Impact of Pediatric Critical Care on the Family, Community, and Society

Lewis H. Romer

David G. Nichols

Jessica Mesman

Heather Woods Barthel

Matt Norvell

Melissa J. Sacco

Khaliah Johnson

Jos M. Latour

KEY POINTS

PICU care involves multiple interfaces with the child, family, and community.

The model of family-centered care includes the specific context and needs of the family in the care plan.

Shared goals and wishes for the good of the child, and the use of templated approaches for conflict resolution can energize successful building of a therapeutic alliance between the child’s family and their PICU providers.

Early planning for disposition and special needs, including counseling, teaching, and training, is required to optimally provide for care beyond the PICU.

Posttraumatic stress disorder is a widely pervasive sequel of critical care that requires early intervention and longterm follow-up.

Skillful direction of care in the terminal scenario requires the empathetic anticipation of the needs of family and staff, and well-planned bereavement follow-up care.

Individualized approaches to self-care may help providers increase effectiveness and longevity on the job.

PICU practice offers the opportunity, beyond the walls of the hospital, for patient advocacy to decrease the incidence of childhood disease and injury.

Circumstances that bring children and their families to the PICU often involve crises that summon the attention of extended families and have ripple effects throughout their communities. Care of the critically ill child therefore has a high

impact on families and entire communities. As a consequence, the PICU care team has the opportunity to make a positive impact on a wide range of individuals with diverse backgrounds and perspectives both within and outside the walls of the PICU.

The goals of this chapter include the enhancement of sensitivity, efficiency, and effectiveness in the PICU professional’s interactions with the families that they serve. The major focus points are the initial establishment of a working relationship; management of disability, death, and bereavement; provider self-care; and the PICU practitioner’s advocacy of child health and safety.

PATIENT- AND FAMILY-CENTERED CARE

The admission of a critically ill child to the PICU involves caring not only for the child, but also for the parents, siblings, grandparents, and significant others. This patient- and familycentered care is now recognized worldwide and has become standard practice in the PICU. The needs of parents may vary by country (or even within a single community) on account of ethnic, social, cultural, or personal differences. Knowledge of both specific parental needs and past parental experiences in a PICU environment is crucial for healthcare workers to set common goals for the process of guiding the parents through the intensive-care period and beyond.

The philosophy of patient- and family-centered care has recently gained reinforcement from politicians, insurance carriers, and patient advocacy groups, but practice styles and parent satisfaction still vary widely (1,2,3). The American Academy of Pediatrics considers the provision of patient- and family-centered care to be a professional responsibility of the pediatrician (1).

Family Structure and Function

Effective patient- and family-centered care requires the provider team to understand the family’s structure and level of functioning. The traditional definition of the family as a twoparent unit in which the mother is the caretaker of the children and the household and the father is the breadwinner has given way to a wide array of family structures.

These changing and diverse aspects of family life increase the need for healthcare workers to understand the family structure of each child admitted to a PICU. Nursing and medical personnel usually initiate this assessment, which is often carried further by social workers, play therapists, and members of the pastoral care team. The initial family assessment includes current marital relationship(s), parental roles, other important persons (e.g., grandparent, clergy), communication and coping patterns, religious background, cultural values, and factors that identify this child as unique (e.g., only child, only son, only daughter, youngest, or eldest). Knowledge of a family’s coping style and modes of function provides essential insights for multidisciplinary, psychosocial intervention for the child and family throughout the hospital admission period (4,5). Each family’s values, norms, behaviors, and attitudes will heavily influence parental coping with critical illness regardless of the family structure.

Dimensions of Patient- and Family-Centered Care

The PICU care team should manage patient- and familycentered care in a structured manner, while considering the dimensions that affect care. There are six dimensions of comprehensive family-centered care related to the roles of the professionals and the parents (Table 2.1) (6). Similarly, the Institute for Patient- and Family-Centered Care promotes nine tenets of patient- and family-centered care (http://www.ipfcc.org), which can be grouped into these dimensions.

