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Priority Outcomes inCritically IllChildren: A Patientand ParentPerspective Nora FayedSaoirse CameronDouglas Fraser2020 год

Priority Outcomes in Critically Ill Children: A Patient and Parent Perspective
статья из журнала

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Аннотация: Background Outcomes in pediatric critical care research are typically selected by the researcher. Objectives (1) To identify outcomes prioritized by patients and their families following a critical illness and (2) to determine the overlap between patient-centered and researcher-selected study outcomes. Methods An exploratory descriptive qualitative study nested within a longitudinal cohort study conducted in 2 pediatric intensive care units (PICUs). Participants were purposively sampled from the primary cohort to ensure adequate demographic representation. Qualitative descriptive approaches based on naturalistic observation were used to collect data and analyze results. Data were coded by using the International Classification of Functioning, Disability, and Health Children and Youth (ICF-CY) framework. Results Twenty-one participants were interviewed a mean of 5.1 months after PICU discharge. Outcomes fell into 2 categories: patient-centered and family-centered. In the former, diagnosis, survival, and prognosis were key priorities during the acute critical illness. Once survival appears possible, functioning (physical, cognitive, and emotional), and factors that influence recovery (ie, rehabilitation, environment, and quality of life) are prioritized. Family-centered outcomes consisted of parents’ psychosocial functioning and experience of care. Patient-centered outcomes were covered well by the selected study measures of functioning, but not by the clinical outcome measures. Conclusion Functioning and quality of life are key patient-centered outcomes during recovery from critical illness. These are not well captured by end points typically used in PICU studies. These results justify the importance of patient- and family-centered outcomes in PICU research and a need to determine how these outcomes can be comprehensively measured.
Год издания: 2020
Авторы: Nora Fayed, Saoirse Cameron, Douglas Fraser, Jill I. Cameron, Samah Al-Harbi, Racquel Simpson, Maha Wakim, Lily Chiu, Karen Choong
Издательство: American Association of Critical-Care Nurses
Источник: American Journal of Critical Care
Ключевые слова: Family and Patient Care in Intensive Care Units, Infant Development and Preterm Care, Intensive Care Unit Cognitive Disorders
Другие ссылки: American Journal of Critical Care (PDF)
American Journal of Critical Care (HTML)
Scholarship - Western (Western University) (PDF)
Scholarship - Western (Western University) (HTML)
PubMed (HTML)