Jeffrey D Edwards1, Howard B Panitch2, Maureen George3, Anne-Marie Cirrilla4, Eli Grunstein5, Joanne Wolfe6,7, Judith E Nelson8,9, Rachel L Miller10. 1. Division of Critical Care and Hospital Medicine, Department of Pediatrics, Columbia University Valegos College of Physicians and Surgeons, New York, New York, USA. 2. Division of Pulmonary Medicine, Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA. 3. Columbia University School of Nursing, New York, New York, USA. 4. Department of Care Coordination/Social Work, New York-Presbyterian Morgan Stanley Children's Hospital, New York, New York, USA. 5. Division of Pediatric Otolaryngology, Columbia University Valegos College of Physicians and Surgeons, New York, New York, USA. 6. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 7. Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA. 8. Critical Care Service, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, New York, USA. 9. Palliative Medicine Service, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, New York, USA. 10. Division of Clinical Immunology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Abstract
OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics. RESULTS: The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity. CONCLUSIONS: The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.
OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics. RESULTS: The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity. CONCLUSIONS: The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.
Authors: Carol Bennett; Ian D Graham; Elizabeth Kristjansson; Stephen A Kearing; Kate F Clay; Annette M O'Connor Journal: Patient Educ Couns Date: 2009-06-26
Authors: Shannon S Carson; Maihan Vu; Marion Danis; Sharon L Camhi; Leslie P Scheunemann; Christopher E Cox; Laura C Hanson; Judith E Nelson Journal: Crit Care Med Date: 2012-01 Impact factor: 7.598
Authors: Tessie W October; Amy H Jones; Hannah Greenlick Michals; Lauren M Hebert; Jiji Jiang; Jichuan Wang Journal: Pediatr Crit Care Med Date: 2020-02 Impact factor: 3.624