Experiencing the pediatric intensive care unit: Perspective from parents of children with severe antecedent disabilities*

Graham, Robert J.; Pemstein, D. M.; Curley, Martha A. Q.

doi:10.1097/ccm.0b013e3181a00578

Cited by 65 publications

(100 citation statements)

References 43 publications

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“…Nurses caring for this growing population of children must be adept at providing care to patients with complex conditions and a high level of technology dependence, but they must also have the ability to work with families who face a unique and often ongoing set of challenges. These families often present to the PICU with expertise in caring for their child, and they want that expertise to be honored and valued (Graham, Pemstein, & Curley, 2009; Reeves, Timmons, & Dampier, 2006), something best done by a set of caregivers who can provide consistent care. Additionally, these families are often in the PICU because of a health crisis that may represent a worsening of their child’s condition, and they are likely to be dealing with the grief and loss associated with such an event.…”

Section: Discussionmentioning

confidence: 99%

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit

et al. 2016

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Background Parents of children with complex, chronic conditions report a desire for continuity of care, but relatively little is known about the ways in which nursing continuity of care occurs and the extent to which it is delivered in the inpatient setting. Objectives The objective of this analysis, which arose from a study on best practices in parent/nurse interactions in the pediatric intensive care unit (PICU), was to explore the delivery of continuity of nursing care in the PICU from the perspective of both parents and nurses. Methods A qualitative, grounded theory study using situational analysis was conducted with seven parents, and 12 nurse participants from a single PICU. Data sources included in-depth interviews, observation, and organizational written materials. Data were coded and analyzed using memoing and situational and positional maps to highlight emerging themes, context, and positions within the data. Results Parents repeatedly endorsed a desire for continuity of nursing care, wanting to ensure that the bedside nurse valued their child as an individual and understood the complexities of the child’s care regimen. Nurses understood this need but faced both contextual and personal challenges to achieving continuity, including fluctuations in staffing needs, training demands, fear of emotional entanglement, and concern for missed learning opportunities. Discussion Continuity of nursing care is highly valued by parents of children with CCC in the PICU, but significant barriers to optimal delivery exist within the current critical care environment. Mechanisms for supporting nurses to deliver continuity of care are needed, as are alternative ways to help parents feel that all nurses caring for their child have the knowledge necessary to deliver safe and compassionate care.

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Section: Discussionmentioning

confidence: 99%

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit

et al. 2016

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“…Similarly, parents want to share their specialist knowledge of the child, 45,53 including cues and indicators of pain, 44,52 and physical, emotional and spiritual needs. 47 Yet some parents report that their medical knowledge is often either not solicited or disregarded, 38,62 and their questions and concerns are left unaddressed. 39,52,55 A study by de Vos et al 37 found that only a third of clinicians invited families to share their observations about the child’s ability to interact or their perceptions of the child’s level of comfort.…”

Section: Synthesis Of Findingsmentioning

confidence: 99%

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

Richards

Starks

O’Connor

et al. 2017

J Hosp Palliat Nurs

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This paper reports result from a systematic search and thematic analysis of qualitative literature to identify key issues related to family-centered care, behaviors, and communication skills that support the parental role and improve patient and family outcomes in the PICU. Five themes were identified: 1) sharing information; 2) hearing parental voices; 3) making decisions for or with parents; 4) negotiating roles; and 5) individualizing communication. These themes highlight several gaps between how parents want to be involved and perceive clinicians engage them in the care of their child. Parental preferences for involvement differ in the domains of information sharing, decision making, and power-sharing across a spectrum of parental roles from parents as care provider to care recipient. The PICU setting may place clinicians in a double bind trying to both engage families and protect them from distress. Asking families of critically ill children about their preferences for participation across these domains may improve clinician-family relationships.

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“…The number of interviews, although small, is similar to the number typically needed to reach thematic saturation in other qualitative studies. 22,23 Future directions of our research will entail different study designs, such as interviewing the parents immediately after the delivery of bad news, using interviewers and coders who do not normally work in the medical field to minimize professional bias coming from having been the bearer of bad news in the past, or designing multi-institution studies to have different cultural and institutional backgrounds represented, as well as a vast array of different medical conditions in different stages of the disease process.…”

Section: Discussionmentioning

confidence: 99%

“To Be a Phenomenal Doctor You Have To Be the Whole Package”: Physicians' Interpersonal Behaviors during Difficult Conversations in Pediatrics

Orioles

Miller

Kersun

et al. 2013

Journal of Palliative Medicine

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Experiencing the pediatric intensive care unit: Perspective from parents of children with severe antecedent disabilities*

Cited by 65 publications

References 43 publications

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit

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

“To Be a Phenomenal Doctor You Have To Be the Whole Package”: Physicians' Interpersonal Behaviors during Difficult Conversations in Pediatrics

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