Caregiver Role Strain due to Bipolar Disorder in Children
Submitted by Jenna M. Cheese, Creighton University
Family dynamics are complex and roles are often complicated. This is especially true when a child has a behavioral disorder that challenges the primary caregivers or family members. Bipolar disorder is a behavioral disorder that is exemplified by extreme alternating mood swings (Apps, Winkler, & Jandrisevits, 2008). These episodes “involve both major depression and mania which cause dysfunction in multiple areas of a child’s or adolescent’s life including home, school, and with peers” (Apps et al. p.1). Due to a lack of information or knowledge of the disorder, family members may not know how to react to a child with bipolar disorder, thus causing stress and tension within the family. The purpose of this paper is to address the relationship that children with bipolar disorder have with their primary caregivers and to discuss effective nursing interventions to assist in the care of the child.
Bipolar disorder affects people of all ages. This paper will focus on children between the ages of 5 to 14 years old. Approximately 2% of children in the elementary to middle school age range are affected by bipolar disorder (Pavaluri, Birmaher, & Naylor, 2005, as cited in Wade, 2006). Specialists approximate that 1 million children suffer from bipolar disorder in the United States; however, the actual number of cases is unknown due to difficulties diagnosing this illness (Olson & Pacheco, 2005). Studies show that 70-100% of children with bipolar disorder will recover, but as many as 80% will undergo another reoccurrence within two to five years (Birmaher, Axelson, & Pavuluri; Pavuluri, Birmaher, & Naylor, 2005; Birmaher et al., 2006; Geller, Tillman, Craney, & Bolhofner, 2004, as cited in Birmaher, 2007). Typically 10 years elapse before a correct diagnosis is made and with every year there is a 10% decrease in the probability of recovery (Pavuluri, Birmaher, & Naylor, 2005; Birmaher et al., 2006, as cited in Birmaher). Bipolar disorder can ultimately lead to suicide. When suicide does a occur it is either seen as either an accident or seen as a result of lack of attention (Olson & Pacheco). Bipolar disorder affects all socioeconomic and ethnic groups similarly (Wade). Regarding gender, bipolar disorder affects boys and girls equally; however, boys display more manic symptoms and girls more often exhibit symptoms of depression (Cummings & Fristad, 2008). Bipolar disorder most likely occurs in children who have a genetic link, experience recurrent emotional alterations, and have an overall decreased function level (Singh, et al., 2007; Hauser et al., 2007, as cited in Cummings & Fristad).
Outcome Selection and Variance Analysis
In order to care for a child with bipolar disorder, nurses must take into consideration the caregivers or family members affected by the mental illness. The caregivers may not be familiar with bipolar disorder and therefore must be educated on the disease process and treatments. Additionally, they may be concerned about who to turn to for emotional support and nurses can inform them of local support groups and counseling opportunities. Nurses must aid caregivers in assisting his or her loved one and help them stay “emotionally connected with the ill child, retaining a sense of self and hope, and finding a way through the elaborate systems of care and treatment regimes” (Doornbos, 2002; Nelson, 2002; Rose, Mallinson, & Gerson, 2006; Saunders, 2003, as cited in Wade, 2006, p.886-887). The nursing expected outcome for primary caregivers of children with bipolar disorder is that they will understand bipolar disorder and receive both education and support in caring for their child.
There are variances that hinder a successful completion of the nursing expected outcome. The first variance is that primary caregivers are unable to provide appropriate care for their child with bipolar disorder due the burden that the extensive care of the child creates on the family and the caregiver as they struggle to manage their own personal lives. This variance is care related, for the family has to juggle care for their child and their own lives. Having a child with bipolar disorder can be difficult on a family due to financial expenses, limited outside activity involvement, and exhausted caregivers (Rose, Mallison, & Gerson, 2006). One caregiver in a study by Wade (2006) explains how erratic and time consuming the illness can be. The participant states “it seems like it’s a matter of adjusting all the time, every day, hour to hour, you know, minute to minute” (Wade, p.892). Caring for a child’s unpredictable behavior consumes the caregiver’s entire day and therefore affects his or her personal life. Being the primary caregiver is an overwhelming and taxing challenge that can cause caregivers to lose a part of themselves (Wade). It is a challenge to discover a way to provide the upmost care for their child, while maintaining a healthy and enriching environment for all family members.
The second variance is that primary caregivers and families are often intimidated, afraid, and disturbed by bipolar disorder and the stigmas associated with it. This variance is care and client related. It is care related since it focuses on the appropriate care of the child. The variance is also client related since the disease the client suffers from is discussed in detail. Bipolar disorder often displays random irritable mood swings in which parents to feel like they are “walking on egg shells” trying to avoid a sudden outburst (Apps et al., 2008, p.85). Caregivers become concerned about their children’s future and typical phases of development. They often worry if they will ever do well in school, have relationships, or have their own identity (Morris, Miklowitz, & Waxmonsky, 2007). Wade (2006) concluded that fear was a common theme among caregivers. They are fearful for the protection of their child and others, afraid that professionals will neglect their child, and uneasy about what their child’s future entails (Wade). It is common for families, especially in small communities, to feel ashamed about having a child with a mental illness and believe that others think they should be able to handle this problem themselves (Rose et al., 2006). The media’s negative portrayal of mental illness displayed by stories involving violence and murder creates a harmful stigma of family members and patients themselves (Rose et al.). Caregivers deeply struggle with the reactions of others to their child as well as the fears associated with the disease itself, both feelings directly hinder their care.
