Artificial Intelligence and Radiology: What are the ethical challenges for a healthcare administrator’.

Problem Statement

Family-centered care (‘FCC’) has the gold standard model of care from which to structure parent’s involvement in their child’s plan for health (Institute of Medicine, 2001). However, despite the strengths of the model, there are reports of lack of implementation. A lack of skill and knowledge on FCC is an obstacle to the implementation. Power struggles, role stress, and negotiation failure (Corlett & Twycross, 2006) are the three areas which involved attention as barriers to the effective operation of FCC (Lee, 2014). Specifically, power struggles between parents, nurses and other members of the healthcare team have noted in the literature (Perry, 2015). Role stress has also identified in the literature as adversely affecting the quality of FCC. Enke, Hausmann, Miedaner, Roth, and Woopen (2017) found that parents often, quite naturally, struggle with the emotional aspects of dealing with a child who is seriously ill. Role stress manifests in communication stress and difficulties relating to empathy. Regarding negotiation failure, studies have found that parents have often wanted to be involved in the care plan of their children but lack of communication and limited negotiation with nurses meant that this did not always occur (Corlett &Twycross, 2006, p. 1308).

Family-Centered Care vs. Patient-Centered Care

The IOM defined Patient-Centered Care as: "Care that is respectful of and responsive to individual patient preferences, needs, and values" and that ensures "that patient values guide all clinical decisions." (Institute of Medicine, 2001). Family-Centered Care (FCC) is defined as the professional support to the child and his family, through participation, engagement, and sharing, in a contest of empowerment and negotiation (Ftini, 2014, p. A33). Family-Centered Care focuses on parent empowerment and advocacy for the child and his/her life (Festini, 2014). Both care approaches aim to primarily improve and upgrade the health outcomes in collaboration with the integral health partners that includes patient and his/her family (Institute, F. P. & Family-Centered Care, 2012).

Particularly in the case of children between 0-6 years old, the critical healthcare assistance model of FCC is essential. FCC requires coordination and cooperation among all treatment team members including social workers, educational partners and healthcare professionals such as nurses because there are communication issues with a young child (Rebollo et al., 2016). Patient-centered care involves two-way communication (Reynolds, 2009 & Kuo, 2012s). In patient-centered care, the health practitioner makes an extra effort to identify the distinct needs of the patient and works in partnership with other involved parties including family members and friends of the patient (Cvengros & Christensen, 2007). The findings of the study which was conducted at the University of Iowa suggested that patients are satisfied with the care they receive if their care is aligned with their expectations. Most of the patients are satisfied with PCC plans which triggered a decrease in duration of stay and promotion of patient-centered culture. On the other hand, family-centered care system encourages parent and family of the child to put their input into child care plan (Smith, Swallow & Coyne, 2015). In contrast to PCC which might be a better choice for elderly, FCC is the choice for child care. In FCC, the family’s role is integral and substitute the patient’s role. The healthcare professionals’ roles are different too. In PCC, they are the ones making the treatment plans but in FCC, they seek the patient’s family’s input. (Rosenberg, et al, 2014)

HISTORY

The history of family-centered care is not a new phenomenon. Concerns related to the health of children and risk recognized the influence to change the perspective on health and well-being of children (Merrigan, 2016). World War II proved that social expectations and the healthcare approach towards patients, especially children were completely asynchronous. (Jolley and Shields, 2009). Antibiotics were not readily available, and the health professionals were in the ongoing fight against infections and diseases. At this time, the health professionals discouraged the idea of involving families while dealing with patients, only advising them what to do. Up to many years, the myth continued that parents have an adverse effect while pursuing treatment for their children (Smith, Swallow, & Coyne, 2015).

