FAMILY-CENTERED CARE

Family-centered care (FCC) has only recently emerged in the healthcare field since the 1950s, but it is one of the most important movements in pediatric care for the 21st century. The word family refers to 2 or more persons who are related in anyway-biologically, legally, or emotionally.1 In the pediatric population, parents or guardians determine who make up the patients' family. Family structures vary dramatically and can include blended families, single parent households, adoptive homes, same-sex couples, and transgendered models that include extended family members.2

Family-centered care is a care delivery model that incorporates a partnership between families and providers when caring for the patient. Some common components of FCC include respect, collaboration, participation, and information sharing among family members. Respect and dignity are provided for patients and families by honoring personal and cultural beliefs and incorporating these beliefs into healthcare choices. Healthcare providers collaborate with families and patients for the delivery of care as well as facility wide changes and improvements. Patients and families are encouraged to play an active role in decision making and delivery of care. Healthcare providers open communication to families about treatments and plans of care so that active involvement is facilitated.2,3 Parent involvement in care, respect for culture, and recognition of family importance are all factors that are important in the delivery of FCC. Family-centered care can be applied to all patient settings and includes patient involvement along with family involvement. The very young, very old, and all ages can be included in the collaboration of care.

Family-centered care within the pediatric intensive care unit (PICU) is largely focused on parental involvement and parental presence at the bedside. Parents assume the role of advocates for their children, educators to clinicians, and support to other families. Sibling visitation is slowly evolving to include more interaction and education that includes the entire family in the care process.

VISITATION POLICIES

Since the 1800s, visitation polices within the hospital settings have been restrictive. The first children's hospitals were opened in the 1850s to treat children in cleaner conditions than those found at home. Visitation was heavily restricted and key goals of the hospital were related to social reform instead of patient care. During the early 1990s, hospitals became more sanitary environments that were no longer considered places of death. With the emergence of neonatal and pediatric intensive care units, further restrictions on visitation policies were enforced as concerns for communicable disease emerged.

Risk of infection, confidentiality, and crowd control were all factors that have contributed to the slow incorporation of FCC in the pediatric setting. As recently as 10 years ago, more than half of pediatric hospitals surveyed still restricted visitation to short time frames several times a day.4 Although FCC was initially more focused on the ability of family presence at bedside, the shift has now changed to include family involvement, which can include additional roles such as patient advocate, peer support, hospital committees, and educational opportunities.5

Many factors have contributed to the slow emergence of FCC in PICUs. Although involving a child's family within care may seem like common practice to recent nurse graduates, more experienced nurses often have difficulty accepting the changes associated with FCC. The traditional PICU environment is not a warm and fuzzy place that encourages visitation or parental involvement. Pediatric intensive care units are often busy, crowded, over stimulating, short staffed, procedure oriented, and hectic. Until recently, parents were often asked to leave the room or unit during procedures, report, and rounds. Visits for older siblings were limited to short periods of time, if allowed at all. Concerns over infections caused by sibling visitation have been evaluated but require further research. Communicable diseases often found in children could possibly be transmitted to the sibling in the hospital. The stress of viewing a sibling who is ill maybe considered traumatic and further cause of emotional harm. Furthermore, a child that is in demise or dying may add more trauma to an emotionally charged situation that is already difficult for parents without adding more stress on the young siblings. Most institutions do not provide sleeping areas in the room or on hospital property for parents to sleep at night, although this is an emerging trend across the United States.6

LITERATURE SUPPORT OF VISITATIONS

The issue of FCC within the PICU leads to several concerns that are considered to be inaccurate. Sibling visitation, parental and patient stress, confidentiality, and time constraints are all concerns that nurses and healthcare professionals state as potential barriers to family centered care. Family members benefit when allowed to take part in care. Nurses often experience stress when working in PICUs. One frequently stated concern was that open visitations take additional time and make provision of patient care more difficult.7,8 Poor communication between physicians and families may add additional stress for nurses who do not have enough information to answer multiple questions.

The American College of Critical Care Medicine Taskforce has several recommendations regarding visitation in pediatric and neonatal intensive care units.9 Those recommendations included, but were not limited to, (a) parents shall be allowed open visitation 24 hours a day; (b) siblings were allowed to visit with parental approval after previsit education to determine age appropriate information and behaviors; and (c) siblings of immunocompromised patients may be allowed to visit with physician approval. These recommendations are based on what is in the best interest of the patient and incorporate family and cultural values into care.

A visitation program for the neonatal intensive care unit developed at the University of Iowa Hospital and Clinics outlines specific interventions that have supported incorporating sibling visitation in a positive manner that allows bonding and interaction. Parents were given the option to decide if sibling visitation was appropriate. The nurses were involved in the emotional preparation of the child so that the experience was positive rather than traumatizing. Age-appropriate explanations were given and the children were asked to wear gowns and masks during visitation. Positive feedback received from families was related to the support of family and support of nursing staff.

