Family Participation during Intensive Care Unit Rounds: Goals and Expectations of Parents and Health Care Providers in a Tertiary Pediatric Intensive Care Unit

Abstract

Some agreement in goals for parent participation in morning rounds exists, although there are opportunities to calibrate expectations for both parents and health care providers. Solutions may involve a protocol for orienting parents to morning rounds, focusing on improving communication with parents outside of morning rounds, and the preservation of a forum for providers to have private discussions as a team.

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

“…37,46,48,52,56,57,63 Exercising this authority may be done to achieve the well-intentioned goal of alleviating family distress, but it also serves the medical-centered goals of efficiency and the enforcement of rules and norms. 39,63,68 In contrast, parents reported a wish to have a more active role in their child’s care, in which they had greater access to information, 42,43,46–50,53 more participation in the development of treatment plans, 42–44,53,61 and more recognition and inclusion of their knowledge and concerns about the child. 44,51,62 This involvement may reduce parental emotional distress by allowing them to fulfill a parental role to protect their child’s life and ensure higher quality of care.…”

“…42,44,49,52 Parents reported that they wanted to receive information even when it was potentially distressing 42,43,53 and wanted to be informed about decisions even when clinicians are the primary decision-makers. 43,51,52,54 Two articles by Carnevale et al (2006; 2007) suggest that improved coping may help parents feel less fear and regret, and facilitate closure and grieving if the child dies.…”

“…They want to be involved to improve the child’s quality of care by sharing important information, correcting misinformation, helping to avoid medical errors, and preventing infections 42–45,48,53,61 . 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.…”

Trends in Congenital Heart Disease

“…Increased involvement of the patient and family in the inpatient care process is already the expectation in many hospitals. 145,146 In the future, it will be increasingly common that patients and their families will have primary relationships with other similarly affected families, mediated by networked social media and to a great extent outside the direct control of physicians and hospitals. These relationships will facilitate forms of self-advocacy that will reshape the nature of traditional care relationships, and are likely to result in new patterns of self-referral and institutional, disease-and procedure-based specialization.…”

How do doctors and nurses manage delirium in intensive care units? A qualitative study using focus groups

“…A FG is a method of qualitative data collection, 33–35 used to study unexplored situations or those that are difficult to access via other methods. As well as confirming the hypothesis, developing questionnaires and designing intervention programmes, 34 FGs have been used in the ICU for the study of family participation during ICU rounds, 36 the cultural competence of ICU professionals, 37 the identification of barriers for enteral feeding in critically ill patients and the role of the nurse in the identification of delirium and the application of non-pharmacological treatment. 38 …”