According to the studies, there were certain limitations back then. The parents can visit their children sometimes for an all-day out of seven hospitalized days (MacKean, Thurston & Scott, 2005). Until 1950s, hospitals in the UK did not allow parents to visit their hospitalized children. They believed children behaved better and parents only unsettle the children and disturb hospital routines. A psychoanalyst named James Robertson disagreed with this approach and proved the adverse mental health effects on children by producing a short film, in 1952, from a two-year-old patient, separated from her parents. The child looked ‘fine’, but she had internalized her distress and gave in to despair. (Hendrick, 2003)

The results determined that there were adverse effects on the mental health of children when they were kept separated from their parents for a more extended period. James Robertson introduced the concept of including parents in the care of children to recover from health problems. The scholar presented many parts of evidence proving that long-term separation of children from their parents can cause adverse effects on their mental health. His work helped the care system providers to implement Family-Centered Care system in children hospitals and units (Monaliza, Kalia & Ghai, 2015)

GLOBAL POSITION OF FCC:

Family-Centered Care has become a widely recognized term across the globe mostly among service care providers. In this regard, World Health Organization developed a framework in collaboration with UNICEF, World bank, UHC2030 and significant other global organizations to pass a declaration regarding family-centered health care systems development and implementation internationally. It also declared that universal systems of healthcare exposure such as patient-centered and family-centered care in under-developed regions of Africa and Asia. (WHO, Urban Health, World Health Organization, 2017). These systems are adopted by Japan, Canada and the major emerging world economies, Brazil, Russia, India, China and South Africa. In the United States and other significant countries, this system is currently well recognized. Moreover, family-centered care is applied across the globe and perceived as a positive model of healthcare provision by people of different cultures all over the world. Studies regarding the attitudes of patients, parents and healthcare providers from three different continents revealed that family centeredness was the successful idea to implement in hospitals and family interaction with nurses and physicians gained positive health outcomes for children as patients (Feeg et al., 2016).

The significance of roles in FCC

FCC encompasses all the dimensions regarding the role that family members can play in influencing the health outcomes of a patient. The concept is two-way or operates under mutual interaction as the healthcare provider can also get insights into the patient's medical history, social practices, diet, and emotional state among other factors that may help to improve the care of the patient with the help of the family (Dokken et al., 2015). The role of the physician and that of the nurse differs significantly in FCC and pediatric oncology. The physician is mostly involved in the provision of information regarding treatment of the patient. The physician is actively engaged in FCC through interactions with family members to provide them with information about the patient's diagnosis and the provided treatment. Additionally, they elicit responses from family members regarding the patient's medical history, social practices, and emotional state among other factors (Jewel, 2014). The role of the nurse in FCC is, however, broader as the nurse is expected to be in regular contact with both the patient and their family members. The nurse provides emotional, physical and health support to the patient and their family members. In doing so, the nurse may have to communicate with family members, ask about any social, physical, and emotional issues associated with the patient to identify their recovery process (Jewel, 2014).

Needs of Family-Centered Care in Pediatric Oncology (FCC-PO)

The needs of family-centered care plan include effective communication, and critical characteristics include coordination with doctors and practitioners. Nurses can help to establish positive relations with them by providing appropriate knowledge according to their developmental stage. Nurses can look for opportunities to talk more comfort with affected child and family. Since oncology is a complicated course of a disease and has many types, childhood cancer patients need some special care (Coyne, 2015). Although FCC has had a long history, there are still issues in its implementation throughout the care facilities. The main issue is the clarity of everybody’s role in the system and the required education for families and healthcare professionals (MacKay & Gregory, 2011).

There are several studies that have focused on some of the barriers towards the implementation of FCC. Stress and its management have been becoming a crucial part of the daily practice of nurses. Long work hours, shortage of staff and high stress are part of the barriers. Currently, unavailability of data on such topic around the care facilities is an issue to adopt the FCC approach altogether (Coyne, 2015; Alderfer, 2017 & Berger et al., 2015). FCC implementation in hospitals and especially oncology wards for children need dedicated and detailed education for the staff which requires hours of manpower and a relaxed environment which the above-mentioned barriers make it very difficult.

Studies, to date, show that most of the children in US health care system do not receive family-centered care (Mittal et al, 2010). Family education, a better relationship with practitioners, inadequate insurance coverage and clear roles for everybody in the system could help with a more successful application of FCC in pediatric oncology. Institutions and authorities should look carefully to integrate principles along with high level of planning and design to make the system better. There should be the urgency to apply this care approach in the hospitals and care facilities across the cancer centers for children across the US.

