Key points

Introduction

Patient-centered and family-centered care (PFCC) as an approach to care in adult and pediatric settings has been endorsed by major professional organizations, including the Institute of Medicine (IOM), the American College of Critical Care Medicine (ACCM), and the American Academy of Pediatrics (AAP). In 2001, the IOM made recommendations for changes to the health care system that emphasized the need for patient-centered care and the ongoing and open exchange of information between health care providers and patients. Patient-centered care was defined as care that is respectful of and responsive to individual patient preferences, needs, and values. In 2007, the ACCM strongly endorsed patient-centered care as defined by the 2001 IOM report, suggesting that patient and family involvement can profoundly influence clinical decisions and patient outcomes in intensive care units. This endorsement was based on the recognition that critically ill patients are often unable to participate in health care decisions and the expressed concerns of families and other surrogates that they are often poorly informed and excluded from decision making and day-to-day care of their loved ones.

With regard to the pediatric context, the AAP defines PFCC as “an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.” The AAP policy is based on the concept of collaboration among patients, families, physicians, nurses, and other professionals. These collaborative relationships are guided by 6 principles of PFCC ( Box 1 ). The AAP policy grows out of recent evidence that PFCC can improve outcomes for patients, families, and health care providers, decrease health care costs, and lead to more effective use of health care resources.

In this article, some of the ways that PFCC has been operationalized in pediatric intensive care units (PICUs) are discussed. Although PFCC is intended to permeate all aspects of health care, 4 areas of pediatric critical care practice have been emphasized in the literature. These areas include (1) family visitation; (2) family-centered rounding; (3) family presence during invasive procedures and cardiopulmonary resuscitation (CPR); and (4) family conferences.

Introduction

Patient-centered and family-centered care (PFCC) as an approach to care in adult and pediatric settings has been endorsed by major professional organizations, including the Institute of Medicine (IOM), the American College of Critical Care Medicine (ACCM), and the American Academy of Pediatrics (AAP). In 2001, the IOM made recommendations for changes to the health care system that emphasized the need for patient-centered care and the ongoing and open exchange of information between health care providers and patients. Patient-centered care was defined as care that is respectful of and responsive to individual patient preferences, needs, and values. In 2007, the ACCM strongly endorsed patient-centered care as defined by the 2001 IOM report, suggesting that patient and family involvement can profoundly influence clinical decisions and patient outcomes in intensive care units. This endorsement was based on the recognition that critically ill patients are often unable to participate in health care decisions and the expressed concerns of families and other surrogates that they are often poorly informed and excluded from decision making and day-to-day care of their loved ones.

With regard to the pediatric context, the AAP defines PFCC as “an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.” The AAP policy is based on the concept of collaboration among patients, families, physicians, nurses, and other professionals. These collaborative relationships are guided by 6 principles of PFCC ( Box 1 ). The AAP policy grows out of recent evidence that PFCC can improve outcomes for patients, families, and health care providers, decrease health care costs, and lead to more effective use of health care resources.

In this article, some of the ways that PFCC has been operationalized in pediatric intensive care units (PICUs) are discussed. Although PFCC is intended to permeate all aspects of health care, 4 areas of pediatric critical care practice have been emphasized in the literature. These areas include (1) family visitation; (2) family-centered rounding; (3) family presence during invasive procedures and cardiopulmonary resuscitation (CPR); and (4) family conferences.

Family visitation

Historically, PICUs have had restrictive visiting policies, allowing only brief visits by parents and disallowing visits by siblings or multiple family members (please see accompanying article elsewhere in this issue). Concerns underlying these restrictive policies included the potential for spread of infection; breach of privacy and confidentiality, emotional trauma to patients, parents and siblings; and lack of space and staff to accommodate family. However, research on the needs of families of critically ill patients has consistently shown that families desire information, assurance from staff, and proximity to their loved ones. Parents are the natural caregivers for their children. During their child’s critical illness, much of the caregiving role of parents is transferred to health professionals, because of the complex care required. This alteration of parental role has been identified as the greatest source of stress among parents in PICUs. Parents want to be recognized as important to their child’s recovery and participate in their child’s care. In response to an increasing awareness of parents’ needs, many PICUs have adopted 24-hour open visiting policies. Open visitation has been viewed as a first step in promoting family presence and involvement in care.

PICU environments may pose many challenges to open visitation. Environmental needs identified by parents include privacy, proximity, adequate space, control of sensory stimuli (eg, noise, lighting, smell), cleanliness, safety, facilities to care for self and others, access to their child, and the presence of people who provide professional and personal support. Having a place to sleep in the hospital or PICU has been identified by parents as an important yet frequently unmet need. In a study conducted before and after renovation of 2 PICUs, Smith and colleagues explored the impact of providing bed space for parents in the PICU on parents’ stress levels. Parents experiencing PICUs with parent bed space had less total stress and less stress related to parental role alteration than those experiencing PICUs without bed spaces. In addition to sleeping arrangements, other provisions such as meal vouchers, transportation, and daily amenities may be helpful in supporting family presence in the PICU.

