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Everyday, countless individuals’ lives are changing with the diagnoses of chronic health conditions. These conditions can vary from heart disease to diabetes to cancer and everything in between. Consequently, family members are often thrust into the role of primary caregiver to help their loved one. This role transition can severely shift family dynamics and add new stressors to the already precarious situation. The purpose of this paper is to examine the effects a congenital birth defect of a child has had on the primary caregiver. It will also discuss details regarding the scenario of the caregiver and family member, a summarization of the birth defect, caregiver stresses and coping mechanisms, how caregivers act as advocates, resources available to caregivers, key healthcare personnel, and advocating for the caregiver.
Scenario of Caregiver
The caregiver of this scenario is a 26-year-old mother of two young boys. Her youngest boy was diagnosed with a clubfoot at her 16-week ultrasound. Since his birth in March 2016, he has had multiple treatments to correct the deformity, including casting, immobilizing, and numerous surgeries. The caregiver is married and also has a 6-year-old boy who just started kindergarten. Her husband travels frequently for work and she is often left alone as the sole caregiver. In addition to the responsibility of running a household, she babysits three other children all day throughout the summer and after school during the school year. She also takes online classes herself to earn her degree in marriage and family therapy.
The interview of the caregiver was conducted on Saturday, November 3rd, 2018. It took place at the caregiver’s home and lasted approximately one hour. The overall feeling of the interview in the beginning was somewhat somber and hesitant, but ended with relief and hopefulness.
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Summarization of Chronic Health Condition
Congenital talipes equinovarus, also known as clubfoot, is one of the most common congenital birth defects of the lower extremity. It is a deformity of the bones of the foot and ankle as well as a shortening of the Achilles tendon. It is twice as prevalent in males versus females and affects approximately 1 in every 1000 births in the United States (Balasankar, Luximon, & Al-Jumaily, 2016). Although there are no definitive causes of clubfoot, genetics, fetal position in the womb, anatomical abnormalities, and vascular issues can all contribute to the development of the defect. Conservative treatment options seek to correct the deformity without the need for surgery. The most popular non-surgical management is the Ponseti method, which consists of “weekly gentle manipulation followed by application of serial long leg casting” (Balasankar et al., 2016, p. 261). If adequate correction cannot be achieved by conservative methods, surgical intervention may be necessary.
According to Fulton, Briggs, Silva, and Szalay (2015), calf circumference is directly related to future functionality of patients with clubfoot. A study performed to compare the difference between calf sizes in children who had undergone surgical correction of their clubfoot and those who had been treated only with conservative methods, showed a significantly smaller circumference in the surgical group. Because the family member in the scenario of focus has undergone multiple surgeries, the muscles of his lower leg in the affected extremity are drastically atrophied compared to the unaffected extremity.
Caregiver Stresses and Coping Mechanisms
Frey and Ferguson (2016) define caregiver as, “a person who has responsibility for meeting the physical and psychological needs of an infant, child, or dependent adult” (para. 1). Caregivers often encounter many stresses and burdens due to their demanding role. Risk factors for caregiver burnout include female gender, living with the dependent individual, financial instability, depression, increased time spent with the patient, having no choice in the matter, and lack of personal outlets (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014). The caregiver in the current scenario identifies with many of these risk factors including being a woman, living with her child, having no choice, and lack of personal outlets.
Coping mechanisms are vital to conserving the mental and emotional wellbeing of caregivers, especially concerning parents of children with disabilities. As Gull (2014) describes, many couples differ in their ability to accept and deal with the limitations of their child, which can ultimately lead to marital strife. The primary caregiver in the situation at hand described the differences between her and her husband’s coping strategies. Her husband has not reached acceptance in terms of their son’s disability. Because he is still angry about the situation, he has a hard time dealing with the restrictions of his child. His current coping mechanism is to distance himself from the family and bury himself in his work. She, on the other hand, has accepted the reality of their situation and tries to make the best of it. The main coping mechanism she utilizes is the maintenance of positive thoughts. Although she understands the seriousness of the child’s diagnosis, she prefers to look at the glass as half full.
