Family centred care in the paediatric critical care setting: Child, parent and staff perspectives

Abstract

Introduction: Family centred care (FCC) is described as a philosophy of care however the definition, practice, reported benefits and deficits of FCC continue to be critiqued. The aim of this study was to explore staff and parents’ perception of FCC, parental needs and spirituality and the hospitalised child’s (5-15years old) needs within a paediatric high dependency unit (PHDU).

Methods: A cross-sectional mixed methods design. Parents and staff completed the needs of parents questionnaire (NPQ), intrinsic spirituality scale (ISS) and 5 open ended questions. The children had an interview and drew a picture of a person in the hospital (CD:H). The interviews and long answer questions were transcribed verbatim and subjected to inductive thematic analysis. The NPQ, ISS and CDH scores underwent statistical analyses.

Results: One hundred and four parents, 88 staff and 26 school-aged children participated. The themes generated from the parents long answer questions were treatment, family, relationships, religion and meanings. Significant statistical differences between the staff and parents’ NPQ responses were evident in 70 needs statements and 5 category mean scores. The mean ISS score for staff was higher (5.11, SD 3.0) than the parents (4.63, SD 3.17). The themes generated from the children’s interviews were relationships, support, play therapy and hospital. The child’s CD:H mean score was low (74.52, SD 28.55). Two parent, child and staff paediatric critical models of care were generated from the synthesized data. The models reflect the child’s, parents’ and staff’s experiences from admission through to transfer were influenced by the variables individual demographics, treatment, facilities, needs, coping strategies used, suffering or growth responses and health outcome.

Conclusion: The staff, parent’s and child’s perception of FCC, needs and spirituality often differed but remained interwoven and were influenced by time, environment, health, person and relationships. Both similarities and differences were noted to earlier studies and further testing of psychometric tools, conceptual models and theory development is required to advance the state of the science for FCC within paediatric critical care.