Research Purpose

The purpose of the study is to explore the potential barriers to implementing Family-Centered Care (FCC) in pediatric oncology units around the United States of America. What can be done to resolve the obstacles and provide a better care to all children with cancer and how their families can help in the implementation and carrying this purpose. The study relies on secondary research, the population of interest is pediatric oncology patients as well as their families, nurses and broader stakeholders. The intervention of interest is family-centered care.

Search terms will include "family-centered care," "pediatric care," "oncology," and "nursing." Inclusion and exclusion criteria will be applied.

CHAPTER NO. 2 LITERATURE REVIEW

The main aspect of this research is to understand the barriers for nurses to provide the Family-Centered Care in the United States of America for pediatric oncology patients. There are several studies that have focused on some of the barriers that can create hurdles in the implementation of Family-Centered Care. In this paper, such barriers will be discussed, and the way to overcome those barriers in pediatric oncology nursing.

Cancer in Children

The cancer incidence has increased in children (WHO, 2017). This increase is estimated to be 0.6% per year in the United States and the most common type is leukemia (American Cancer Society, 2016). Due to treatment advances, there are improvements in prognosis (Hudson, Link & Simone, 2014) and an increase in survival (Center for Disease Control, 2017). According to the American Cancer Society, the survival rate in a 5-year period has increased from 58% in mid- 1970s to 80% in 2017. These changes have caused changes in treatment and nursing care. In children between 1 to 14 years old, cancer is the second leading cause of death after accidents. In 2017 almost 1200 children under 15 years of age were estimated to die of cancer (American Cancer Society, 2016).

The children cancers are usually different from the ones affecting adults. They are not caused by environmental factors and only a few of them are inherited through damaged DNA from parents (American Cancer Society, 2016). The nursing profession holds the pride of being holistic and respected throughout the world. The value of the nursing profession in society is primarily based on the importance of maintaining good health. Family-centered care approach is a holistic step in the healthcare profession (Munday & Wilson, 2017). Listening and understanding the wants and needs of a family are essential in taking care of the patients and address them as the priority (Pamela, Jean Ann, & Ann, 2010). In FCC system, nurses are highly involved in the care of the patient and understanding other ways in which recovery can be enhanced because they are engaged in direct interaction with the patient’s family members and friends (Regan et al., 2006).

The FCC system

Family-Centered Care system is a broad term. There are many studies focusing on it in the past few decades. (Peterson, Cohen & Parsons, 2004). During the past few years, fields like medicine, nursing, social work, and allied sciences have gained vital importance in individual studies of patients and healthcare plan systems. FCC is a term coined for an innovative approach to the planning and evaluation of healthcare system regarding performance. It provides mutual beneficial ground for healthcare service providers. In their study, Wade and Halligan argued that there are some core responsibilities of the system that should be followed such as dignity and respect. The healthcare practitioner should address the concerns of the family regarding the services provided. While planning the prospect of care system and designing its implementation, the knowledge of belief, values and own background of the patient should obtain on the prior basis (Wade & Halligan, 2004).

The researchers further concluded that sharing this information with doctors and families of the patient can prompt practitioners to communicate with the family to provide timely information accurately. In this regard, both can take an active part in treatment and care related decisions. This collaboration is only possible when administration plays the active role in consultation with patients’ families (Dokken, Parent & Ahmann, 2015).

The nursing system is a traditional model of care that required restriction of families and patients. In practice, patients and families were at stake to act upon the advice of healthcare providers. Instead of that traditional practice, patients and their families took active part while making decisions in the family-centered care system. This system promotes the collaboration between healthcare professionals and families positively to ensure the healing process. (Institute for Family-Centered Care, 2010).

Family-centered care and similar models are the focus of numerous studies in the past decade, especially in the field of pediatric oncology nursing (Kästel, Enskär, & Björk, 2011). There is an emphasis on how beneficial FCC is in pediatric oncology wards (Dix et al., 2009). Kilicarslan-Toruner and others investigated the methods of seeking information and making decisions of the parents of the pediatric oncology patients and found out that the parents are most interested to know about their child’s illness, treatment, and the way he or she is cared for (Kilicarslan-Toruner et al., 2013). In another study conducted on immigrant parents’ opinions about FCC and its benefits, most parents were happy with the service they have received, but a few issues such as inconsistent quality of care and bad staff behaviors were also reported (Watt et al., 2011).