Parents and PICU nurses often have different opinions about what is stressful to families. Parents reported the highest level of stress from role alteration.10,11 Other causes of stress included alarms, communication, procedures, and the child's appearance. Many of these stressors decrease over time as parents adjust to the unit and environment. Stressors for healthy children in the family included changes in caregivers and parental behavior. Family members report lower levels of anxiety when open visitations were in place and were more satisfied with care when open communication occurred. Many needs identified by parents were psychological in nature and included frequent visitation, good staff communication, and feeling involved with care. The transition of family at bedside will continue to develop slowly in the PICU as it becomes the standard of care. Pediatric intensive care units can be restructured to private rooms that enhance privacy and family presence. Education and communication play a large part in incorporation of FCC in to PICUs. Interventions such as providing parent meal vouchers, transportation, sleeping arrangements, and daily amenities are helpful in improving hospitality to visiting families. Encouraging parental involvement in care while evaluating coping needs are important roles of the PICU nurse. Sibling preparations prior to visits with hospitalized children are needed. Prescreening for signs of communicable illnesses is common practice in many PICUs. Evaluation of psychological and emotional preparation for the visit should be considered with young children. Encouraging hand washing and universal precautions in all visitors is useful to prevent the spread of infection.

Staff education in preparation for open visitation of a unit is helpful to improve interpersonal skills that are needed for extensive family interactions. Reinforcing positive aspects of family involvement can help make staff more open to changes. Review of developmental and coping mechanism of healthy children can make visitation less difficult for nurses who are uncomfortable with possible reactions of siblings.

Both patients and family members benefit from a FCC model while in the PICU. Multiple research projects reinforce that parent and patient stress are decreased when parents are allowed to be involved with care. Coping and comfort in parenting roles are enhanced when parents have an active part in decision making and activities of care. Healthy sibling interaction was generally promoted when adequately prepared and age appropriate.

IMPLICATIONS-ADDRESSING NEEDS OF THE PEDIATRIC FAMILY MEMBERS

Computer and technology systems have provided a means for the public to receive information immediately, thus producing a more informed society and family members who are more knowledgeable to ask better questions and elicit more information. Because the pediatric units are highly technical environments, nurses and families may be more readily aware of the need to provide information before entering the PICU. Pediatric nurses must maintain competencies, continuing education credits for licensure, Pediatric Advanced Life Support and Neonatal Life Support certifications, as well as certification to operate and interpret data from specific equipment in the PICU.

Most units are relaxing visiting times and allowing parents or significant others to remain in the room as much as possible. Frequent visitations have become more the norm in many of the PICUS so that the ill child can remain attached to the family. During the busy day of the PICU, nurses may not be attuned to the fact that family members need to feel that it is all right to leave the hospital for a while. Reassuring the family members that they can be called if needed may be one way of assisting with this issue. Listening to the family with empathy may be one method of making the family comfortable with the hospital staff. The idea of talking with the same nurse is problematic, as nurses tend to work 12-hour shifts, earn days off, or be assigned to other patients to accommodate the workflow and integrity of the unit. A good response to these changes might be for the nurse to introduce the newly assigned nurse to the family members. Providing snacks in the waiting room may assist with the long-time notion that hospital food is not very appetizing and also provide food for those who do not have extra money for snacks in this time of economical recession. Although hospital food may not seem as desirable as dining at home or at a restaurant, many may need this break for a few minutes of time to themselves.

Family members may also address feelings such as anger or guilt because they think they should have performed actions that would have avoided the illness, accident, or cause of their child's admission. Pediatric nurses can be attentive to such negative feelings and offer support by listening to or seeking outside assistance from hospital chaplains, pastors, or counselors. Literature may be provided regarding these services to the family members so they have this knowledge. Support can be offered by discussing the environment of the unit and methods to communicate if the child is unable to communicate because of the illness or mechanical ventilation. When children are critically ill, family members may wish to discuss the possibility of demise or death. Because family members' perception of bereavement experiences around the death could affect positive bereavement outcomes, early detection of unmet needs by nursing staff is crucial. Families facing death of a pediatric child are at potential risk for physical and psychological health problems. Although it is unrealistic to address every aspect of family members' need when demise occurs, stressors associated with bereavement experiences of a child may be reduced if appropriate and timely interventions are provided. Family members require opportunities to be present at the time of death if that should occur.

Given the complexity of variables surrounding FCC and the child's illness, nurses may be in a place to identify needs of the both the family and the patient.12 In FCC, family members will become involved in an egalitarian interaction that expands giving and receiving by both family members and pediatric nurses.

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