Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.

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Life-limiting fetal conditions and pregnancy continuation: parental decision-making processes

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002857 ◽

2021 ◽

pp. bmjspcare-2020-002857

Author(s):

Erin Denney-Koelsch ◽

Denise Cote-Arsenault

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Medical Information ◽

Healthcare Providers ◽

Shared Decision ◽

Parental Decision ◽

Parental Decision Making ◽

Case Comparison ◽

Theme Identification ◽

Iterative Coding

ObjectivesWhen parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.MethodsThis study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents’ experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison.ResultsThirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents’ experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk–benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets.ConclusionFor shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents’ subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.

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511: Factors Involved in Parental Decision-Making for Surgical Correction of Vesicoureteral Reflux

The Journal of Urology ◽

10.1016/s0022-5347(18)30751-1 ◽

2007 ◽

Vol 177 (4S) ◽

pp. 170-170

Author(s):

Pamela I. Ellsworth ◽

Katherine Callaghan ◽

Eileen Gray ◽

Anthony Caldamone

Keyword(s):

Decision Making ◽

Vesicoureteral Reflux ◽

Surgical Correction ◽

Parental Decision ◽

Parental Decision Making

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Using messy map interviews to describe and analyse elements pertinent to interviewees

Qualitative Research ◽

10.1177/1468794120979931 ◽

2020 ◽

pp. 146879412097993

Author(s):

Maja Nordtug

Keyword(s):

Decision Making ◽

Qualitative Research ◽

Human Papillomavirus ◽

Human Papillomavirus Vaccination ◽

Parental Decision ◽

Mapping Tool ◽

Parental Decision Making ◽

Interview Studies

In this article, I introduce and evaluate the use of messy map interviews. Based on messy situational maps, messy map interviews is an interview tool I have developed to facilitate understanding of elements pertinent to interviewees. I present and evaluate how the tool contributes to interview studies that aim to describe and analyse elements pertinent to interviewees. This is done by use of an exemplar of working with messy map interviews, exploring parental decision-making about human papillomavirus vaccination. Based on the results, the study shows that messy map interviews can help keep qualitative research loyal to what interviewees ascribe relevance to. Furthermore, the tool can potentially help nuance the analysis of how elements are understood by interviewees. The article concludes that messy map interviews can be a useful mapping tool that keeps interviewees’ perspectives in focus in interview studies.

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Parental decision making regarding consent to randomization on Children's Oncology Group AALL0932

Pediatric Blood & Cancer ◽

10.1002/pbc.28907 ◽

2021 ◽

Vol 68 (4) ◽

Author(s):

Kellee Parker ◽

Erika Cottrell ◽

Linda Stork ◽

Susan Lindemulder

Keyword(s):

Decision Making ◽

Oncology Group ◽

Parental Decision ◽

Parental Decision Making

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Parental Decision-Making for Surgery and Anesthesia in Young Children

Western Journal of Nursing Research ◽

10.1177/01939459211021622 ◽

2021 ◽

pp. 019394592110216

Author(s):

Audrey Rosenblatt ◽

Michael Kremer ◽

Olimpia Paun ◽

Barbara Swanson ◽

Rebekah Hamilton ◽

...

Keyword(s):

Health Care ◽

Decision Making ◽

Young Children ◽

Cognitive Processing ◽

Emotional Processing ◽

Theory Analysis ◽

Parental Decision ◽

Parental Decision Making ◽

Health Care Context ◽

The Relationship

Millions of young children undergo surgery and anesthesia each year, yet there is a lack of scientific consensus about the safety of anesthesia exposure for the developing brain. Also poorly understood is parental anesthesia-related decision-making and how neurotoxicity information influences their choices. The theoretical model of parental decision-making generated in this research explicates this process. Interviews with 24 mothers yielded a theoretical framework based on their narratives developed using a qualitative grounded theory analysis. Five major themes emerged from these interviews: emotional processing, cognitive processing, relationships as resources, the mother/child dyad, and the health care context. Mothers described a non-linear, iterative process; they moved fluidly through emotional and cognitive processing supported by relationships as resources and influenced by the health care context. A key element was the subtheme of the medical translator, an individual who provided context and information. The mother/child dyad grounded the model in the relationship with the child.

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