Whenever a family member has to undergo significant treatment in a health care institution, the relatives are usually in shock and disbelief. This is a common occurrence particularly for patients who experience chronic illnesses. However, the event is even worse off for families whose children are born with pre-existing conditions. The relatives of the child experience high levels of anxiety, discomfort, and sadness during the time of care. As a result, employing the patient-centered care approach would not be effective towards helping the patients and their relatives. Family-centered care (FCC) is an appropriate approach that takes into consideration the effect that illnesses have on the parents and significant relatives of the child. It provides healthcare workers with adequate assistance on the decision-making processes towards administering quality care to the child. Despite its profound endorsement by qualified and experienced medical care practitioners, numerous pediatric care institutions insufficiently apply the clinical practice. The following report provides an overview of FCC, its definition and core principles, current research, best practices, and implications and benefits to nursing practice.
Overview and History
During the occurrence of illnesses and various health conditions, the patient and family members may experience a traumatic effect. The research has shown that the need to provide accommodating care such that it is not only the child who is cared for but also the family at large. The pediatric care incorporated this family-centered philosophy as an effective measure of maximizing the impact and well-being of care provided to the patient. The practice involves critical collaboration between family members, nurses, and supporting staff at the hospital as a measure of evaluating, planning, and providing care (Meert, Clark, & Eggly, 2013). To comprehend the nature and significance of the practice it is important to recognize its developments in history. L’Hospital Des Enfants-Malades in Paris and Children’s Hospital of Philadelphia in the US, receive recognition as the first facilities to offer exclusive care for children in 1802 and 1855 respectively (Kuo et al., 2012). However, family members who brought the children for medical assistance were treated as visitors or attendants. In this regard, it created a separation between the child and its parents making care even more difficult.
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The 20 th Century brought about significant developments as more hospitals ensured their care provisions are exclusively for the children. However, through this process it became evident of the increasing separation trauma for inpatients. Medical institutions improved their policies in such a way to lessen the burden on the child and family alike. Instances like sibling visits, open visiting hours, rooming-in, and accompanying children to surgery were a common occurrence. The inpatient rounds that had moved to the conference rooms where the parents were waiting could now be back to the bedside. Family advocates were crucial participants in the alteration of hospital policies as they have been in various aspects in care for children (Kuo et al., 2012). The Katie Beckett Program is one of the significant influences where children with pre-existing medical conditions, chronic illnesses, and mental disorders, children can now receive the appropriate care required at the comfort of their homes (Meert, Clark, & Eggly, 2013). Further developments have taken place with the family advocates assisting Maternal and Child Health Bureau (MCHB), Children with special health care needs (CSHCN), American Academy of Pediatrics, and institute for Patient-and Family-centered Care (IPFCC) to improve the quality of care and attention provided to the family and the pediatric patient as well (Kuo et al., 2012).
Definition and Core Principles
The AAP defines family-centered care as partnership approach in the provision of care during the decision-making process. The practice is the optimal form of health care that families experience. It is for this reason that medical workers recognize it as a collaboration effort where the parents play the role of experts. The physician, nurses, and other supporting staff require the assistance of the parents to decide the care for a child (Meert, Clark, & Eggly, 2013). It is evident that though medical professionals have all the technology required to identify and treat illnesses, the parents have their expertise. They know their children better off than the charts or medical records can provide (Kuo et al., 2012). The knowledge is integral to the provision of appropriate care and ensures quick decision-making. Research on the practices and actions of FCC continues to grow by the day with the above-mentioned groups working together to improve the healthcare needs of the patients (Meert, Clark, & Eggly, 2013). Nevertheless, these organizations have considerable agreement on the core principles that guide medical practitioners in their provision of care.
One of the core principles of the FCC is information sharing whereby nurses and other health care workers exchange information with parents and relatives of the child. The MCHB recognizes this practice as an open and objective communication between two parties (Kenner, Press, & Ryan, 2015). However, it is essential that the information relayed is unbiased and complete to realize the optimal quality of care provided (Kuo et al., 2012). As is with the case with other medical divisions, parents expect complete honesty of the information relayed to the parents. It is through this provision that enable effective decision-making. Information sharing is an integral aspect of pediatric care where inclusion of the parents helps keep stress levels at a minimum.