Respect for the child and family is an essential goal of

patient- and family-centered care. This dimension addresses equity in healthcare. Racial and ethnic disparities in PICU admissions and outcomes of various critical illnesses have been well documented (7). While the causes of disparities may be multifactorial, implicit or explicit bias in care is considered an avoidable cause and unethical. Avoidable inequalities of care are termed health inequities, the elimination of which is a declared goal of the World Health Organization 2009 World Health Assembly. Disparities in access to care and quality of service may arise from differences in insurance coverage, economic means, language and cultural barriers, geography, or internecine conflict. PICUs should regularly measure access, care processes, and outcomes by demographic group and socioeconomic status. If differences are found, the care team should search for and eliminate all avoidable causes of inequity as part of routine quality improvement in the PICU.

Providing information and education to parents is a dimension that builds a basis for collaboration in the care of the critically ill child. Effective and understandable communication between parents and professionals decreases parental stress and anxiety and fosters trust (see below).

Coordination of care in a PICU entails collaboration with other departments, such as the emergency room and the pediatric wards. A PICU is a transitional unit, with frequent admissions and discharges from and to other locations within the medical center. The PICU team must carefully coordinate transfers to precisely address multiple facets of care, such as the basic daily care plan, diagnostic tests, procedures, and consultations (8). For parents, the continuity of these processes becomes visible only when communications from the professionals are timely, accurate, and linked to a schedule.

TABLE 2.1 SIX DIMENSIONS OF FAMILY-CENTERED CARE

Respect for the child and family	Respect for multicultural and diversity issues, such as race, ethnicity, rituals, norms, values, beliefs, and socioeconomics
Information and education	Communication and teaching in an understandable language
Coordination of care	Timely and accurate coordination of care within a single unit and between units
Physical support	Prevention of suffering from pain and discomfort
Emotional support	Support that facilitates the family’s emotional and spiritual needs
Involvement of parents	An open and flexible organization that facilitates parental participation in decision making and care based on the needs of child and family

Parents are concerned about pain and the provision of comfort measures for their child. Incomplete communication about painful procedures or pain control may increase parental stress. The explanation and transparent use of validated pain and comfort assessment instruments can improve the recovery of the critically ill child and the well-being of the parent (9). Child life therapists are effective allies in this effort and can also teach nonpharmacologic pain-management strategies to children and parents.

Emotional support to parents hinges upon recognition of the traumatic stress symptoms that are common among parents in the PICU (10). Parent educational and support programs may be valuable in the PICU for both short- and long-term improvement of parents’ mental health. Although identification of parental stress and coping strategies in the PICU has been studied extensively, effective interventions to reduce stress are limited in scope. An effective example is the Creating Opportunities for Parent Empowerment (COPE) program, which uses educational media about the emotions and behaviors of sick children to improve the psychosocial outcomes of critically ill children and their mothers (11,12). This educational-behavioral intervention may decrease the incidence of posttraumatic stress disorder (PTSD) among mothers 1 year after PICU admission of their child.

The involvement of parents in PICU care is widely incorporated in concepts of best practice. Several policies may foster parental involvement, including open visiting hours, parental participation in decision making, and parental presence during invasive procedures, medical rounds, and resuscitation (13,14). The American Academy of Critical Care Medicine has developed evidence-based clinical practice guidelines for the support of patients and their families during ICU care that address each of these considerations (15). Visiting policies for the PICU vary worldwide—units in the United States and northern Europe trend toward more open policies, whereas other parts of the world have more restrictions (16,17). The physical layout of the PICU has a substantial impact on this issue, as privacy and parental presence on rounds are more easily accommodated in units with single-patient rooms. Advocates for parental involvement in medical rounds have debunked several myths regarding this practice (18). Studies indicating that parental presence during PICU rounds does not affect the length or teaching quality of the rounds support this practice (19). Additionally, a survey study showed that only 5% of the 98 parents that were interviewed regarding parent involvement in medical rounds had concerns about compromised privacy (20).

Resuscitations present challenging circumstances, and the support and incorporation of parental presence at the bedside during resuscitation remains a controversial issue (21,22). The majority of the relevant literature does show beneficial outcomes that have led to positive statements on family presence during resuscitation from both American and European critical care practice associations (15

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