Theories of nursing can be directly applied to nursing practice. Middle range theories are especially important in caring for patients. Recognizing that the theory of chronic sorrow is applicable to pediatric epilepsy patients is essential to the care of the child as well as their family. The theory of chronic sorrow is related to periodic feelings of sadness that a person experiences due to a loss or chronic life dilemma. The pertinence of chronic sorrow will be evaluated related to the nursing practice of pediatric epilepsy patients. Pediatric epilepsy patients and their families face many ongoing problems which can trigger chronic sorrow at any given point in their lives. A scenario surrounding the care of a pediatric epilepsy patient and their family will be discussed associated with the theory of chronic sorrow. The nurse will learn from this paper the rationale behind applying nursing theories to their everyday nursing care.
A Clinical Scenario in Pediatric Epilepsy
The middle range nursing theory of chronic sorrow is apparent in many patients and families affected by epilepsy. Epilepsy is a relatively common diagnosis in the pediatric population. Chronic sorrow can be triggered over and over again with new seizures, delay in development, treatments and the many restrictions on living life as “normal” children do. Nursing care of a child and family experiencing the effects of epilepsy can be challenging.
An eleven year old female presented in the pediatric epilepsy monitoring unit for intractable epilepsy. She had a diagnosis of epilepsy since the age of three months. She also had secondary diagnoses of attention deficit and hyperactivity disorder (ADHD) and cognitive developmental delays. Her family brought her to the hospital for a second opinion regarding treatment options for her intractable seizures. The patient is an only child and lives at home with both of her biological parents. The patient’s mother works outside the home and the father was a high school teacher but has made the choice to stay at home due to patient’s extensive needs and diagnosis. The patient attends public school in a special needs classroom setting with other children with developmental disabilities. She requires the use of a classroom aide due to her extreme behavioral outbursts. Physical, occupational and speech therapies are provided for her while at school and she is reported as functioning at a twelve year old age level. The parents revealed that the patient does not socialize well and most children are fearful of her due to her behavior. They feel that she is challenging no matter what they do.
During their stay the parents displayed behaviors of inappropriate coping and chronic sorrow. They often described the patient as: “A Dr. Jekyll or Mr. Hyde”. She was observed to be pleasant at times, but had a short attention span. Her behaviors could become disruptive and she had frequent outbursts. She is dependent on others for assistance with hygiene due to frequent falls from seizures and inability to perform tasks on her own. Her father also voiced that she had signs of regression over the last year.
The family has never sought services or explored resources through any epilepsy foundation. They have also never looked into any other community services such as the board of Mental Retardation and Developmental Disabilities (MRDD), Wavier services or respite care. The father reported that they have no choice but to try and cope through this lifelong disease. The father appeared to be somewhat gruff secondary to his interactions and responsiveness towards the patient’s behaviors. He was then observed on the video monitoring system to threaten the patient by showing his fist to patient. Her mother was then seen pushing his hand away and said for him not to do this because they were on camera. It is unknown to why the father was doing this jester or if he was angry at the time, but no physical abuse was seen. The nursing staff felt at this point that there were many coping concerns and spoke to the family regarding their frustrations. Social work and child psychiatry were also consulted to evaluate this escalating situation.
During this admission an extensive surgical workup was performed. The patient was taken off of all antiepileptic medication so that a seizure could be recorded and observed on the electroencephalogram (EEG). It was very difficult and emotional for the family to hope for a seizure to help the patient’s overall prognosis. After several days of purposeful sleep deprivation the patient began to have seizure activity that escalated to the point of status epilepticus. The seizures were able to be controlled on the unit with medical treatment and the patient was restarted on her antiepileptic medication. After a week of extensive monitoring it was determined that she was able to be released home with her parents to come back for epilepsy surgery at a later date.
The Theory of Chronic Sorrow
The middle range theory of chronic sorrow is relevant to families of children inside the field of pediatric epilepsy. They may experience many emotions upon identification of this medical problem and throughout its’ management. Chronic sorrow can be defined as “periodic recurrence of permanent, pervasive sadness or other grief-related feelings associated with ongoing disparity resulting from a loss experience” (Peterson and Bredow, 2009, p.149). It can occur in the individual with the illness or with the caregivers and family (Dunning, 1999).