Since in the hospitals and oncology departments of hospitals, several patients are present at a time, families of these patients can play a critical role by encircling the support for each other. Families can also help others to cope with this distress condition and get them to understand the process of their child’s recovery (Dokken & Ahmann, 2006). They can develop some programs to educate other families and to create awareness among them. These family members can portray a positive image of the system effectively and efficiently.

Family-Centered Care barriers in pediatric oncology

It is physically and emotionally demanding to take care of cancer child patients (Alderfer, 2017). Healthcare practitioners, especially nurses use the help of parents for many reasons including emotional stabilization and communication to gather the required information about past medical history, social and emotional difficulties and sharing their concern regarding the care for their child, therefore, FCC is beneficial to both parties (MacKay & Gregory, 2011). Family-Centered Care approach for children with cancer could make the overwhelming situation for families easier to tolerate and for the healthcare professionals to share some of the huge responsibilities with the family (Sheilds et al, 2009).

The term family-centered care (FCC) is proved to have vital importance in healthcare system being delivered to the children in hospitals (Regan et al., 2006). In earlier decades the researchers had recognized the significance regarding the presence of family members in the life of ill children, counselors emphasized greatly on this factor that parents and families should involve at every stage. According to the core principle of FCC in the pediatric nursing system, the family of a child patient is an excellent source of strength and motivation. They can provide support emotionally to fight off the ailing disease in their life (Denboba et al., 2006).

To have a successful FCC approach in pediatric oncology units, nurses must be educated about this care system, be passionate and have the patience to educate and build trust with the parents and families. Other barriers include but not limited to a shortage of staff, long hours and stressful situation in pediatric oncology wards. They must understand the families’ circumstances and emotional situation, build a strong and yet professional relationship with them. Then, provide them with the necessary information about the patient’s diagnosis, treatment plan, and procedures. The information provided must still follow HIPPA rules and privacy laws.

Families’ situation is another major obstacle with different levels to pay attention. The families are the other end of FCC. They must be able to trust the healthcare providers including the nurses about the care provided, the diagnosis and procedures performed. They must be informed by the nurses and consent about every aspect of the care for their child. Another barrier is the cultural differences and language barriers. It must not be forgotten that the families are under extreme emotions in pediatric oncology wards. Their wishes and needs should be kept in mind and respected always (Regan et al., 2006).

Education of the families is a major step in the FCC approach. The nurses and other healthcare professionals must speak to them in their language, and use least possible medical terms, for them to understand their child’s situation and make the decision with only one goal, the best possible outcome for the child. It is essential that trust and rapport are built between the care providers and families, otherwise, the FCC approach cannot be successful (Family-to-Family Health Information Centers, 2015). FCC is not only effective in the hospital setting but it is also useful for the patient care when he or she is discharged. The family education plays a significant role in caring for an ill child when they are in the comfort of their home. The parents and families must know what to do if anything happens or how to care for their child (Zin & Nor, 2017).

Emotional and psychological status of the parents and siblings of a child with cancer is one of the most important aspects of caring for a patient in pediatric oncology unit. When a child is diagnosed with cancer, families could fall apart. Therefore, not only medical care for the patient but having a team of support for the families is an essential part of FCC approach. This support team shortage is another barrier in providing the best FCC. Social workers and therapists are usually members of the support team.

Another barrier to keep in mind is following up with the children who are discharged. Pediatric oncology nurses should educate both the child and their families about the follow ups and potential adverse effects that could be avoided. The families must follow those instructions and try to support the child emotionally at the same time.

The skills and expertise of both healthcare providers and families can bring out a positive outcome for the result. For this purpose, health information centers, also known as F2F HICs are throughout America. To play a vital role in resolving wellbeing infirmity issues in young and child patients. The objectives of this establishment are communication and history sharing while trust is fundamental. Both parties, families and healthcare providers, should possess the ability or willingness to negotiate (Family-to-Family Health Information Centers, 2015).