Caregiver as Advocate
“Advocates defend patients’ rights and interests and assure the safety of those who can’t advocate for themselves” (Gerber, 2018, p. 56). Because the family member in this scenario is a child in addition to having a disability, the caregiver must constantly advocate for him. For example, one of the primary ways the caregiver described her acting as an advocate was when she sought a second opinion due to the initial physician’s recommendations for treatment not coinciding with what she had researched. Seeking accurate information regarding her son’s diagnosis and treatment is also a way in which she advocated for him.
Resources for the Caregiver
Aside from a few pamphlets about clubfoot, the caregiver has not been offered many resources by her son’s healthcare team. There is a care manager assigned to his case, but this individual mostly deals with insurance approvals and scheduling appointments. A resource provided to the caregiver is the Utah Parent Center. This non-profit training and information center located in Salt Lake City, Utah has created a collaborative network to bring together vital components to aid with the care of disabled Utah children. These components include school districts as well as health and government agencies. Their website provides information on recreational activities for disabled children, ways to deal with bullying, ideas on explanation of child’s disability to siblings, and much more (Utah Parent Training and Information Center, n.d.).
Clubfoot Cares is a national advocacy group started by parents of children diagnosed with clubfoot. This group consists of parent, patient, medical, and professional advisory boards. It seeks to raise awareness for clubfoot and advocate for the use of the Ponseti method as the primary treatment modality for clubfoot. In addition to providing information and recommendations regarding the disorder, Clubfoot Cares also introduced a clubfoot boot exchange in order to provide boots to children whose families cannot afford to purchase them (Clubfoot Cares, 2017). Peer support is an important intervention for the parents of disabled children; the shared experiences can provide comfort that no other resource can (Shilling, Bailey, Logan, & Morris, 2015). The caregiver was grateful for the suggestions and expressed interest in visiting the online resources in the near future.
Key Healthcare Personnel
The key healthcare personnel involved with the caregiver and her child has mainly been the orthopedic surgeon and the nurses on staff at the hospital. The case manager has also played a minor role as mentioned previously. The caregiver expressed gratitude for the current physician. She described how previous doctors had operated blindly and ignored her when she discussed her uncertainty with treatment plans. Contrarily, according to the caregiver, the child’s current physician takes the time to explain why certain treatment options are being considered and allows opportunity for questions. The caregiver explained that the doctor is more empathetic to the caregiver and her situation and that the caregiver really feels “heard” when she attends appointments. Additionally, after the most recent operation, contact information was provided for a nurse available at any time of the day or night with questions or concerns regarding the recovery process. The caregiver voiced her appreciation for these healthcare professionals.
In addition to the physicians and nurses that are involved in this case, there may be other healthcare personnel involved. They may include an occupational therapist, physical therapist, recreational therapist, or aid. Physical and recreational therapists may work with the patient in performing exercises and stretches that will help increase or maintain strength and flexibility of the affected extremity. The occupational therapist and aid may assist the patient in finding ways to adapt to everyday life and increase independence when appropriate.
How I Advocated for the Caregiver
I advocated for the caregiver in this scenario by taking the time to discuss what challenges and burdens she may be facing with the disability of her child. I allowed her to express her thoughts and feelings regarding the diagnosis as well as her coping mechanisms in dealing with her new reality. I also encouraged the caregiver to speak up and ask for help when she is feeling overwhelmed with her responsibilities. Providing additional resources and educational materials is also an example of how I advocated for this caregiver.
It is important for members of the healthcare community to recognize the change in family dynamics a diagnosis with a chronic health condition can cause. Caregivers often give so much of themselves that their mental health can begin to suffer. Recognizing the potential for caregiver burnout in each scenario is crucial. Realizing that caregivers act as advocates, but that they themselves should also be advocated for, is vital to the holistic care of the entire family.
