An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit

Abstract

Although the modern pediatric intensive care unit (PICU) has followed general pediatrics and adopted the family-centered care model, little is known about how families prospectively experience PICU care. The authors' goal was to better understand the experiences of families whose child was hospitalized in a PICU. They conducted a 12-month prospective ethnographic study in a PICU in a tertiary care hospital in a large North American urban center. Data were obtained via participant-observation and formal and informal interviews with 18 families and staff key informants. Findings revealed a disconnect between the espoused model of family-centered care and quotidian professional practices. This divergence emerged in the authors' analysis as a heuristic that contrasts a professional "office" to a sick child's "bedroom." PICU practices and protocols transformed the child into a patient and parents into visitors; issues such as noise, visitation, turf, and privacy could favor staff comfort and convenience over that of the child and family. The authors' discussion highlights suggestions to overcome this divergence in order to truly make the PICU family centered.

Association between medical home characteristics and staff professional experiences in pediatric practices

“…MHI items included in the organizational capacity domain encompass the provision of family-centered care at all levels of the organization. Several studies note the difficulties in implementing family centered care [30, 31]. Finally, our results suggest that higher data management scores are positively associated with professional efficacy.…”

Elements of Family-Centered Care in the Pediatric Intensive Care Unit

“…These goals are often in tension with each other because clinicians have come to prioritize rules and norms that do not necessarily meet the needs of individual patients and families. Macdonald et al 68 also found that there was a conflict between the interests of families and clinicians, and rules regarding behavior and noise levels were applied to parents and not to PICU staff. These different standards for behavior are attributed to whether parents are viewed as (and made to feel like) guests or visitors 38,68 or members of the health care team.…”

“…Macdonald et al 68 also found that there was a conflict between the interests of families and clinicians, and rules regarding behavior and noise levels were applied to parents and not to PICU staff. These different standards for behavior are attributed to whether parents are viewed as (and made to feel like) guests or visitors 38,68 or members of the health care team. 39 …”

Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

“…Similarly parents' expectations of being involved in decisions about their child's care will be realised. However, Darbyshire's (1993) description of partnership-in care as 'one of paediatric nursing's most amorphous and ill-described concepts' (page 1672), remains relevant because recent evidence suggests that implementing family-centred care and partnership-in care remains challenging (Ladak, Premji, Amanullah, Haque, Ajani, et al, 2013;Macdonald, Liben, Carnevale & Cohen, 2012;Uhl, Fisher, Docherty & Brandon, 2012).…”