In the family-centered care, healthcare professionals aim to provide further resources and advice that are needed to take care of the child after discharge plan (Kuhlthau et al., 2011). With implementing FCC system, the parents do their best when collaborated with healthcare professionals to provide best for their child before and after discharge (Zin & Nor, 2017). FCC enables parents to jump from being judgmental to responder as required by the situation. The ultimate system of FCC can guide parents about the circumstances and conditions when a child should discharge. After discharge, the method continues to promote assistance while the child is recovering at home (Zin & Nor, 2017).

Nurses are trying to incorporate attributes such as communication and the better understanding of course of treatment in the system and adding them to planning for the healthcare system. The importance of communication requires developing a trustful relationship with the patient and family (Regan, Curtin & Vorderer, 2006).

Under the family-centered care approach, families have the right to make decisions and play a big role in caring for their children. This system promotes and encourages them to become a partner for their healthcare plan (Regan et al., 2006). According to Shields and others, child’s illness also affects family and its members since it could be a devastating situation for them. It is essential that their decisions are taken based on current circumstances and not emotionally (Shields et al, 2016).

Due to the nature of the oncology wards, it is essential to pay attention to the cultural and religious background of the parents and provide the care for their children accordingly. Some may have specific needs on how to care for a child and their parents and account for spiritual and cultural needs of somebody in the last days of their lives. For example, in some cultures, blood transfusion is prohibited, or some may forbid surgical procedures (Wiener et al., 2013).

Several studies suggest that family-centered care has many advantages, but they can only be accomplished when respect and trust from both families and healthcare providers are ensured (Merrigan, 2016 and Coyne 2015). The belief upon the system is the key to successfully implement the whole system in the benefit of patient and recovery process.

Galloway suggested that there is an inherent relationship between a nurse and a child patient. Developing trust is a crucial factor needed to determine before providing any care or treatment and could prove to be a challenging task on behalf of any nurse practitioner. But they develop trust by giving an honest explanation and conveying the sense of genuine respect. In the correspondence of FCC system, it is essential to building trust and relationship with family members and the child (Galloway, 2016).

Since the past few decades, there is an increase in children suffering from cancer. which has led to the increase in need for more healthcare professionals providing care to terminally ill children. This situation exerts pressure on the healthcare system to look for some new advancement according to new needs and to modify and cater special needs for ill children. There are some challenges faced by the pediatric nurses while experiencing the FCC approach. To overcome the barriers to the implementation of this system with full outcomes, we must understand the problems first. Pediatric nurses mostly help patient and their families to take certain decisions related to their treatment purpose. (Landier et al, 2016)

While conducting orientation or meeting with healthcare providers, the family members can express their reluctance and uncertainty regarding the line of treatment. The clear goals for supporting the family can be disrupted because the family itself face difficulties to focus on treatment goals. The parents are increasingly distressed because they experience conflicts and strong emotions rather than thinking rationally some might consider nurses as a barrier between patient and doctor’s decision. Sometimes the families believe that nurses fail to acknowledge the proper orientation of treatment to them. Clarifying the purpose of therapy often becomes difficult while demonstrating to the family. It happens when there is insufficient communication between the administration and patients (Hughes, 2011).

The nursing curriculum lacks educating nurses about the implementation of FCC. The shrinking number of educators and less advancement in the curriculum of studies are forcing nurses to carry observational based practice regarding the FCC. The curriculum profile lacks in many segments of the field as it still cannot wholly deliver the whole concept, interference of doctors and therapists is another part. Currently, some of the pediatric oncology care centers across the USA are utilizing FCC, and most of them are still failing to completely adopt this approach because of the barriers previously mentioned including lack of trust between families and nurses, lack of education for nurses and families, differences in cultures and language barriers (Holmes et al., 2016). Research conducted by Lundqvist and Nilstun states that dignity remains intact when FCC is in the system collaborated with others to provide the best care to their patient. But in the past practices, the pride was not given priority while practicing. FCC ensures these characteristics. Altay and others took an interest in the needs for social support in the mothers of the pediatric oncology patients. The study showed that all families needed some help from others in the society but unfortunately what they receive has not been close to what they needed (Altay et al, 2014).

