Exploring ‘family’ in paediatric intensive care family-centred-care research: A concept analysis

Objectives

Family-Centred Care (FCC) is a cornerstone of Paediatric Intensive Care Unit (PICU) care. While FCC is well defined, debate exists as to how ‘family’ is or should be defined. FCC research commonly focuses on parents, particularly mothers. To ensure PICU research represents all family members’ voices, understanding how family is currently used and understood within PICU research is required. Therefore, this systematic concept analysis explored the concept of ‘family’ within PICU FCC research.

Methods

Following Rodgers’ Evolutionary Concept Analysis method, a systematic search of Cumulative Index of Nursing and Allied Health Literature, OVID Medline, Allied and Complementary Medicine Database, PsycINFO, and Nursing and Allied Health Database (ProQuest) was conducted in November 2023. All citations underwent two stage screening based on a pre-developed protocol. Data related to attributes, antecedents, and consequences were extracted and analysed using open coding.

Results

Twenty-four articles were included. Attributes of ‘family’ in PICU FCC research included: Family characteristics; Recognition of adversity and vulnerability, and Evolving expectations of family. Antecedents included: A child in PICU; (Child)- and Family-Centred Care; and Hospital culture and environment. Consequences included impacts on delivery of care in PICU; and impact on PICU research.

Conclusions

Despite addressing a range of important issues, FCC research in PICUs lacks a clear definition and operationalisation of the concept of ‘family’. This impacts on subsequent care and research design. Addressing this gap is key to developing an inclusive FCC culture in PICU research.

Implications for clinical practice

A historically narrow definition of family means that most PICU family support is aimed at parents. To meet the needs of a changing society, clinical support services should consider extended family, including grandparents and siblings. More broadly, PICUs should challenge the definition and operationalisation of “family centred care” to ensure families are properly supported during a PICU admission.