Omid\'s Story the Power of Family Centered Care

Omid's Story

Being ill is never a simple thing. Besides the physical tolls a medical condition can take on a person's body, there are also many mental and psychological costs that affect a sick person. Nor do these physical and mental effects only harm the person with the medical condition. Research shows that family members and close friends of ill people will also be seriously affected by the condition. Illness is a physical, mental, sociological, and financial drain and, in some family units, an illness can destroy the fabric of the family itself. A person who is involved in the medical profession must have a clear understanding not only of medicine and what they need to do to cure or treat an illness; they must also be aware of the psychological issues that a patient deals with, along with the pressures which are placed upon members of their family. Nurses are therefore tasked not only with treating the mind and the body of their patient but also with trying to preserve, maintain, and strengthen the family dynamics of their patients. In the article "Omid's Story: The Power of Family-Centered Care," author D. Raoufian explains what she experienced when her own son Omid became ill and how the family dynamic in which he lived was integral to the care he received. This first-person essay explains how one family dealt with an illness of a child, and by extension, illustrates the importance and effectiveness of family-centered care in the treatment of disease or injury in patients, particularly those with prolonged conditions.

First it is necessary to fully explain what is meant by family-centered care. Family-centered care is primarily found in pediatrics' medicine because children who are seriously or chronically ill require the greatest support system, but it has also been used with adult patients to a great deal of success. According to research conducted by Tondi Harrison (2010), "Providing FCC means that the clinician incorporates into caregiving the knowledge and conviction that family is the constant in children's lives, children are affected by and affect those with whom they have relationships, and, by including families in care processes, children will receive higher quality care" (page 335). The argument is that the more the parents and loving family members are involved in a child's care, the more likely that child will be to receive quality care and, consequently, the more likely the child will be to recover from their medical condition and to thrive later on. Before the middle 20th century, all medical conditional were treated by medical professionals within the hospital setting. Parents and other family members were not involved in the treatment of their loved ones after their care had been taken over by professionals. This scenario changed when the psychological ramifications of isolating ill children from their family became known. For more than fifty years, those in the medical profession have been aware about the importance of family to sick children and the fact that there is still a breach between the information of the medical staff and the parents and family members can be considered nothing short of reprehensible.

St. Jude's Children's Hospital, which is a non-profit facility that specializes in treating cancer in minors throughout the United States regardless of the financial situation of the family, utilizes family-centered care as an important factor in the treatment of patients. According to this group, patient family centered care is based on four criteria: dignity and respect, information sharing, involvement, and collaboration (St. 2013). To fulfill these criteria, hospital staff are responsible for first listening to the patients and their families and honoring the ideas and choices which family members make. The heritage of the family, including religious and cultural practices must also be taken into consideration. It is never beneficial to malign the beliefs of the family or to take that attitude that those in the medical profession are superior to the family, although they make be less informed about treatments or even the condition from which their family member suffers. St. Jude's hospital (2013) states, "Care provided should be equal to all patients and flexible so that the needs and choices of families can be met." Secondly, the sharing of information from the medical professionals to family members is extremely necessary. "Open honest communication between patients, their families, and health care staff [is necessary]. Being willing to talk about the bad as well as the good is important for changing, improving, and developing best care practices and policies" (St. 2013). Patients and their family members must be given all the information that is possible in order to make the most appropriate decision in a given situation. Parents and other family members should be encouraged in their involvement in the treatment of their child or in whatever relationship they have with the patient. "When families and patients understand their options, they are empowered to be involved in their child's care" (St. 2013). Even in adult patients, it has proven beneficial to include other family members into the decision-making process. In situation where health is at stake, the more support that can be provided to the person who is ailing, the more likely that the right choice will be made. Finally, collaboration is necessary between medical professionals and family members. According to St. Jude's (2013), "By working together, families and staff are strengthened by their partnership and shared knowledge. This results in the highest quality of care." These are the components in family centered care and it would seem obvious that a patient who was supported by family members and a family unit which was given the greatest amount of information and that their inclusion in the decision-making process were encouraged would create situations for better success in treatment.

The story that Raoufian tells is a powerful one and illustrates exactly how important a functioning family support network is to a patient who is either still in an illness or is in remission. Even when a patient is recovering, they still must rely on their family for physical and emotional strength. What is most amazing about the tale Raoufian tells is that she believes the family unity that they possessed was potentially more helpful to her child than the actual healthcare system which, thanks to the red tape and bureaucracy of the system, seemed more intent to hinder their quest for help than to treat their child although the doctors and nurses with whom she interacted she only has the utmost respect for. She explains that five years before the writing of her article her son was born prematurely at only 25 weeks and had to spend the first six months of his life in the hospital. After that initial six months, the child had continued health issues and the family became permanent fixtures in the Canadian hospitals, relying on healthcare professionals and one another to get through this extremely difficult period for their child and themselves.

