Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study

Abstract

Background Children with medical complexity (CMC) account for an increasing proportion of pediatric intensive care unit (PICU) admissions across North America. Their risk of unscheduled PICU admission is threefold compared to healthy children, and they are at higher risk of prolonged length of stay and PICU mortality. As a result of their sophisticated home care needs, parents typically develop significant expertise in managing their children’s symptoms and tending to their complex care needs at home. This can present unique challenges in the PICU, where staff may not take parents’ advanced expertise into account when caring for CMC. The study aimed to explore the experiences of parents of CMC during PICU admission. Methods This interpretive descriptive study was performed in the PICU of one Canadian, quaternary care pediatric hospital. Semi-structured interviews were conducted with 17 parent caregivers of 14 CMC admitted over a 1-year period. Results Parents of CMC expected to continue providing expert care during PICU admission, but felt their knowledge and expertise were not always recognized by staff. They emphasized the importance of parent-staff partnerships. Four themes were identified: (1) “We know our child best;” (2) When expertise collides; (3) Negotiating caregiving boundaries; and (4) The importance of being known. Results support the need for a PICU caregiving approach for CMC that recognizes parent expertise. Conclusions Partnership between staff and parents is essential, particularly in the case of CMC, whose parents are themselves skilled caregivers. In addition to enhanced partnerships with health care professionals, needs expressed by parents of CMC during PICU hospitalization included improved communication with staff, and more attention to continuity of care in the PICU and across hospital services. Parent-staff partnerships must be informed by ongoing communication and negotiation of caregiving roles throughout the course of the child’s PICU hospitalization.

Stakeholder perspectives: Communication, care coordination, and transitions in care for children with medical complexity

“…Coordinated care and inclusive communication during hospitalizations for CMC require collaboration among stakeholders to support successful transitions in care. Parents' involvement is key, as they are experts in the care of their children, and often have a sense of intuition about their health and well‐being (Lauver, 2010; Rennick et al, 2019). However, parents in this study reported feeling overlooked and excluded during hospitalizations and worried about intruding when providers and nurses were providing care, similar to another study (Rennick et al, 2019).…”

“…Some within hospital transitions can be reassuring for parents, particularly when they reflect a child's improving condition, but they may also provoke anxiety by requiring adaptation to a new environment, staff, and approaches to care (Berube et al, 2014; Suleman et al, 2019). Communication and care coordination are crucial during hospital transitions for CMC: poor communication and ineffective care coordination lead to incomplete medical histories, unnecessary and inconsistent testing and treatment, medical errors, frustration for providers and parents, and parental discomfort (Foster et al, 2017; Leary et al, 2020; Rauch, 2018; Rennick et al, 2019). Parents of hospitalized CMC value consistent, regular communication with the care team, regardless of the child's status, without having to ask (Berube et al, 2014; Falkenburg et al, 2018).…”

“…Parents of hospitalized CMC value consistent, regular communication with the care team, regardless of the child's status, without having to ask (Berube et al, 2014; Falkenburg et al, 2018). Parents desire an active role during hospitalizations but report that their expertise is rarely welcomed or acknowledged, and they face substantial challenges participating in communication about the care of their child (Ballantyne et al, 2017; Leyenaar et al, 2017; Rennick et al, 2019).…”

“…Other models implement weekly care coordination rounds, during which the inpatient team and PCP discuss discharge goals, postdischarge referrals, and durable medical equipment needs (White et al, 2017). Despite these efforts to improve communication, care coordination, and transitions in care during hospitalizations for CMC, difficulties persist, causing parent distress (Ballantyne et al, 2017; Berube et al, 2014; Rennick et al, 2019). As a result, CMC continue to experience fragmented, uncoordinated care.…”

To Improve the Inpatient Experience, Invest in the Human Side of Health Care

“…[4][5][6] Parent experiences of communication with nurses, with whom parents engage most frequently and share a caregiving role during hospitalization, influence parent satisfaction with inpatient care and enable a sense of parent inclusion as an integral member of the care team. 7,8 Children themselves have identified nurse behaviors as influential to their hospital experience, including nurses' use of kind words, pain reduction efforts, offering humorous diversion and conversation, promotion of a sense of well-being, attention to basic needs, respectful interactions and treatment as an individual, and giving comfort and reassurance. Importantly, Feng et al 3 parents are fundamental aspects of caregiving, which is primarily relational work that requires time for meaningful interpersonal interactions.…”