Frequently Asked Questions
- What is patient- and family-centered health care?
Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care.
Patient- and family-centered practitioners recognize the vital role that families play in ensuring the health and well-being of infants, children, adolescents, and family members of all ages. They acknowledge that emotional, social, and developmental support are integral components of health care. They promote the health and well-being of individuals and families and restore dignity and control to them.
Patient- and family-centered care is an approach to health care that shapes policies, programs, facility design, and staff day-to-day interactions. It leads to better health outcomes and wiser allocation of resources, and greater patient and family satisfaction.
- What are the core concepts of patient- and family-centered care?
- Respect and dignity. 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.
- Is the term family-centered, patient-centered, or patient- and family-centered care?
In the early 1990s, the Institute's work focused primarily on family-centered approaches to pediatric care. Within this framework, it was always recommended however, that as patients matured, they should be encouraged to become more involved as decision-makers in their health care. As the Institute has become more involved in adult and geriatric care in the last 8-10 years, we have felt that it was important to make the acknowledgement of the patient's role more explicit. Thus we now more commonly use the term patient- and family-centered care.
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. Individuals, who are most dependent on hospital care and the broader health care system, are also often most dependent on families and other support networks:
- The very young;
- The very old; and
- Those with chronic conditions.
Hospitals, clinics and other health care agencies that make an explicit commitment to patient- and family-centered care develop policies, programs, and practices collaboratively with patients and families that support and encourage family presence and participation.
- Does current literature reflect patient- and family-centered care as defined here?
Over the past two decades, there has been a significant increase in the literature on patient- and family-centered health care. The focus has been primarily on the partnerships between patients, families, and providers at the clinical level. There has been far less attention paid to the effect of patient and family advisors and leaders at the program and policy level on quality and safety. However, as more health care organizations engage patients and families as advisors and leaders, we have seen an increase in efforts to evaluate these collaborative endeavors.
In other fields, such as education and mental health, where family-centered care has been established for a much longer period of time, the literature does address the effects of family involvement at the intervention level as well as the policy and program level.
- Is there a difference between family-centered care and family-focused care?
While both approaches acknowledge involvement with the family as a fundamental element of care, there are key differences. In family-focused care, professionals often provide care from the position of an "expert -" assessing the patient and family, recommending a treatment or intervention and creating a plan for the family to follow. They do things to and for the patient and family, regarding the family as the "unit of intervention." Family-centered care, by contrast, 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.
- Does family-centered care have anything to do with family practice?
Family practice is a medical specialty. Although the principles of family-centered care are particularly suited to the practice of family medicine, they transcend and cross medical specialties. Health professionals in all disciplines can practice family-centered care.
- Does patient- and family-centered care take more time?
Implementing a patient- and 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.
Patients and families, who are more accustomed to being passive recipients of care, will require time and training to learn new skills and strategies to become active participants in care and decision-making. Patients and family members who will play key roles on hospital committees or task forces will need training and mentoring .
The time it takes to build these partnerships and acquire appropriate knowledge and skills will eventually be repaid several fold. When administrators, clinicians, patients and families have a shared understanding of, and respect for, what each brings to the health care experience, the stage is set for mutually beneficial relationships. 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 patient- and family-centered care cost more?
Many aspects of patient- and family-centered care do not cost more money; they simply require a change in attitude and approach. Patient- and 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.
Introducing patient- and family-centered care does entail some initial and ongoing education costs. But the costs of failed communication and trust—often quantified in terms of poor patient outcomes, wasted resources, and malpractice litigation—are much higher.
Environments that support the presence and participation of families and ensure a healing environment with privacy for patients and families may be more expensive to build. 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.
- What are strategies to overcome staff resistance?
Administrative and clinical leaders should begin by setting a positive example, modeling collaboration with patients and families. Other steps include ensuring that staff have the appropriate resources to practice patient- and family-centered care and rewarding exemplary practice.
For example, it is helpful to create forums at which staff can voice their concerns and then provide educational programs to address these concerns. Providing staff with the resources and support they need to effectively partner with patients and families usually leads to change in practice and attitudes. Programs that feature patients and families as faculty—where they recount their own experiences within the health care system—helps broaden staff perspectives and understanding. As part of these efforts, inviting staff to think about their own health care experiences and how these experiences influence their own practice assists staff in learning about patient- and family-centered care on both intellectual and emotional levels.
Another effective technique is to develop patient- and family-centered champions across the hospital or agency. This can be done by asking managers, clinicians, and support staff who are already interested in or knowledgeable about patient- and family-centered care to serve on committees and task forces with patients and families. When possible, choose staff who are already viewed as opinion leaders by their peers for these roles.
Involving staff in the process of measuring changes and improvements as well as structuring plans for dissemination and the spread of innovation, helps overcome resistance. Providing staff opportunities to share their positive experiences and engage in problem-solving discussions in areas of concern are also helpful strategies.
- How do we identify patients and families to serve in advisory roles?
Ask staff and physicians to recommend patients and families whom they believe may be effective advisors. Contact peer support groups in the community or groups that are affiliated with the clinical programs at the hospital or agency. Review satisfaction surveys for individuals who have constructive ideas to share for improving care experiences.
Once a pool of potential candidates has been identified, some organizations invite patients and families to come to an exploratory meeting about serving as advisors. Others convene an informal workgroup of patients and families as a way of building mutual understanding and trust for this collaborative process.
- What qualities should we look for in selecting patients and family members as committee members and advisors?
Individuals serving as patient or family advisors should reflect a range of experiences within the unit, hospital, or agency and should be representative of the community served.
In reviewing possible candidates for advisory positions, look for individuals who:
- Share insights and information about their experiences in ways that others can learn from them.
- Show concern for more than one issue or agenda.
- Listen well.
- Respect the perspectives of others.
- Speak comfortably and candidly in a group.
- Interact well with many different kinds of people.
- Work in partnerships with others.
- See beyond their own personal experience.