A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units

Abstract

PurposeTo explore parents' experiences during the admission of their children to a pediatric intensive care unit (PICU).MethodQualitative method using in-depth interviews. Thematic analysis was applied to capture parents’ experiences. Thirty-nine mothers and 25 fathers of 41 children admitted to seven of the eight PICUs in university medical centers in The Netherlands were interviewed.ResultsParents were interviewed within 1 month after their child’s discharge from a PICU. Thematic analysis identified 1,514 quotations that were coded into 63 subthemes. The subthemes were categorized into six major themes: attitude of the professionals; coordination of care; emotional intensity; information management; environmental factors; parent participation. Most themes had an overarching relationship representing the array of experiences encountered by parents when their child was staying in a PICU. The theme of emotional intensity was in particular associated with all the other themes.ConclusionsThe findings provided a range of themes and subthemes describing the complexity of the parental experiences of a PICU admission. The subthemes present a systematic and thematic basis for the development of a quantitative instrument to measure parental experiences and satisfaction with care. The findings of this study have important clinical implications related to the deeper understanding of parental experiences and improving family-centered care.Electronic supplementary materialThe online version of this article (doi:10.1007/s00134-010-2074-3) contains supplementary material, which is available to authorized users.

An Electronic Delphi Study to Establish Pediatric Intensive Care Nursing Research Priorities in Twenty European Countries*

“…These researchers operate in a PIC research group or even work on international level with other PICUs. A multicenter study on end-of-life practices has been active previously by the support of ESPNIC and identified the decision-making practices to forgo life-sustaining treatments (20)(21)(22). Another group of nurse researchers is active in pain and sedation management.…”

Talking With Parents About End-of-Life Decisions for Their Children

“…The factors that support them in coping with the loss of their child have received growing attention. [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15] Recent studies show that most parents find it helpful to share in their child's daily care during the dying process. Most of them also find it helpful to share in decisions to withhold or withdraw lifesustaining treatment (LST), decisions that often precede a child's death.…”

Atención centrada en el paciente y la familia en la Unidad de Cuidado Intensivo Pediátrico del hospital Pablo Tobón Uribe, sistematización de la experiencia

“…De ahí la importancia de cuestionarse el quehacer cotidiano en el interior de las UCIP, como ocurrió en la experiencia presentada, en la cual un espacio de escucha se convirtió en un escenario de transformación del rol asistencial, al ser capaz de ponerse en el lugar del otro y comprender sus necesidades desde otro punto de vista. Existe evidencia de la importancia de esto como estrategia fundamental de humanización del servicio en las UCIP (17,18), más aún si se reconoce a la UCIP como lugar intimidante para padres y familiares de niños críticamente enfermos, al experimentar una pérdida de control y una sensación de total impotencia (19).…”