Parent perceptions of the impact of the Paediatric Intensive Care environment on delivery of family-centred care

Abstract

In the paediatric intensive care unit, family centred care operationalised as policy differed from actual parent experiences. The impact of the physical and cultural environment should be considered in the delivery of critical care, as the environment was shown to impact implementation of each of the core concepts.

Caregiver experiences of paediatric inpatient cardiac services: A qualitative systematic review

“…(35,38,(44)(45)(46) Minor concerns: 4 studies had moderate to major concerns, offering limited or superficial data. (16,17,37,46) No or very minor concerns: no or very minor outlier data was found across studies.…”

“…(40,41) No or very minor concerns: one study offered moderate amounts of outlier information. (37) Minor concern: 7 studies were appraised to contribute methodological limitations. (14,16,20,(40)(41)(42)45) High confidence: due to a high number of contributing studies concluding minor concerns in methodological limitations, relevance and adequacy.…”

“…23 Studies contributed to this theme. (15,(17)(18)(19)(20)(22)(23)(24)34,(35)(36)(37)(38)(39)(40)(41)(42)(43)(44)(45)(46)(47)(48)(49) Minor concerns: studies represented fathers, mothers and grandparents across 9 countries. Only 5 studies were partially relevant, exploring beyond hospital setting context.…”

“…This was exacerbated by inconsistency across professionals: 'It depends on the nurse working as to how involved I can be with daily cares' [Parent]. 37 A caregiver's ability to protect their unwell child was primarily compromised by their medical incompetence, generating feelings of powerlessness and loss of parental identity, particularly during intensive care stays: 'What is a parent who cannot help his child?' [Father].…”

The Evolutionary Nature of Parent–Provider Relationships at Child’s End of Life With Cancer

“…These relationships have been studied in varied contexts such as parenting and bereavement follow-up (Berrett-Abebe et al, 2017; Meert et al, 2015), with most emphasis on intensive care (Butler et al, 2018a, 2018b), cancer palliative care settings (Ljungman et al, 2016; van der Geest et al, 2013), and providers’ communication (Feudtner, 2007; Meert et al, 2008). Reciprocal social interactions are those in which parents and health care workers engage in back-and-forth communication to build productive relationships that meet the needs of children and their families (Hill et al, 2018). Hence, professional education is needed with respect to parental preferences and children and adolescent developmental status (Smith et al, 2019).…”