4). Each case included an infant, parents, and providers (12 infants, 21 parents, 67 providers). Illness data, narrative interviews, and questionnaires were used across the trajectory of illness from birth/diagnosis until death.  Illnesses trajectories and factors influencing decision-making were analyzed using visualization methods integrating illness course, treatments, parental stress, anxiety and posttraumatic symptoms, and parent and provider levels of hope and perceptions of infant discomfort.  <p><b><b>Results</b>: </b> All infants died while receiving intensive care.  Three trajectory types were identified: a) escalation of care with improving health status, b) escalation of care with periods of stability and decline in health status, and c) escalation of care with declining health status. Parent and provider decision-making centered on single illness events such as sepsis or a treatment complication rather than the illness trajectory. Positive influences on care decisions included trusting parent-provider relationships, support of parental advocacy for infant, and provider team cohesion.  Negative influences included conflict and lack of congruence between parent and provider levels of hope and infant discomfort. Discussions regarding shifting the focus from curative to palliative care were delayed by a desire for prognostic certainty. <p><b><b>Conclusions: </b> </b>As with previous studies, prognostic uncertainty contributed to decision-making. The use of visual trajectory models in care planning allows foresight of several possible illness trajectories and precludes the need for prognostic certainty when discussing palliative care. This model may improve parent-provider relationships and facilitate pediatric decision-making.en_GB
dc.subjectpediatricsen_GB
dc.subjectquality of lifeen_GB
dc.subjectdecision makingen_GB
dc.date.available2013-10-22T20:35:23Z-
dc.date.issued2013-10-22-
dc.date.accessioned2013-10-22T20:35:23Z-
dc.conference.date2013en_GB
dc.conference.name24th International Nursing Research Congressen_GB
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen_GB
dc.conference.locationPrague, Czech Republicen_GB
dc.description24th International Nursing Research Congress Theme: Bridge the Gap Between Research and Practice Through Collaboration. Held at the Hilton Prague Hotel.en_GB
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission.en_GB
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