From the concept of Medical Home to Family-centered care
Historically, family-centered care has evolved from the concept of Medical Home, which is not a building, house, or hospital, but rather an approach to providing comprehensive primary care. A Medical home is defined as a primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. In a medical home, a pediatric clinician works in partnership with the family/patient to assure that all of the medical and non-medical needs of the patient are met [13]. Through this partnership, the pediatric clinician can help the family/patient access and coordinate specialty care, educational services, out-of-home care, family support, and other public and private community services that are important to the overall health of the child/youth and family. As a matter of fact, for many years family-centered care had the characteristic of an effective medical home [12] and much of the early work focused on hospitals. For instance, as a multitude of studies progressively emphasized the impact of separating hospitalized children from their families, many institutions adopted policies that welcomed family members to be with their child around the clock and also encouraged their presence during medical procedures.
In Europe, such new concepts and policies gradually became accepted, although only few research studies and extensive reports, frequently of humanistic rather than scientific type, were produced on the topic. Conversely, in the Anglo-Saxon Countries family-center care has long been a matter of public attention and scientific investigation. In the New World, family-centered care was given further bust by consumer-led movements of the 1960s and 1970s and by professionals in education, health, and child development, which prompted US Federal legislation of the late 1980s and 1990s, much of it targeted at children with special needs, to provide additional validation of the importance of family-centered principles [13].
Family-centered care concepts merging in family pediatrics
Nowadays, attention for family-centered care continues to grow in economically advantaged Countries and its momentum is further supported by a growing body of research and by prestigious organizations. For instance, the American Academy of Pediatrics (AAP) has incorporated some of the principles of family-centered care into its policy statements [14] and the US Institute of Medicine in its 2001 report Crossing the Quality Chasm: A New Health System for the 21st Century, emphasized the need to ensure the involvement of patients in their own health care decisions, to better inform patients of treatment options, and to improve patients' and families' access to information [17].
The embedding of family-centered care concepts in family-oriented care in pediatrics has produced a positive new approach to health care which shapes health care policies, programs, facility design, and day-to-day interactions among patients, families, physicians, and other health care professionals [18]. However, the practice of family-centered care by health care professionals could be productive only if the community of health care professionals recognized the vital role that families play in ensuring the health and well-being of children and family members of all ages. In that view, it is critical that health practitioners acknowledge that emotional, social, and developmental support are integral components of health care. Furthermore, each child and family's innate strengths should be respected and the health care experience must be considered as an opportunity to build on these strengths and support families in their care-giving and decision-making roles [19].
Core principles of family-centered care
Under many aspects, family-centered care can be considered as an extension of patient-focused care, a concept that acquired general attention in the early 1990s [8]. The fundamental premise of patient-focused care was to abandon the traditional approach in which care was based on what worked well from an organizational perspective, promoting the concept that delivery of care should be based on the needs of the patient. Family-centered care simply takes patient-focused care to the next step and expands the concern to include in the loop of care those persons who are important in a patient's life [13].
It is now a consolidated convincement in pediatrics that acceptance and correct practice of family-centered approaches will produce better health outcomes and wiser allocation of resources as well as greater patient and family satisfaction. However, much confusion remains over what family-centered critical care actually is [8]. Many clinicians incorrectly associate family-centered care with open visiting. This misconception originates, in part, from the common implementation of policies for flexible visiting hours in units that are attempting to provide more family-oriented care. Given that family-centered care is a philosophical approach to care that recognizes the needs of patients' family members as well as the important role that family members play during a patient's illness, it is therefore not defined by a singular intervention. In fact, no single intervention and not even a group of interventions will ensure a family-focused environment. For instance, it would be wrong to believe that simply allowing a family member to be at a patient's bedside 24 hours a day would mean that the staff met the family's needs. In fact, having a family member present in a situation in which staff members are not equipped to meet the family's needs could ultimately have unfavorable consequences. Family members may be more stressed if they feel ignored by a nurse, neglected by physicians or are made to believe that they are somehow in the way or interfering with the patient's care [8].
An important step toward the establishing of family-centered care concepts has been made in 2003 by the American Academy of Pediatrics, which issued a policy statement indicating nine key principles, that should guide the practice of family-centered care in pediatrics (Appendix 2). The AAP statement indicates that family-centered care is grounded in collaboration among patients, families, physicians, nurses, and other professionals for the planning, delivery, and evaluation of health care as well as in the education of health care professionals. This partnership proposed by the AAP statement implies that practice of family-centered care in pediatrics should pursue a number of unavoidable tasks, including the support of youth as they transition to adulthood, acknowledgment of family as the constant in a child's life and the honor of cultural diversity and family traditions. Such tasks are reported in Appendix 3.