Another important principle to consider in FCC is acknowledging the differences of one family to the next. Similar to the individual differences, families come in various shapes, sizes, and backgrounds. In this regard, medical workers and nurses alike should respect and honor the distinctions evident (Kenner, Press, & Ryan, 2015). It is essential to recognize the expertise and skills brought by the members in the relationship. The various practitioners bear the responsibility of understanding influences of such diversity including culture, economic, spiritual aspects, and values in the care processes (Kenner, Press, & Ryan, 2015). Though the nurses may not uphold similar beliefs, it is essential to demonstrate sensitivity and understanding of the impact they could have on maintaining calm and tranquility for the members.
Partnership and collaboration is another primary principle of the FCC where members recognize the importance of working together in the best interests of the child and family. The interaction between family and care providers is the foundation of FCC. This approach also brings about another crucial principle of negotiation. While the medical workers have the expertise and qualification of treating medical conditions, it is important that the ultimate decision made for care incorporate the input of the family. The development of a relationship between the health providers and the recipients should realize significant trust and willingness to negotiate (Kuo et al., 2012). Medical workers should understand that the families should receive support for the decisions they make and reassurance of the competence of the experts working to achieve a similar goal. In this practice, the desired outcomes of medical care for the child should be flexible, not absolute.
The final principle of FCC, care in the context of family and community, builds on the aforementioned practices. The health institution should develop flexible policies, systems, and practices to provide assistance while keeping the child in the context of family and community. Support becomes an integral factor of ensuring quality care to the patients (Saleeba, 2008). In this case, family members are provided the opportunity to incorporate their skills of improving care in the setting while also learning and acquiring new ones. It is evident that the child will require quality care that the parents can provide at the home or community level, hence the need to help them learn and acquire skills by reassuring their capabilities (Barry, & Edgman-Levitan, 2012). Additionally, medical workers should encourage parents to maintain confidence in this time of uncertainty through formal and informal support systems.
Current Research
Since the 1950s when FCC was born, scholars in the discipline of pediatric care have embarked on a journey of developing the practice. Extensive research has been conducted on the clinical practice to identify implementation, advocacy, and policy into two distinct settings; the inpatient and the ambulatory settings (Harrison, 2010). The former, exemplified by family-centered rounds (FCR) at the hospital, while the latter illustrated by the Medical Home concept.
The inpatient setting has been the flag bearer in the research towards improved family-centered care. It incorporates the interdisciplinary work rounds where the patient and family participate in the control of the care plan. The AAP recognize the importance of sharing information with the patient and family at the bedside. The organization recognized that the presence of family at the hospital is not enough to alleviate the stress and uncertainty of medical care (Harrison, 2010). Therefore, parents and the relevant caregivers of the child participate in discussion of appropriate approach. Research also indicated a significant decline in suffering for the child and family alike when they are together (Festini, 2014). Children were less likely to cry, experience anxiety from detachment, receive medication, and demonstrate restlessness (Saleeba, 2008). In some cases, the family presence resulted in early discharge of the patient.
The ambulatory setting is a stark contrast of the latter and does not a well-developed intervention such as FCR. However, the initiatives drawn from the inpatient setting are employed in ambulatory settings, including specialty, primary, chronic, and emergency care. The incorporation of FCC into these settings takes into consideration the Medical Home concept of care (Carman et al., 2012). In this regard, it recognizes the importance of ensuring particular standards in care for all children, including family-centered, cultural competence, accessibility, coordinated, continuous, comprehensive, and compassionate (Barry, & Edgman-Levitan, 2012). These standards of practice usually incorporate the tenets of the CSHCN hence appearing to focus on children with special needs (Harrison, 2010). The individual encounters of the ambulatory setting help develop its principles into six actions that the medical practitioner should undertake (Carman et al., 2012). These practices include spending time with the family and patient, listening intently, sensitivity to beliefs and family values, provision of important information when needed, empower family to feel like a partner in care provision, and ensure effective communication by providing language when necessary (Saleeba, 2008). These practices ensure reflect the core principles of the FCC in the implantation of care. However, research has shown that the needs of a family are not met as frequently as is the case in inpatient setting.