An experience of loss is usually a precursor usually to chronic sorrow. It may be a loss without a foreseeable end point. Examples of this could be: the birth of a disabled child or diagnosis of a chronic illness, or a more clearly defined loss event, such as the death of a loved one (Peterson and Bredow, 2009). A second precursor to chronic sorrow is considered to be disparity. A disparity is “a gap between the current reality and the desired as a result of a loss experience” (Peterson and Bredow, 2009, p. 149). A disparity happens when a patient or their family can not let go of the situation or the loss that has occurred. These can lead to recurring experiences of chronic sorrow.
Trigger events can often bring about feelings of chronic sorrow. A trigger event is defined as “a situation, circumstance, or condition that brings the negative disparity resulting from the loss into focus, or exacerbates the disparity” (Peterson and Bredow, 2009, p. 149). This can depend on how often the patient has seizures and the affects that they have on the child’s overall quality of life. These events can also occur when the child has failed another medical intervention or is unable to accomplish an additional developmental milestone related to their chronic seizure activity. One of the most frequent triggers of chronic sorrow in parents of small children with disabilities is the regression or absence of developmental milestones (Peterson and Bredow, 2009). The trigger situations are usually unexpected and can appear at any given time.
Management methods for the theory of chronic sorrow are essential in the care of the child and their family. The management of chronic sorrow involves two different types of intervention. These types of management interventions are considered to be internal and external. Internal intervention includes personal coping throughout an episode of chronic sorrow. Different types of action oriented strategies are used to help the patient or family feel more in control of the situation that they are experiencing (Peterson and Bredow, 2009). Internal management can be also gained from support groups or speaking to other individuals in similar situations. Interpersonal communication is another strategy of internal management that has been identified in helping someone deal with their chronic sorrow (Peterson and Bredow, 2009).
External interventions are those received from a reliable healthcare member. “It is important for professionals to recognize that individuals who have experienced a significant loss may evidence the periodic recurrence of grief-related feelings, defined as chronic sorrow” (Peterson and Bredow, 2009, p. 154). Nurses can use this knowledge to provide support to those patients or families experiencing an episode of chronic sorrow or to those that may be have an episode impending. It is important to identify whether or not the individual has any internal management interventions. These interventions can then be assessed, strengthened, and supported (Peterson and Bredow, 2009).
Chronic sorrow can affect any person and nobody is immune to feeling of a loss. The emotions raised by chronic sorrow can affect every individual differently. The middle range theory of chronic sorrow provides a framework for understanding the reactions of individuals to various loss situations and offers a new way of viewing the experience of bereavement (Peterson and Bredow, 2009, p. 151). It is important for the entire healthcare team, especially the nurses caring for these individuals, to be aware of the chronic sorrow and the concepts that define it as a theory. “The middle range theory of chronic sorrow has a widespread application for nurses and others who strive to better understand individuals’ responses to loss and to define effective interventions for those experiencing chronic sorrow” (Peterson and Bredow, 2009, p. 157).
Application of Chronic Sorrow to Pediatric Epilepsy
When a child is first diagnosed with epilepsy, the entire family and support system can become overwhelmed. Chronic epilepsy can consume the lives of all involved with the child. The child and their caregivers have to be concerned with medications, treatments, specialty diets, ongoing tests and appointments. The child and their family also have to be aware of activity restrictions and precautions when at home, school, or out in public. This can become a lifelong balancing act. The theory of chronic sorrow becomes important for nurses to fully understand the care of a child with epilepsy. There are so many trigger events that can be experienced by these children and their families that this can become an issue that arises often. According to the literature, chronic sorrow is considered to be a normal response to an ongoing loss (Peterson and Bredow, 2009).