The final variance is that the primary caregivers have a deficiency of resources and education in order to provide the best possible care to their child. This is a care and system related variance since it relates to the care of the individual and focuses on the faults in the healthcare system regarding available mental health information and support. Often information and pamphlets are given to caregivers when their child is first diagnosed with bipolar disorder. Though caregivers feel the provided information is a good beginning, it leaves them feeling inadequate and confused about how to care for their child later (Harden, 2005). It is a constant struggle to acquire information and in order to be advocates for their children they are forced to educate themselves (Wade, 2006). Parents have to research current and new laws regarding mental illness, making it a continuous battle for their child against the system (Wade).
Additionally, due to the newness of the diagnosis of bipolar in children and unfamiliarity with the psychiatric medical field, parents feel that their children are merely guinea pigs and thus very critical about the new medical treatments their child receives (Harden, 2005). There is an overall lack of trust in psychiatry and this is escalated when psychiatrists are unable to provide detailed explanations as to why their children are undergoing certain treatment regimens (Harden). A lack of communication among health professionals and educators concerns families, increases tension, and impedes on the care process (Wade, 2006). The shortage of available information is a disheartening aspect family’s face when attempting to support their loved one. The following nursing interventions will focus on the final variance, which include the primary caregiver’s decreased availability of instruction and guidance in treating bipolar disorder in their children.
It is vital that nurses intervene in supporting those caring for children with bipolar disorder. The appropriate nursing intervention plan is to assist the primary giver through education regarding the disease and treatment options. The nurse should also advise them of support and therapy programs in the local area. Finally, the nurse can invite and help arrange the collaboration of their care with interdisciplinary teams in order to create the ideal care management program for their child’s illness. This intervention plan incorporates numerous ways that a nurse can directly contribute to the care of the client and their caregivers.
The first stage of the intervention plan is to educate the primary caregivers on the signs and symptoms of bipolar disorder and treatment options available. Nurses must assist in the identification of bipolar symptoms to reassure that the proper diagnosis has been made (Apps et al., 2008). It is necessary for the nurse to be educated about the social, emotional, and academic influence bipolar disorder will have on the family (Olson & Pacheco, 2005). Olson and Pacheco focus on the importance of having a support system, using a calm voice, positive reinforcement, and assisting with organizational strategies. The signs and symptoms of bipolar disorder are overwhelming. Therefore, assisting in the understanding of what normal child behavior is in contrast to the behaviors exemplified by a child with bipolar disorder can relieve stress (Apps et al.).
Numerous forms of treatment are used to treat bipolar disorder. Medication is commonly used and nurses must be able to educate caregivers of the potential side effects, negative signs relating to over-medication, and signs of toxicity (Apps et al., 2008). Since treatments often involve multiple medications, the importance of adhering to a medication regime, even if signs or symptoms subside, must be continuously communicated and educated to the family and client (Birmaher, 2007). Medication must be available at an affordable cost and comorbid diseases should be treated as well in order to enhance overall treatment adherence (Birmaher). An alternative treatment method is using a biopsychosocial framework which is a family approach (Morris et al., 2007). This is used to create stability and structure routines in the home in order to assist the child with self control and personal emotional development (Morris et al.). The goal of this treatment is to assist families in order to enhance medication adherence and decrease relapses (Morris et al.). It is essential that nurses aid in the diagnosing, treatment, and education of primary caregivers who care for children with bipolar disorder.
The second stage of the nursing intervention plan challenges nurses to encourage families to utilize support systems. Strong support systems can be difficult to find, but are necessary for the caregivers not feel lonely (Wade, 2006). Interest in peer support groups is present, but caregivers often do not have time, energy, or available care centers to watch their child while they participate in a support group (Wade). Nurses can discover and lead alternative methods of support systems for instance online, telephone, or through e-mail (Wade). Having support within the family allows caregivers to be less distressed about the disorder compared to when there was no support (Rose et al., 2006). To enhance caregiver’s coping mechanisms nurses can suggest or create support systems.
The final aspect of the nursing intervention plan incorporates the nurse’s collaboration with interdisciplinary teams including psychiatrists, therapists, educators, and community resources. It may be necessary that the family and client are referred on past primary care to a mental health specialist for increased management of the bipolar disorder (Cummings & Fristad, 2008). Nurses should be a stable and available influence in the client’s life in order to educate and support the caregiver especially due to the shortage of child psychiatrists (Wade, 2006). Therapy is another interdisciplinary intervention involving teamwork between the family, physician, and therapist that can educate, empower, and continue positive treatment outcomes for families (Cummings & Fristad). Research shows that therapy aids in the management of the disease treatment and effect future relapse occurrences (Chang, Howe, Gallelli, & Miklowitz, 2006, as cited in Apps et al., 2008).
Nurses must prepare teachers about what to expect from children with bipolar disorder, educate them on mental illness, and observe the classroom if a teacher notices specific disrupting behaviors (Olson & Pacheco, 2005). There may be instances when a child is at risk for suicide so it is important for the nurse to work together with Emergency Medical Services for the safety of the child (Olson & Pacheco). Supplying a list of websites or books that could be accessed within the community allows the family to learn more about the disorder (Apps et al., 2008). Organizing with several interdisciplinary teams and the community, nurses can inform caregivers of resources they may benefit from. This nursing intervention plan will assist in the development of the primary caregiver’s knowledge of the bipolar disorder their child suffers from and provide recommendations of where to seek additional support.
Bipolar disorder is a challenging disease that directly affects the primary care provider’s ability to give necessary child care. The expected nursing outcome is that family members will be educated on the disorder and receive positive assistance for their child. A variance hindering the outcome is that primary caregivers do not have appropriate resources and education to give the upmost care to their child. Nursing interventions can help by educating the caregivers of the disorder and informing them of treatments, encouraging the use of support systems, and collaborating with multiple healthcare and community resources. Nurses are called to help others who are in need and these interventions can make a large impact in the lives of family members who then can enhance the life of a child with bipolar disorder.
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