Best Practices
The policies and principles developed through significant research of the family-centered care approach usually help dictate the best practices that nurses and medical care practitioners should employ. The research by Carman and colleagues (2012) shows that patient and family engagement offers an effective means of ensuring efficiency, quality, and improved health outcomes for populations (Chin et al., 2012). In this regard, the patient engagement involves a high level of participation and active action in the process of care. The pediatric setting will involve parents and siblings in providing the patient with appropriate support for realizing positive health (Moeller, Carr, Seaver, Stredler-Brown, & Holzinger, 2013). This measure of practice brings about the clinical best practice of collaboration and partnership between medical workers and family members. Recent research shows the importance of mental stability and natural family bond in accelerating good health (Moeller et al., 2013). The patient is more likely to be more relaxed and under low levels of stress when the experts are taking required measures.
Social and emotional support for the family is another effective measure to employ in FCC. During the process of inpatient and ambulatory care settings, the family members usually experience trauma due to the uncertainty of the health conditions (Moeller et al., 2013). Cases such as pre-existing cardiac issues could pose significant stress on the parent who identifies every visit to the institution as a possible time when he or she may lose the child (Carman et al., 2012). In this case, the nurses engage in formal and informal support techniques where parents are can receive reassurance and positive attitude towards the healthcare provided. Parents may receive counseling as an effective measure of coping with the various illnesses that the patient is suffering from (Hodgetts, Nicholas, Zwaigenbaum, & McConnell, 2013). In this way, it improves the caregiver’s ability to attend to the child’s needs once he or she is discharged.
Implications and benefits
The implementation of FCC into pediatric care has born numerous benefits and impacts on the provision of care. While in the 19 th century practice, parents were treated as visitors, the modern clinical policies ensure that care providers show concern and respect for the parent. The nurses create a rapport with the parents and family of the patient by regularly communicating with them on the progress made during treatment (Chin et al., 2012). The measure is an effective means of ensuring an understanding of the procedures taken and reducing stress levels. The incorporation of FCC empowers the medical workers and family members to achieve optimal care for the child.
Family-centered care in the pediatric setting has been a growing clinical practice of involving parents and family in the care and support of the child. The medical workers and family work in collaboration to maximize impact of the care provided. Through adherence to the core principles of FCC, practitioners can realize the expectations of efficient and quality care. In this practice, it is evident that the philosophy enhances the care experience at the institution in so doing maximizing patient and family satisfaction. Majority of research identifies the significant improvement care provided to inpatient clients. In this regard, it calls into question the implementation of the practice for ambulatory services. The practice will effectively realize greater support from providers not only in the US, but also the global community.
References
Barry, M. J., & Edgman-Levitan, S. (2012). Shared decision making—the pinnacle of patient-centered care. New England Journal of Medicine, 366 (9), 780-781.
Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013). Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Affairs, 32 (2), 223-231.
Chin, M. H., Clarke, A. R., Nocon, R. S., Casey, A. A., Goddu, A. P., Keesecker, N. M., & Cook, S. C. (2012). A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. Journal of General Internal Medicine, 27 (8), 992-1000.
Festini, F. (2014). Family-centered care. Italian Journal of Pediatrics, 40 (1), A33.
Harrison, T. M. (2010). Family-centered pediatric nursing care: state of the science. Journal of Pediatric Nursing, 25 (5), 335-343.
Hodgetts, S., Nicholas, D., Zwaigenbaum, L., & McConnell, D. (2013). Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors. Social Science & Medicine, 96 , 138-146.
Kenner, C., Press, J., & Ryan, D. (2015). Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. Journal of Perinatology, 35 (Suppl 1), S19.
Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16 (2), 297-305.
Meert, K. L., Clark, J., & Eggly, S. (2013). Family-centered care in the pediatric intensive care unit. Pediatric Clinics of North America, 60 (3), 761.
Moeller, M. P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best practices in family-centered early intervention for children who are deaf or hard of hearing: An international consensus statement. The Journal of Deaf Studies and Deaf Education, 18 (4), 429-445.
Saleeba, A. (2008). The importance of family-centered care in pediatric nursing . Digital commons, Retrieved from http://digitalcommons.uconn.edu/cgi/viewcontent.cgi?article=1051&context=son_articles