The 2003 AAP statement has been undoubtedly a significant step toward the correct management of the needs of hospitalized children. However, in spite of the widespread attention and growing knowledge regarding family-centered care, there is still confusion over this concept and its practice may cause frustrations for many staff members who think that family-centered care may not be in the best interest of either patients or health personnel. In general, adult patients who are able should always be asked to what extent they want their family to participate in care. Family's involvement is presented as a choice and lets patients know that family members are welcome should the patients so decide [8]. Patients may, in fact, not want any visitors or any information given out to family members. Of course, in pediatrics the practice of these concepts is facilitated by the nature of the patients and their dependence by families or guardians. However, it is also important that care for the needs of children and family's involvement are not misrepresented as opportunities for the staff to alleviate their job or to charge families with duties or responsibilities that do not pertain to them.
On the other hand it is equally important and helpful for staff members to see that the essence of family-centered care is consistent with patient-centered care. To such regard, a great concern often raised by staff members is that family-centered care demands that staff relinquish all structures within the unit that allow some form of order in this otherwise chaotic environment. This concern should be considered absolutely not the case. For example, during a critical illness, patients' families will benefit from guidance and structure to help them deal with the situation. It is crucial that staff members fully understand what family-centered care is and is not, to avoid any room for disruptive discussions, as well as they must be reassured by knowing that boundaries and limitations are still in place and that the expertise of staff members remains a critical factor in ensuring the success of family-centered care [8, 13].
The important concept that must be reiteratively stressed is that the needs of the children are always the priority, even in a family-centered environment. Research indicates that it is important to the hospitalized child's family members to be assured that he/she is receiving the best possible care [20]. Interventions such as having family members present during procedures and resuscitations help to reassure family members that everything possible is being done for the patient [21]. Understanding and meeting children's needs in hospitals should always be the priority for both the patient's family and health care providers.
Finally, family-centered way of practice requires that outdated rules and regulations that were imposed for the benefit of the organization rather than children or their families should be reviewed and reconsidered. Structures and policies that provide for the support and safety of patients and their family members are generally welcomed by family members and help staff members to carry out their responsibilities in a timely and efficient manner [8].
Importance of Cultural Diversity and Cultural Competence for family-centered care in the context of socioeconomic, demographic and ethnic changes
Cultural Diversity is generally defined by coexistence of numerous distinct ethnic, racial, religious, or cultural groups within one social unit, organization, or population. As a source of exchange, innovation and creativity, cultural diversity is as necessary for humankind as biodiversity is for nature. In this sense, it is the common heritage of humanity and should be recognized and affirmed for the benefit of present and future generations. This approach to cultural diversity should be taken by economically advantaged Countries in confronting socioeconomic, demographic and ethnical changes within their civil societies. In our increasingly diverse societies, Cultural Diversity is essential to ensure harmonious interaction among people and groups with plural, varied and dynamic cultural identities as well as their willingness to live together [22–24].
Cultural competence is defined as a set of values, behaviors, attitudes, and practices within a system, organization, program or among individuals which enables them to work effectively cross culturally (Appendix 4). Further, it refers to the capability to respect the beliefs, language, inter-personal styles and behaviors of individuals and families receiving services, as well as staff who are providing such services. At a systems, organizational, or program level, cultural competence requires a comprehensive and coordinated plan that includes interventions at all the levels from policy-making to the individual, and is a dynamic, ongoing, process that requires a long-term commitment. An important component of cultural competence is linguistic competence, the capacity of an organization and its personnel to communicate effectively, and convey information in a manner that is easily understood by diverse audiences including persons of limited local language proficiency, those who are not literate or have low literacy skills, and individuals with disabilities.
Cultural Competence and Cultural Diversity are profoundly interconnected to the concept and practice of family-centered care. In fact, Cultural Competence is necessary in providing care to culturally diverse families. Family-centered care values the strengths, cultures, traditions and expertise that everyone brings to a respectful family/professional partnership, where families feel they can be decision makers with providers at different levels, in the care of their own children and as advocates for systems and policies supportive of children and youth with special health care needs. It requires culturally competent attitudes and practices in order to develop and cultivate those partnerships and to have the knowledge and skills that will enable the health care practitioners to be "family-centered" with the many diverse families that exist and they interact with. Various and untraditional strategies can also be adopted to support health system in providing proper care to sick children, including those who are hospitalized. For instance, building relationships with community cultural brokers, is an approach that can help health care institutions and health care professionals in understanding rules and behaviors of different communities [25–29].
In brief, knowledge of cultural diversity is vital at all levels of health system and knowledge about cultures and their impact on interaction with health care is essential for health care professionals, whether they are practicing in a clinical setting, education, research or administration. Knowledge and skills related to the important concept of cultural diversity and acquaintance with cultural competence are factors that must be considered strategic to strengthen and broaden health care delivery systems.