The Raoufian family was unique in that they had a primarily positive experience with the individual nurses and doctors who they dealt with during their time of need. The mother of the child writes, "We were fortunate to meet some wonderful health care professionals who encouraged us as parents right from the beginning. We felt supported and respected, which, in turn, gave us the confidence to advocate for Omid during the more difficult times" (Raoufian 2003,-page 227). This is unfortunately not the same for the majority of the population. Both the parents of young Omid came to realize that a great deal of his care and indeed his chances for recovery would be because of their actions, rather than those of the medical professionals. They were fortunate to find professionals who taught them how they needed to be with and for their child. These folks taught the Raoufian family how to care for their child, which is the opposite experience from most wherein it seems to be the case of them vs. us rather than working cohesively in the best interest of the patient. The Canadian system is one of the better forms of healthcare, according to the population of that country; particularly in comparison to the healthcare available in the United States.

Communication, as stated, is one of the key components to successful treatment. However, in some medical facilities, the communication and sharing of complete information can be limited and even wholly unsatisfactory. One of the reasons why information may not be shared has to do with finances. It is an unfortunate aspect of the healthcare system, in Canada, the United States, or other parts of the world that the first consideration will often be not what is best for the patient, but what is least expensive for the government. If a family is wealthy and able to cover health care fees themselves, they will invariably receive better treatment than those who are dependent on insurance or the government for financial aid regarding medical treatment. The insurance companies, or in Canada's case the government, takes cost into consideration when determining a course of treatment. Those in the medical field in most cases flinch and chafe under this oppression by those interested in money, but there are some who are as interested in keeping things cheap as those footing the bill. The financial aspect of the healthcare system can be a frustrating one, particularly for nurses. They are frequently the people who spend the most time with a patient and who are therefore the most invested in the person's care. Additionally, they will be more familiar with the patients that they treat frequently and will consequently build up a rapport with them. When you spend a great deal of time with a person, you learn about their personality and to deprive someone who they know well of the best medical care possible because of financial issues can be depressing to those in the medical profession who truly care about their patients.

There is also a potential gap in communication of information if the medical care professional in charge of a patient determines that he or she wishes to pursue a course of action and that only this choice will be shared with the patients in his or her care. Lack of communication was an issue that the Raoufians faced with several of the less-than stellar members of the medical field that the family had to deal with while treating their child. Indeed Raoufian describes the lack of communication and the dearth of information given to them as "degrading and frustrating" (2003,-page 227). The parent who wrote the article states specifically the fact that the potential negatives of their son's situation was not adequately conveyed to them by those treating Omid (Raoufian 2003,-page 230). When a parent had a question for the medical staff to which the answer was not at hand for them or to which they did not wish to give the answer, the family was put off and distracted from their course of inquiry. This creates a psychological dilemma between family member and those in the medical staff wherein it is evident to the family that information is being withheld which breeds distrust. Rather than admit that they do not currently know the answer to a question or admitting that there was a potential loss of progress or indeed loss of life, the medical professionals further underscore the difference between family and staff. It again becomes a situation where there are two sides combating for dominance of the patient and not doing what is best for that patient. Instead of creating a unified team with all parties focused on making choices which would improve the quality of life of the premature infant and ensure his successful development, those in positions of authority greatly chose to make decisions on behalf of their patient. Although the doctors in question had the best interests of the child at heart, the simple fact is that the decision about courses of treatment should not have been left solely to the discretion of medical professionals.

Despite any limitations which are put upon the patients or their families because of finances or bureaucracy, the importance of family involvement in a patient's care cannot be denied. According to research conducted by Beth Bruce and her team (2002), family centered care, or FCC, is paramount in determining the potential for successful treatment of a patient. This is particularly the case when the patient is a child. For children, dealing with a chronic or serious illness can permanently affect the child's mental state. If a child is treated in a loving and encouraging environment, then they will have more faith in their own recovery and thus provide a stronger fight against the disease. If, on the other hand, there is not familial support, then the child is very prone to succumb to the disease; not the least reason of which is that the family will be uneducated or perhaps even uninterested in contributing to the care and treatment of the patient.

In the article "A Multisite Study of Health Professional's Perceptions and Practices of Family Centered Care," authors Bruce et al. (2003) determined that although FCC has proven to be an absolutely integral component to the treatment of patients, particularly in children, it has not been universally explored and introduced within hospital settings. Too few medical professionals are imparting to family members and parents how important their inclusion is in the treatment of the ill. The study conducted by this group found that experiences like the Raoufian family had are too few and far between. In most situations the frustrating and degrading lack of communication that the Raoufians felts for the minority of medical professionals that they encountered is the norm. Most hospitals still have a model wherein the medical staff makes the decisions regarding the care of their patients, whether they be adults or children, serious conditions are mild. The medical professional, the doctors and the nurses, have the education and the majority therefore feel that they should make the choices for the care of their patients and that the desires and influences of family members should be kept to a minimum so as not to interfere with the plans of those in positions of authority. There simply are not enough medical facilities which give parents and family members the necessary tools to allow them to help their loved ones.