In the article by Hobdell (2007), chronic sorrow was studied with children and families affected by epilepsy. Regardless of onset, patient age, or circumstances involved, chronic sorrow is an important variable to consider. The eleven year old patient and family who were cared for in the pediatric epilepsy unit had many issues that indicated that they were experiencing chronic sorrow. Their struggle with chronic sorrow began at diagnosis. Contending with the diagnosis of epilepsy and acting to overcome the inherent problems associated with this medical condition form the basis for a parent’s ability to cope with the care of a child with epilepsy (Hobdell, 2007). This family waited years to be blessed with this child and they were now facing the biggest uphill battle of their lives. The course of a child’s seizures, potential complications, and long-term prognosis are often unknown (Hobdell, 2007). This patient also faced diagnoses of ADHD and cognitive developmental delays secondary to her epilepsy. This family thought that the epilepsy was difficult enough, but they then had to try and cope with difficulties in every other aspect of their daughter’s life. This seems to be the time when their chronic sorrow intensified. The inevitable loss of the image of an ideal child, intensified by the diagnosis of a child with epilepsy, may initiate a mourning process that varies in intensity, rate, and duration (Hobdell, 2007).
The diagnosis of epilepsy has affects on the entire family as well as the patient. The patient’s father felt as though he had to stay home to care for her seeing as she needed regular supervision and her mother could provide more monetarily. For parents who are working full time and caring for a child with chronic illness, the stressors related to managing work and caring responsibilities are magnified (Dunning, 1999). Her parents appeared to be involved, but were inappropriately reactive to episodic outbursts, which in turn seemed to increase the episodes. They were embarrassed that they were observed threatening the patient, but admittedly were not sure of how to effectively cope with the situation. Additional research has also examined adaptation, burden of care, and stigma as variables impacting stress and the ability to cope with the diagnosis of epilepsy (Hobdell, 2007). They blamed themselves for their daughter’s problems. They explained that they tried to have a baby for years. After many unsuccessful pregnancies they believed that were blessed with this perfect angel. When the patient started having seizures at the age of three months they were devastated and this is when the rollercoaster of their life began. Under these circumstances, it is common for parents to be reminded of the loss associated with the “perfect child” they once dreamed of or to experience an increased fear that their child may not be able to live the quality of life they once anticipated (Gordon, 2009). The diagnosis must initially be incorporated into daily life without it completely taking over (Hobdell, 2007).
During the initial diagnosis of epilepsy the medical team explains the basics of what to expect, treatments, interventions for uncontrolled seizures, and safety precautions. The nursing staff has a very important role with these patients and their families. They can offer words of advice and examples of what others would do in a similar situation. The nurses work hands on with these types of patients and families everyday and have a wealth of knowledge to help them feel that they are not alone. Becoming accustomed to a new way of life can be very challenging. Education is essential during the discharge process to help the family in being at ease with dealing with this new dilemma that they are facing. Epilepsy can overpower a patient or family’s independence. Pediatric nursing is not only care of the children but care of the whole family (Dunning, 1999).
Nurses should effectively recognize matters of concern in families of children with epilepsy. This includes impending feelings of sorrow and their understanding and utilization of a variety of management and coping strategies. The capacity to promptly acquire this information may facilitate nurses in identifying families in need and put into action appropriate interventions. They must do this with the expectation of contributing to a more optimistic result for families of children with epilepsy. With an understanding of chronic sorrow, nurses can plan interventions that recognize it as a normal reaction, promote healthy adaptation, and provide empathetic support (Scornaienchi, 2003). Every aspect of the child’s life must be addressed. These issues include: home safety, personal care, school safety, driving, recreational activities, medical compliance, and social relationships. With the life-long issues that this child will face, they will need a significant amount of support from the nursing staff. Theories allow for the nursing staff to understand why a family feels the way they do and possible interventions in helping them cope with a difficult situation. The middle range nursing theory of chronic sorrow is applicable to any pediatric patient and their families dealing with the struggle of epilepsy.
