Introduction
Cerebral palsy refers to disorders affecting balance, movement, and muscle tone caused by abnormal brain development or damage to the developing brain. This diagnosis often occurs in early childhood. Families with a child diagnosed with cerebral palsy undergo great emotional upheaval trying to understand the causes, implications of the diagnosis, and best ways to manage their child’s needs. The theory of chronic sorrow recognizes the ongoing periodic sadness experienced by families related to the diagnosis, which may resurface during milestones or medical events throughout the child’s life. As a case manager for a newly diagnosed child, appreciation of chronic sorrow allows for greater empathy and identification of appropriate physical, developmental, and emotional support for families as they raise a child with cerebral palsy.
Analysis and Background of Chronic Sorrow Theory
Chronic sorrow theory was developed by Dr. Susan Roos in 2002 based on findings from her qualitative research involving interviews with families of children with disabilities. Her theory was built upon earlier stage-based models of grief, which viewed grief linearly over time, eventually leading to recovery or acceptance. She found through analyzing interviews that parents and families experienced periodic intense sadness and grief throughout their child’s life related to their diagnosis rather than following neat linear stages. Often, during meaningful events or milestones connected to expectations parents held before the diagnosis, feelings of loss and sadness would resurface (Jens C. Thimm et al., 2020). Her seminal research coined “chronic sorrow” as the periodic recurrence of permanent, pervasive sadness or grief related to a significant loss.
Though initially focused on families of children with disabilities, the chronic sorrow theory has been applied more broadly to capture grief experiences related to varieties of losses, including chronic illness, caregiving burden, and unresolved grief. The theory recognizes that individuals re-experience sadness tied to meaningful reminders of what has been lost periodically throughout their lives, depending on personal or situational triggers. Understanding chronic sorrow involves appreciating the cyclical nature of grief, primarily related to losses that persist over time where reminders are frequent, such as having a child with special needs (Walden et al., 2020). The theory emphasizes that periods of happiness occur between grief episodes rather than the individual remaining permanently in a grief state. Identifying factors that influence when feelings surface guides supportive planning.
Application of Chronic Sorrow Theory
Appreciating chronic sorrow provides a meaningful framework for me as a case manager developing comprehensive support plans for families I work with managing a child’s cerebral palsy diagnosis. Recognizing that grief occurs episodically through triggering events allows me to normalize periods of acute sadness for families and provide counseling or connections to support groups, specifically during these meaningful times. For the family I am working with who recently received a diagnosis for their young child, I would expect periods of intense grieving during hospitalizations when the implications of their child’s needs become more apparent (Rizky, 2023). I would also anticipate potential grief during milestones like watching their child’s peers meet early motor and language development stages that their child cannot. Positive moments, such as a child’s first words or steps, may elicit sadness over the diagnosis and associated challenges.
Having open discussions about the mixture and fluid nature of emotions families experience following a child’s diagnosis promotes greater understanding, validation, and acceptance among providers as well as all family members. Explaining why acute sadness comes upon them in episodes or waves is better embraced when viewed through a lens such as chronic sorrow that honors the intermittent nature of emotions over time. These shared experiences help normalize periodic intense grief, making families feel less alone and isolated in their suffering (Fernandes et al., 2021). Referring families to counseling resources either individually, as a couple, or through a family guides moving constructively through periods of acute grief as well when intensified episodes do come their way. The chronic sorrow theory reassures families that moments and even extended phases of happiness do still occur amidst the lifelong adventure of raising a child with special needs.
Implications for Practice
Recognizing that grief persists cyclically for families managing a child’s diagnosis has profound implications for nursing practice by uncovering grieving processes that go overlooked and identifying ways nurses can encourage healthy coping mechanisms. Often, in healthcare settings, the bulk of attention gets placed on physical care plans, symptom management, and measurable outcome improvements for the child (Moore et al., 2020). However, the theory of chronic sorrow emphasizes that despite the best medical care, ongoing waves of grief still profoundly impact families and children due to the permanent losses and changes that the disability diagnosis causes to hopes, expectations, and ideals.
Making space to understand the profound emotional journeys families experience through interviews and open conversations provides opportunities for nurses to establish compassionate, trusting relationships with families, which are vital supports when complicated feelings eventually surface. When acute grief episodes occur, nurses can then recommend counseling, local support groups, online forums, or other grief resources tailored to meet that family’s needs at that moment. Education for nurses on chronic sorrow theory enhances their ability to assess for emotional health triggers during appointments and refer families to additional backing when warranted.
Education for nurses on chronic sorrow creates an understanding of grief’s fluid nature, allowing for whole-person, family-centered care. With training, nurses can develop skills to explore emotional health and assess grief triggers with families during appointments instead of limiting conversations to strictly medical status. Chronic sorrow recognition enhances social determinants of health screening as well. This improves rapport between health providers and families managing a child’s needs (Bryant et al., 2020). Overall, the theory increases practitioner appreciation for the cyclical emotional journey of raising a child with special needs, allowing services to address physical, developmental, and emotional aspects compassionately.
Conclusion
Cerebral palsy’s implications emerge over time for families who receive this diagnosis for their child. Expectations and hopes preset a foundation where sadness resurfaces periodically during meaningful events or milestones highlighting difference or loss. Chronic sorrow theory explains grief’s repeating reality guiding supportive planning. As a case manager aware of chronic sorrow’s episodic nature, I can help newly diagnosed families access counseling during acute periods, connect with similar families, and still focus on happiness occurring between grief episodes. My role involves validating the wave-like emotional journey while providing tailored services addressing physical, developmental, and emotional needs as they arise. Comprehensive support manages present challenges, allowing families space to enjoy their children. The theory of chronic sorrow supplies a meaningful framework for appreciating families’ experiences that, when applied through compassionate care resources, can assist with navigating both positives and difficulties over the lifelong journey.
References
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Rizky, R. G. (2023). Chronic Sorrow Family Caregiver Of Clients With Schizophrenia In The Work Area Of Parongpong Public Health Center, West Bandung Regency. INDONESIAN NURSING JOURNAL of EDUCATION and CLINIC (INJEC), 8(1), 47–57. https://doi.org/10.24990/injec.v8i1.535
Walden, M., Elliott, E. “Charley”, Ghrayeb, A., Lovenstein, A., Ramick, A., Adams, G., Fairchild, B., & Schreck, B. (2020). And the Beat Goes On: Heartbeat Recordings through Music Therapy for Parents of Children with Progressive Neurodegenerative Illnesses. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2020.0447
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