The Experience of Long-Stay Parents in the ICU: A Qualitative Study of Parent and Staff Perspectives

Abstract

Over time, long-stay families will likely become more familiar with the environment of the ICU, more knowledgeable about their child's medical needs and more familiar with the staff looking after their child. This has a number of implications for staff working in the ICU.

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

“…Early in our study, we found that all parents commented that nurses both facilitated and inhibited parental involvement in their infant's physical care; this belief is echoed in the literature regarding parent participation in the PICU (Ames et al, 2011;Cantwell-Bartl and Tibballs, 2013;Geoghegan et al, 2016). As their participation increased, parents began to view themselves as experts in the care of their infant.…”

“…Studies of parents whose infants had prolonged hospitalizations reported that parents began their infant's stay in the PICU naïve, but over time came to better understand the unit and its culture. For example, Geoghegan et al (2016) found that parents either developed strong relationships with the staff and came to know the culture of the unit, or became increasingly stressed over time and their "needs and concerns escalated". This finding was true for our prolonged-stay parents as well in that one of the two parent dyads formed a highly functional working relationship with the health care team while the other dyad developed an active distrust of the clinicians and experienced multiple conflicts related to their infant's care.…”

“…This finding was true for our prolonged-stay parents as well in that one of the two parent dyads formed a highly functional working relationship with the health care team while the other dyad developed an active distrust of the clinicians and experienced multiple conflicts related to their infant's care. Nurses in the Geoghegan et al (2016) study also believed that prolonged stay parents became "institutionalized" to the PICU, meaning they develop an understanding of the environment and inner workings (or culture) of the PICU. This too was observed in our study in part when parents routinely used previously unknown medical terminology when discussing their infant's condition and their observations of the PICU environment.…”

“…As reported in Baird et al (2016), parents preferred having consistent nurses and expressed relief when this occurred; parents experienced frustration when faced with frequent new caregivers and felt it necessary to remain vigilant at the bedside. Parents in the Geoghegan et al (2016) study also expressed that finding out which nurse would be caring for their child would either produce the sentiment "Oh thank goodness" or "Oh, my God, this is going to be a hell of…" (p. e499). Perhaps one barrier to the implementation of consistent caregivers in the PICU is the nurses themselves.…”

Modos de ser de profissionais de enfermagem em terapia intensiva pediátrica

“…E a participação mais ativa permite uma percepção de que todo o possível está sendo feito. 4 17 Portanto, pode-se afirmar que a qualidade da comunicação entre os profissionais de Enfermagem e a família, por vezes, é deficiente, sendo justificada pela formação profissional mecanicista, com ênfase nos procedimentos, com excesso de atribuições administrativas, no caso do enfermeiro. 10 A discrepância no linguajar dos profissionais e da família causa interferências na comunicação, prejudicando a capacidade desta em participar das decisões terapêuticas propostas para o filho.…”