Cerebral palsy is among the most widespread physical disabilities affecting millions of children and adults around the world. Nevertheless, in the United States, the overall incidence of the disease is relatively low, with the chances of having a child diagnosed with it being less than 1% (1 in 345) (CDC, 2022). Despite the low rate of occurrence, the overall number of babies diagnosed with it remains high, as around 10,000 newborns in the country get the diagnosis, which makes it the common cause of disability (CDC, 2022). Supporting and empowering parents of children with such a diagnosis is one of the components of family-centered sensitive care. Chronic sorrow is among the challenges that such parents experience as it describes the long-term periodic sadness that the caregivers of chronically ill individuals face (Batchelor, 2017). Through the application of the nursing Theory of Chronic Sorrow, nurses can provide adequate care and support families through the losses that result from having to care for children with cerebral palsy.
Theory of Chronic Sorrow
Chronic sorrow is defined as persistent presence of severe sadness or other feelings that individuals experience due to significant loss. The Theory of Chronic Sorrow was first developed in 1998 by Georgene Gaskill Eakes, Mary Lermann Burke, and Margaret A. Hainswort (Gordon, 2009). It is considered a middle-range nursing theory that explains the persistent negative emotions that result from dealing with illness, debilitating conditions, and death. The theory offers a framework that nurses employ when working with families that experience or have experienced an ongoing or single loss (Gordon, 2009). The framework includes such assumptions as antecedents, triggering events, as well as internal and external methods of management. In addition, the theory includes considerations of disparity and loss as related to critically ill individuals.
Within the model, disparity represents the gap between the ideal and the actual situation due to dealing with loss. The first antecedent of the theory occurs when a single event of a living loss is experienced. For example, parents learning that their child has cerebral palsy is the first antecedent within the theory. The second antecedent to chronic sorrow is the unaddressed disparity that take place when a person is dealing with loss. Families or individuals who deal with chronic sorrow may experience triggers, which are events causing the recognition of a negative disparity in the disabled family member (Gordon, 2009). Finally, internal methods of management include individual-specific coping strategies in which a person experiencing chronic sorrow engages. External methods of management represent solutions that medical providers develop to facilitate successful coping mechanisms.
Application of Theory
Parents of children diagnosed with cerebral palsy encounter different persistent stressors that can adversely impact their psychological and physical health as well as financial well-being. The neuromuscular effects and complex comorbidities linked to cerebral palsy result in most children having several medical needs and dependency on their caretakers (Sadowska et al., 2020). When applying the theory, nurses should analyze the stressors that parents experience, especially the presence chronic sorrow, in order to provide relevant interventions for alleviating the burden of the problem.
Internal and external coping interventions can include engaging in their personal life activities, looking for opportunities to rest and recharge, looking for varied information helping to cope with loss experiences, and normalizing new reality. When dealing with parents experiencing chronic sorrow, nurses should help them redefine and adapt to a new form of caring, which is a coping strategy in itself (Nordlund, 2023). It is common for families to incorporate the exacerbation of disease into family life to find a new sense of routine for both the patient and their caretakers (Batchelor & Duke, 2019). Therefore, a new norm is created when the family system is disrupted by new challenges and the need to seek new behaviors to adjust to what becomes a new norm.
It is common for parents with chronically ill children to feel like there is no hope for them, with their expressions of optimism being interpreted as maladaptive. Therefore, it is the responsibility of nurses working with such parents to develop a conscious understanding of the experience that entails living with a child with a disability as one that significantly depends on the person. In some instances, parents may feel severe emotional pain, while in others, they feel hope and optimism. Professional approaches to dealing with chronic sorrow can include encouraging and allowing parents to express their negative emotions in situations that are difficult for them to handle (Olwit et al., 2018). At the same time, nurses should act as parents’ advocates and supporters who offer positive feedback on how parents handle the situations. Healthcare providers should encourage parents to vent their feelings if necessary and show empathy and tactfulness.
Implications to Practice
Nurses play essential parts in helping parents address chronic sorrow by providing internal and external interventions of coping. Individualized management methods are effective when parents learn how to handle the emotional and mental stress associated with caring for children with cerebral palsy. An example of internal management methods includes parents reading literature regarding their children’s condition for preparing themselves for the expectations and challenges of child-rearing. Other examples include engagement in stress-alleviating practices, which may include journaling, exercising, or meditating, as well as looking for social interactions with other parents with similar experiences.
External methods of managing chronic sorrow are those initiated by healthcare providers to facilitate coping. For example, parents may be referred to professional counselors or prescribed to undergo a pharmaceutical intervention to address the adverse symptoms associated with caring for chronically ill children, such as anxiety, insomnia, or depression (Gordon, 2009). Nurses will likely recommend parents seek spiritual support to help them with grieving and provide guidance on services that can alleviate the financial burdens, such as government programs and social services. Overall, educating and providing parents with as many resources as possible is necessary for them to feel supported on their journey of caring for their chronically ill children.
Conclusion
Today, there is no cure for cerebral palsy, while the therapeutic needs of children diagnosed with the condition are complex and multi-dimensional. The application of the Theory of Chronic Sorrow intends to relieve many burdens linked to caring for such children by providing a framework that parents can follow in their everyday lives to cope with stressors. Through implementing both internal and external methods of management, parents can find the most suitable coping mechanisms and find joy in what they do despite the challenges along the way. It is necessary that nurses see chronic sorrow as a normal reaction of some parents and provide support through engaging in positive strategies that boost their comfort.
References
Batchelor, L. L. (2017). “The lived experiences of parents with chronic sorrow who are caring for children with a chronic medical condition.” Nursing Theses and Dissertations, Paper 78. Web.
Batchelor, L., & Duke, G. (2019). Chronic sorrow in parents with chronically ill children. Pediatric Nursing, 45(4), 163–178.
CDC. (2022). 11 things to know about cerebral palsy. Web.
Gordon J. (2009). An evidence-based approach for supporting parents experiencing chronic sorrow. Pediatric Nursing, 35(2), 115–119.
Nordlund, R. M. (2023). Chronic sorrow and the impact on parents of children with disabilities. Electronic Theses, Projects, and Dissertations. 1569. Web.
Olwit, C., Mugaba, M., Osingada, C. P., & Nabirye, R. C. (2018). Existence, triggers, and coping with chronic sorrow: A qualitative study of caretakers of children with sickle cell disease in a National Referral Hospital in Kampala, Uganda. BMC Psychology, 6(50). Web.
Sadowska, M., Sarecka-Hujar, B., & Kopyta, I. (2020). Cerebral palsy: Current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatric Disease and Treatment, 16, 1505–1518. Web.