The FCC approach is based upon some assumptions. Necessarily, in some perspectives, people are right, and they possess strength. They have skills, abilities, and knowledge in some respective fields. Families are all about hopes, dreams, and wishes. The family should be guided in every possible way to get assistance (Munday & Wilson, 2017). After acknowledging the basic concept, it becomes clear why it is needed to incorporate this practice while providing care to ailing children.

In a research done by Chan and others investigated the significance of family-centered care system. They distributed questionnaire related to “Patient Family Feedback Form to 171 of patients and families at oncology unit of the hospital between time periods of September 2006 till September 2007 (Chan & Kennedy, 2008). In the questionnaire, the patients and families were asked to choose the specific aspect of FCC system that needed to improve for children care. The results were encouraging as most of the responders were in favor of the FCC implementation and their feedback was generally positive regarding the administration’s efforts, but they believed it still could improve (Chan & Kennedy, 2008). They stated they had less stress after nurses and doctors explained the diagnosis and procedures in simple words and asked them for their opinion on different treatments. Having less stress leads to an easier and better care of the child in general. They thought being involved in the care of their child is what makes them parents (Chan & Kennedy, 2008).

The summarized results or factors that needed to improve were:

• Help in getting desired resources and support

• Briefing family members regarding the situation of the patient

• Responding at the earliest possible time

• The best way of responding to concerns regarding the patient’s treatment

Shields suggested that healthcare system makers and healthcare practitioners should critically examine the delivery and outcomes of the family-centered care approach (Shields, 2007). It recommends implementing the system successfully, and pediatric nurses should attain some skill experience and knowledge to successfully execute the system among hospitals and care practices (Newman, 2006). There is lack of understanding in execution and delivery of family-centered care system which is a barrier to the success of the FCC. The US healthcare system has recognized the situation and trying to reduce the problems in the future.

CHAPTER 3- DISCUSSION

Results of our research show education of nurses and families involved in the care of children with cancer are the most important barrier in the way of Family-Centered Care application in pediatric oncology units. There are three aspects of family education in the newly diagnosed child with cancer that is very important in the outcome of FCC. A) Understanding the diagnosis, treatment options, procedures, and prognosis. B) Educating how to cope with the emotions and increased life demands after the diagnosis. C) Knowing what to do to provide the best care for the child after discharge, at home.

Diagnosis of cancer in children usually happens suddenly which would change the dynamic of a family significantly (Clarke-Steffen, 1993). Education of families and patient should be consistent and continually. Not all the education steps must be taken at the time of diagnosis since the treatment process usually takes several readmissions to the oncology unit or outpatient visits to the oncologist. These are all educational opportunities to teach the families about their child’s disease (O’Leary, Krailo, Anderson, & Reaman, 2008).

Several studies showed that education should be only focused on the most important information and not overwhelm the family with unnecessary information at that stage. It is very common that families would be overwhelmed with all that information is given at the same time, considering their emotional status. The continual education opportunities must be taken into consideration (Aburn & Gott, 2011; Rodgers, Stegenga, et al., 2016).

The content of information must be cored and standardized but the process of providing it to the families must be individualized. This has been done for other chronic illnesses in children such as asthma (National Asthma Education Prevention Program, 2007) and type 1 diabetes (Silverstein et al., 2005). The core of the information provided to families in FCC varies in pediatric oncology compared to other chronic diseases. It depends on the age, diagnosis, prognosis and treatment plan. The FCC education must include all individuals of the families involved in the care of the child with cancer (Committee on Hospital Care & Institute for Patient Family-Centered Care, 2012).

Family education is considered a significant part of the pediatric oncology nurses’ education in the recent years (Nelson & Guelcher, 2014). There have been many studies showing the benefits of FCC and family education including less rehospitalization, less anxiety, fewer days in the hospital and improved adherence to treatment (Kelo, Martikainen, & Eriksson, 2013; Kramer & Perin, 1985). However, there is not enough evidence to support the family education in pediatric oncology (Aburn & Gott, 2011; Landier et al., 2013; Slone, Self, Friedman, & Heiman, 2014).

