Family Centered Care

What is Family Centered Care?

Family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is based on the understanding that the family is the child’s primary source of strength and support. Further, this approach to care recognizes that the perspectives and information provided by families, children, and young adults are important in cancer care decision making.

Family-centered care is characterized by a collaborative approach to caregiving and decision-making. Each party respects the knowledge, skills, and experience that the other brings to health care encounters. The family and health care team collaboratively assess the needs and development of the treatment plan.

What are the core concepts of patient- and family-centered care?

  • Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.

  • Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.

  • Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.

  • Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

What is meant by the word "family"?

The word "family" refers to two or more persons who are related in any way—biologically, legally, or emotionally. Patients and families define their families.

In the patient- and family-centered approach, the definition of family, as well as the degree of the family's involvement in health care, is determined by the patient, provided that he or she is developmentally mature and competent to do so. The term "family-centered" is in no way intended to remove control from patients who are competent to make decisions concerning their own health care. In pediatrics, particularly with infants and young children, family members are defined by the patient's parents or guardians.

Why advance family-centered care as opposed to patient-centered care for children affected with cancer?

We believe that the term, "patient-centered care," is not sufficient to adequately describe this approach to care for several reasons. The original definition of patient-centered care as discussed in the literature in the late 1980s and early 1990s did not include the concept of patients and families as advisors and essential partners in improving care practices and systems of care.

A second reason is that the majority of patients have some connection to family or support networks and it is important for the health system to encourage the continuing link to these natural supports. Due to the profound influence of families on patients' health and well-being, families and other supportive persons should be viewed as allies in efforts to enhance safety and quality in health care.

A third reason to be explicit in the use of the term, "patient- and family-centered care," is that social isolation is a risk factor in today's society. Children affected by cancer while very dependent on hospital care and the broader health care system, are also often most dependent on families and other community support networks such as schools, churches and friends.

Childhood cancer care groups that make an explicit commitment to family-centered care develop policies, programs, and practices collaboratively with patients and families that support and encourage family presence and participation.

Does family-centered care take more time?

Implementing a family-centered approach does require an up-front investment in relationship building. Staff must have opportunities to explore how they currently interact with patients and families, to discuss and reflect on the value of collaborative approaches, and to build new knowledge and skills. For family-centered care to be effectively implemented in any healthcare setting, the staff must honestly assess how they are currently treating their patients and how this can change. Just undertaking this honest assessment is very valuable for the institution.

What is the role of parent mentoring and patient advocacy in family centered care?

Patients and families, who are more accustomed to being passive recipients of care. They require time and training to learn new skills and strategies to become active participants in care and decision-making. Effective parent mentors and patient advocacy programs plays a key role in accelerating the knowledge and skills acquisition of patients and families. These programs set the stage for mutually beneficial relationships across the cancer care continuum. With shared priorities and goals, time will most likely not be wasted on repetitive, ineffective, or counterproductive activities. The possibility of misunderstanding, dissatisfaction, and even medical error is greatly diminished.

Does family-centered care cost more?

Many aspects of family-centered care do not cost more money; they simply require a change in attitude and approach. Family-centered care improves the quality and effectiveness of communication. It is proactive, rather than reactive. As a result, many problems are prevented, and others are handled before they grow out of control.

Family-centered care does entail some initial and ongoing education costs. However, these initial design costs are quickly recouped, often in quantifiable terms, as demonstrated by lower infection rates, higher patient and staff satisfaction ratings, and improved market share. A healing environment that offers appropriate space for families is more supportive of staff and thus enhances staff satisfaction and retention.

 

Sources: American Academy of Pediatrics; Institute for Family Centered Care; U.S. Department of Health & Human Services, Health Resources and Services Administration