PB1299 - Obstetrical decision-making in moderate or severe hemophilia A and B: a qualitative study exploring parents’ experiences, preferences and needs

Tuesday, June 27, 2023

18:30 – 19:30 ET

Room: Exhibition

Co-Author(s)

SL

Shannon J. Lane, MPH

Research Coordinator
McMaster Centre for Transfusion Research, McMaster University
Hamilton, Ontario, Canada
NC

Nancy Carter, RN, PhD

Assistant Dean, Graduate Nursing Programs and Associate Professor, School of Nursing
McMaster University, Hamilton, ON, Canada
Hamilton, Ontario, Canada
EA

Erika Aberg, MSc, CCGC, CGC

Genetic Counsellor
Maritime Medical Genetics Service, IWK Health
Halifax, Nova Scotia, Canada
JC

Joan Crane, MD, MSc, FRCSC

Maternal Fetal Medicine Specialist, Professor Obstetrics and Gynecology
Women's Health, Eastern Health; Memorial University of Newfoundland
St. John's, Newfoundland and Labrador, Canada
JE

Julie Emberley

Associate Professor Pediatrics
University of Manitoba
Winnipeg, Manitoba, Canada
NH

Nancy M. Heddle, MSc, FSCML (D)

Investigator, McMaster Centre for Transfusion Research
McMaster University
Hamilton, Ontario, Canada
RK

Robert J. Klaassen, MD, FRCP(C)

Scientist, CHEO Research Institute; Professor, Department of Pediatrics
Children’s Hospital of Eastern Ontario
Ottawa, Ontario, Canada
Michelle Sholzberg, MDCM, FRCPC, MSc., MDCM, FRCPC, MSc

Head, Division of Hematology-Oncology
Departments of Medicine, and Laboratory Medicine and Pathobiology, Li Ka Shing Knowledge Institute, University of Toronto, Toronto, ON, Canada
Toronto, Ontario, Canada

Presenting Author(s)

Anthony KC. Chan, MBBS

Professor
McMaster University, McMaster Children’s Hospital, Hamilton, Canada
Hamilton, Ontario, Canada

Background: When an infant could be born with moderate or severe hemophilia A or B, management of the child and birthing parent can be complex; numerous risks require specialized medical management and decision-making along the care pathway. Parental involvement in decision-making is essential and little is known about the decision-making experiences of parents who have navigated this medical system.

Aims: The objectives were to explore parents’ experiences and involvement in medical decision-making through pre-, peri- and post-natal periods and identify strategies to enhance decision-making processes.

Methods: We used an exploratory, descriptive, qualitative study design. Eligible participants included parents who gave birth up to 10 years prior, who knew before delivery that their child had or could have moderate or severe hemophilia A or B. Dyadic and individual interviews were used to collect data. Thematic analysis and the framework method were used for analysis. The coding framework was developed by four members of the team and two members were involved in coding. REB approval and consent were obtained.

Results: Analysis included 11 participants from two provinces. Many participants described a collaborative approach to decision-making with healthcare providers (HCPs). Labour and delivery management plans were developed for most participants; some with parental engagement, some primarily by HCPs. Most participants did not receive a written copy of the plan. Variability was noted in the aspects of care where parents were engaged in decisions, and in the options presented to parents (e.g. location/mode of delivery, circumcision). Some participants perceived that plans were not adequately reviewed or followed by HCPs. Adequate information and choice helped enable parents’ involvement in decision-making.

Conclusion(s): Our findings reveal important considerations for engagement in medical decision-making. We recommend the development of a toolkit to standardize information provided to parents and facilitate shared decision-making on key decision points and dissemination of information along the care pathway.