Siblings of critically ill children may also experience stress during their brother’s or sister’s hospitalization related to parental absence, substitute caregiver arrangements, changes in daily routine, and lack of information. Presence at the bedside may help siblings cope with these changes. Suggestions for facilitating visits by children in pediatric and adult intensive care units include educating nurses on developmental stages and goals, preparing parents for their well child’s questions and reactions, preparing siblings for what they might see and hear through age-appropriate books and other materials, screening for infection, maintaining a child-friendly atmosphere, keeping visits brief, using appropriate language, encouraging questions, debriefing after visits, and respecting decisions not to visit. Child life specialists are a valuable resource for assisting with sibling visitation.

Based on the available evidence, the ACCM recommends that parents be allowed to visit in PICUs 24 hours per day. Siblings should be able to visit with parental approval after previsit education, and siblings of immune-compromised patients should be allowed to visit with physician approval. Despite these recommendations, a recent ethnographic study conducted in 1 North American PICU with a long-standing 24-hour open visitation policy found that parents are still often forced to relinquish their parental role because of staff attitudes and practices that diverge from the goal of family-centeredness. A survey of Italian PICUs showed that only 12% had unrestricted visiting policies, 59% did not allow continuous presence of a parent, 76% did not allow child visitors, and 32% had no waiting room. However, 48% of these units were in the process of revising their visiting policies, suggesting a readiness for change.

Family-centered rounds

The ACCM and the AAP recommend that attending physician rounds, case presentations, and discussions take place at the bedside of critically ill children in the presence of parents. During rounds, parents should be given the opportunity to ask questions, clarify information, and participate in decision making. Recent studies exploring parents’ and health professionals’ perceptions, attitudes, and preferences regarding parental presence on rounds, and the impact of parental presence on parent and health professional satisfaction, patient privacy, resident teaching, nursing practice, and length of rounds are generally supportive.

Potential benefits of family-centered rounds include increased opportunity for parents to give and receive information and to improve their understanding of their child’s condition and treatment plan. Other benefits for parents include support of their parental role, increased capacity to advocate for their child and participate in clinical decisions, increased transparency and trust of health professionals, and increased feelings of respect. Attending physicians have an increased opportunity to educate parents, role model communication skills to residents, and observe resident competencies. Residents have increased opportunity to gain understanding of family perspectives. Parental presence on rounds may also reduce the need for nurses to mediate physician-parent communication. Potential risks of family-centered rounds include increased parental anxiety and confusion because of misinterpretation of topics discussed on rounds, breaches in privacy and confidentiality, inhibition of difficult discussions that are medically relevant (eg, poor home care, medical errors, poor prognoses), increased duration of rounds, reduced teaching related to resident discomfort when making presentations and asking questions, and attending limitation of discussions to avoid exposing gaps in resident knowledge.

Most studies of parental presence during rounds are descriptive, consisting of direct observation of rounds and surveys or qualitative interviews with parents and staff. Most studies lack adequate controls, including only parents who are present during rounds, or comparing parents who self-select whether or not to be present during rounds. In general, these studies suggest that families prefer to be present on rounds, residents perceive decreased teaching when families are present, and no change in length of rounds or time spent teaching.

Using a predesign and postdesign, Kleiber and colleagues surveyed parents, nurses, and physicians at 1 PICU before implementation of a policy inviting parental presence on rounds and again 6 months after implementation of the policy. Parents were more likely to report daily physician contact with the new policy; nurses were less likely to feel caught in the middle between parents and physicians; all physicians perceived benefit to parents and enhanced trust. There was no increase in the length of rounds under the new policy.

Landry and colleagues conducted a randomized trial comparing bedside versus conference room case presentations in a PICU. Patients who had 2 consecutive morning rounds in the presence of the same resident, attending, and parent were randomized to bedside or conference room rounds on the first study day. On the second day, the alternative was performed. Parents were more satisfied with bedside presentations, felt a greater sense of confidentiality and intimacy, and more often reported being well informed about medical tests. Residents reported no difference in satisfaction or comfort level between bedside and conference room presentations, although they reported more comfort asking and being asked questions in the conference room.

Most studies of family-centered rounding have been conducted in Western societies, and some have cautioned that the findings may not be directly applicable to all cultures. In a nonrandomized prestudy and poststudy conducted in a private hospital in Pakistan, Ladak and colleagues found that parents preferred family-centered rounds over traditional rounds and that patient length of stay was reduced during the family-centered rounding period. In contrast to studies of family-centered rounding from the West, in which most parent participants are mothers, most parents in Ladak and colleagues’ study were fathers. These investigators point out that in Pakistani culture, mothers are the primary care providers, whereas male family members are the decision makers; hence, family-centered rounds may be experienced differently based on cultural beliefs and practices.

Educating staff about the underlying principles of PFCC and reconciling these principles with staff needs and expectations is an important step toward successful implementation of family-centered rounding. In addition to educating staff, educating parents about rounding procedures in the PICU has been recognized as a way to maximize benefits and reduce risks. For example, Aronson and colleagues found that parents present for rounds on the first day of PICU admission, compared with those present for rounds later in the PICU stay, were less likely to understand the plan, to feel comfortable asking questions, to want bad news delivered during rounds, and more likely to have privacy concerns and to want 1 person to convey the plan after rounds. These investigators suggest that parents may need special attention on the first PICU day, such as educational tools about the purpose and process of rounds and the option of family participation.