Another aspect of education to be emphasized is the healthcare providers’ education to teach the families of children with cancer. There must be a supportive environment and training for the healthcare providers, especially the nurses. The healthcare professionals’ education has been recognized as an important step in FCC in other chronic illness in children. That’s why some of the specialties have started certification programs for the nurses and other healthcare professionals who provide education to the families and patients (Gardner et al., 2015; Schreiner, Kolb, O’Brian, Carroll, & Lipman, 2015).

The data from a study by Rodgers and others suggest that parents’ preferences in learning styles are not usually considered as part of the educational process. Most parents of the children with newly diagnosed cancer informed the investigators that the education has been in a telling manner immediately after diagnosis and before discharge which overwhelmed them. The findings showed that nurses must pay attention to a continual process of parental education and try to listen to the parents’ preference of learning style (Rodgers et al, 2016).

Children with cancer are at risk of death and end-of-life choices. The International Council of Nurses believes in the nurses’ role to be of utmost significance in reducing the physical and psychological pains in the terminally ill child and his or her family. They are also important in recognizing and delivering the families’ spiritual, cultural and religious needs. Nurses in pediatric oncology units can help developing an environment of support and care for the families and the patient to understand, accept and deal with the death. Birkholz and others found out that each nurse sees death differently and with a unique perspective, which could affect the patient and family of the patient who might die under his or her care (Birkholz et al, 2004).

In this review of barriers to FCC application in pediatric oncology nursing, we found the bonding and trust between nurses and families as another obstacle. Nurses need to feel like a family in the hospital settings. They need to be sympathetic and caring towards the patient and family in that overwhelming situation of a child with cancer. They must control their own feelings of sorrow and disappointment due to the terminal illness in a child. On the other hand, they must help the patient and families to cope with their situation.

Honest communication between the healthcare professionals and the child or adolescent patient is another aspect of the trust to be built between nurses and patients. Mack and Wolfe found that children like to talk about their illness and its prognosis, and they prefer to be included in the conversation with their care providers such as nurses (Mack and Wolfe, 2006). Children are usually aware of their health and know if their death is close. Parents have not shown any regret in talking about death with their children in case of the terminally ill situation (Kreicbergs et al, 2004). Cancer survivors have shown they appreciate an honest communication about their prognosis. They also appreciated respectful contact with nurses and doctors (Palmer et al, 2007 & D'Agostino, 2011). Parents have also suggested that they like having accurate, honest and understandable communication with the care providers for their children (Contro et al, 2002, & Robert et al, 2012).

The pediatric oncology nurses have identified the communications hardships with the patients and families in a study. They included replying to questions from patients and families, non-effective contact and conflicts with patients and their families (Citak et al, 2013). In another study, Price and colleagues have concluded that healthcare professionals including nurses taking care of the children with cancer found telling the truth about diagnosis and prognosis as one of the difficulties in communication with the families. Sibling support and the emotional response to stopping of the treatment for the terminally ill child is demanding and overwhelming (Price et al, 2013).

The next barrier noticed in this review was making decisions about the terminally ill children and their families. the psychological and social support they need (Dussel et al, 2009). This is another part of the education to be considered for the nurses and other healthcare professionals in pediatric oncology units.

Day and others have shown that educating nurses to fit the FCC model in caring for children with cancer is cheaper and more cost-efficient than other models in having the best outcome for the patients in pediatric oncology wards (Day et al, 2012).

Following ethical laws and morals at the same time is another barrier to consider. Children’s cancer could impose many ethical issues on the nurses caring for those children. There is also a difference in perspectives of nurses and parents regarding how ethical laws are being upheld. For example, the independence of the families to make decisions and confidentiality commitment were two of the main areas of concern, which need to be addressed (Beykmirza et al, 2017).

The studies used in this research had some strengths and shortages at the same time. The strengths included large sample sizes and correct surveys. However, the shortages were more notable. There is no baseline to compare the results of a research on FCC. There is no comparison group and no statistical analyses were performed in most of the researchers. There has also been no type of standardized concept for family-centered care approach and no way of measuring the results.