Adaptation occurs with both internal and external management. According to Gordon’s (2009) article, caregivers of patients found support from a variety of sources. The sources of support that this patient and family have are their extended family, friends, the nurses and other medical professionals. As nurses, our interventions should be listening to someone that is enduring chronic sorrow. Internal management differs in all individuals. Sometimes they do not want to reveal how they are feeling, especially to a complete stranger. Respecting the individual’s internal management strategies will allow for the most positive results. Parents see strength and courage in their child and that alone gives them the strength they need (Gordon, 2009).
External management of chronic sorrow is an intervention taken on by the patient’s nurses and other medical caregivers. When the nursing staff recognized that there were concerns regarding coping strategies they consulted the social work and child psychiatry teams for assistance. Anticipatory guidance, support services, and community resources can be offered to these families (Dunning, 1999). Nurses begin to build relationships with their patients and their families over the period of treatment. During this time span, nurses may become aware of triggering events. Acting to prevent a triggering event or decreasing its capacity may suspend an episode of chronic sorrow.
The theory of chronic sorrow will be relevant throughout the ongoing treatment of the seizure activity. Sadly, in this field of pediatrics, many children and their families will have to manage with intractable epilepsy for the rest of their lives. In these cases, the family may have to suffer with chronic sorrow perpetually. When nurses have a thorough understanding of the theory of chronic sorrow, they will be able to provide more efficient support and help to diminish occurrences of chronic sorrow. Families who used effective adaptive strategies, such as methods to reduce the burden of illness, had a better quality of life (Scornaienchi, 2003).
Conclusion
The nursing theory of chronic sorrow is crucial in taking care of patients in the specialty of pediatric epilepsy. This theory directly applies to pediatric epilepsy due it its uniqueness and lifelong effects that it has on the patient and all members of the family. The approach that the nurse and medical team takes in caring for this patient can help them learn to cope with this ongoing medical problem. It is crucial for healthcare professionals to realize that the emotional response to epilepsy may have a negative impact on the child or their family. They may have difficulty in adapting or adjusting to life changes, as well as have trouble in effectively coping and working towards promoting quality of life.
Every encounter with the patient or their family should focus on positive adjustments. Offering support to help relieve the burden of chronic sorrow can be very beneficial for them. Reducing feelings of guilt related to chronic sorrow can help facilitate adjustment between the patient and their family. This all can allow for positive change in the lives of pediatric epilepsy patients and their families. It has been found that little research has been done regarding chronic sorrow related to pediatric epilepsy and that it needs to be more thoroughly explored. It should be determined whether intervention should be initiated at diagnosis with appropriate support and ongoing educational intervention. Timeliness of intervention may have a more positive impact on the child and their family in regards to perceptions of epilepsy and quality of life.
Appendix
In preparation for researching literature related to the theory of chronic sorrow and pediatric epilepsy I decided the best place to start was Kent State University’s library homepage. I formulated a plan ahead of time as to what kind of information was important to my search. Precious time can be lost from going into a search unsure of what information to look for. I then went into the research database and found that the search engine EBSCO Host would allow me to search CINAHL, Medline Plus, and Health Source: Nursing/Academic Edition at the same time. I first narrowed my search by the term “chronic sorrow” which revealed one-hundred and thirteen articles. I then narrowed my search further by adding in “pediatric epilepsy” which yielded one result. I switched that term to just “pediatrics” due to only one article available for review and I was then able to view twenty articles. From the results page I narrowed the articles to those that are less than 10 years old. This process was essential in finding the exact information that I needed and left me with seventeen pertinent articles. Many articles that I found would be important to my literature review were not available in full text. Several of the articles were available through the Ohio Link, but due to time and distance factors to the college I found that I could access some of them directly from searching for them in Google Scholar. I found this to be the most time efficient way to access the information I needed in my literature review. I chose just the most appropriate articles available on my topic. I did this by reading through the abstract to determine whether they would have any relevant information. After reading through the abstracts, it was seen whether or not they would be beneficial to my literature review. In doing this entire process I found four articles that were most appropriate in the literature review of pediatric patients suffering from chronic sorrow.
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