Even national organizations advocating for the application of FCC in healthcare in the USA do not have a clear approach on how to put FCC into operation. There are more than 30 different definition and operational charts to implementing FCC in the healthcare system (Maternal & Child Health Bureau, 2005, National Partnership for Women & Families, 2010, The Commonwealth Fund, 2010, Family Voices, 2009). There is no consensus on how to define and operationalize FCC as a standard care approach since every hospital uses different approach and policy.

This research also highlights the FCC barriers to having the best outcome for the child with cancer. The impact of FCC on the children and families is obviously improving the health and financial situation of families who are going through a ton of emotional stress at the time of the cancer diagnosis.

The education of families must include immediate family members such as parents and siblings and other relatives who are directly involved in caring for the child with cancer such as grandparents, or even maids and nanny.

Another barrier is the cultural differences between the families, especially immigrants. This obstacle becomes more important when the families have to make a decision on the end-of-life matters. Some cultures prohibit blood transfusions or have specific laws about surgeries or resuscitation. This is when nurses need to understand and respect the families’ decisions and at the same time follow the ethics.

CHAPTER 04- CONCLUSION

Institute of Medicine and other organizations in the USA recommend equal access to a better healthcare for children in the country (Institute of Medicine, 2002, National Association of Pediatric Nurse Practitioners, 2009). Unfortunately, the difference between the healthcare provided and what it should be is immense, especially for children from low-income families and who are of racial minorities (Shi and Stevens, 2005, Zeni et al, 2007). Continual care is of utmost importance in case of children with cancer but unfortunately, it is not what every pediatric oncology person is receiving in the US (Piper et al, 2008).

That is why Family-Centered Care (FCC) is supposed to balance the inequality of care by establishing a mutual helpful partnership with the patients and families, especially for the children with cancer (Engebretson, Mahoney and Carlson, 2008). Sadly, there is lack of evidence that FCC approach really helps to reduce the disparities in the care of children with cancer. Despite the evolution in FCC in the past decades, still, it is not clear if the results of better care for the children with cancer is from the application of FCC approach or the streamlining of the care.

The barriers in application of FCC in pediatric oncology units in the United States including family and healthcare professionals’ education, cultural and language difficulties, honest communication with the families and patients especially about the prognosis of the diagnosis, social and psychological support and standardization of FCC operations are in the way of operationalizing a perfect FCC approach in pediatric oncology wards.

This review also suggests the need for more research into the obstacles preventing FCC to be implemented and used properly in all pediatric oncology units around the United States of America.

This review found that education of nurses in school to be prepared to carry out FCC duties, especially teaching families about diagnosis, prognosis and treatment procedures is one of the most important bases of FCC for pediatric oncology. The nurses need to be educated specifically to learn how to deal with death, overwhelming emotions of the families and patients when they hear about the diagnosis and prognosis. They must know how to bond with the children and their families. Families need to trust the nurses and that is another reason for a special education. We even recommend having specific certificates requirements for the nurses willing to practice in pediatric oncology wards.

Family-centered care education needs to be continual and not all at the time of the diagnosis to overload the families with too much information in that emotional state. We believe it is important for the nursing students to have practical experience in pediatric oncology departments to understand how to bond with the families and educate them from the more experienced nurses.

ABSTRACT

Cancer incidence has increased among children in the past few years. Due to advancement in medical diagnosis and treatments, there has been an increase in survival of children with cancer. Family-centered care (FCC) has been introduced in the 1960s for better care of the patients by involving the families in making decisions and informing them of the full aspects of diagnosis, prognosis, and treatment. The FCC role becomes more significant in pediatric oncology wards because the patients are children and need the support of their families even more and not competent to make medical decisions. However, there are barriers in the way of implementing FCC in all US pediatric oncology wards. In this review, we investigated these barriers and found that education of families and nurses responsible for caring for the children with cancer is the most important obstacle. Other barriers included honest communication and trust between the families and nurses and ethical obligations. We recommend specific educational programs and certification for nurses and healthcare professionals willing to care for children with cancer. In these programs, they should be learning how to communicate honestly and compassionately with their patients and families without breaking ethics laws. They should also learn how to educate the families on a continuous basis and not just after the diagnosis.

Keywords: family centered care, pediatric oncology, barriers, nursing education

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