Cerebral palsy (CP) is an umbrella term for a group of permanent movement and posture development disorders caused by disturbances in the fetal or infant brain (London et al., 2014). Children with CP experience activity, sensory, perceptual, cognitive, communicative, and behavioral problems. Prognosis depends on the level of developmental delay, and often, children need assistance with mobility and activities of daily living, such as bathing and feeding. In addition, those with CP require therapies such as physical, speech, and occupational, along with multiple medications and surgeries to improve function. Parents and families of children with CP must adjust their lives to care for the various needs of this chronic condition. Children with CP are dependent for life, and parents either take on the task alone or use resources such as home health nursing or prescribed pediatric extended care (PPEC).
The Centers for Disease Control (CDC) state that the estimated cost of lifetime care for someone with CP is almost $1 million (2020). The CDC also points out that medical costs for children with CP are ten times higher than those without CP (2020). Kamaralzaman et al. highlight four types of expenses families incur when caring for children with CP, and not all of them are covered by health insurances (2018). First, direct healthcare costs include rehabilitation services, medicine, diagnostic tests, consultation, and surgery fees, which amount to the “highest-burden” of all types (Kamaralzaman et al., 2018). Direct non-healthcare costs include transportation and accommodation costs. Third, development costs include nursing aids, special education, dietary supplements like formulas, gastric tubes, feeding pumps, daily necessities like diapers, wet tissues, and special lotions and soaps. Finally, indirect costs for parent and child and total productivity loss when parents take unpaid leave or resign from their jobs to care for their child.
The economic impact of family caregiving for individuals with CP takes a toll on family resources over time. If parents do not have stellar health insurance, many of the costs mentioned are paid out of pocket. As children age and turn 18 years old, they lose the benefits they received as children and must transfer services to adult facilities and insurance programs. Mothers of children with CP have poorer mental health and physical outcomes than mothers of children who do not (Shih et al., 2018). From personal experience, parents of children with CP that I have cared for express those concerns. They state that they feel “exhausted,” “burnt-out,” and “struggling” to find resources for themselves and their children. Over time, caregiving becomes physically challenging as the child grows, and some parents express that “it was easier when they were a baby, but now [the child] weighs more than me.” Costs do not decrease over time, and adults with CP still have higher medical and out-of-pocket expenses than those without CP (Whitney et al., 2019).
A chronic illness represents a long-lasting mental or physical disorder that necessitates constant treatment or monitoring and causes functional restrictions. Chronic diseases constitute the United States’ costliest and prevalent health conditions, and approximately half of all Americans have at least one chronic illness (Raghupathi & Raghupathi, 2018). Among the common chronic illnesses is chronic kidney disease (CKD), involving a compromise of the normal blood-filtering process by the kidneys. Universally, CKD has approximate mortality of 1.2 million and a prevalence of 13.4%, with the primary cause of death being complete kidney damage extending to 4 months (Kakitapalli et al., 2020). Cost to U.S. health plans increases exponentially with each CKD stage progression, with ESRD costs being even higher. According to the CDC (2021), nearly 15% of U.S. adults with CKD get early cardiovascular disease and kidney failure without proper treatment. With the development of treatment complications for patients with CKD, understanding family caregiving and related economic impacts for adults is vital.
CDC (2021) remarks that CKD surmounts to 7% in claims costs paid to Medicare, or $80,000 per person, or total Medicare spending (excluding prescription drugs) of $36.6 billion in 2018. Besides, the management of CKD poses a significant financial burden for households and patients through out-of-pocket expenditure that challenges supportive care. CKD accounts for increased family caregiving costs associated with accessing assistive devices, home dialysis setups, illness-related home modifications, home-care assistance, and transport (Gilbertson et al., 2019). Other cost-related burdens for family caregiving correlate to self-management in households experiencing financial distress and economic hardships. The family caregiving burden is high with CKD given its societal implications on patients, such as their inability to work that proliferates estimated disability insurance costs and reduced household productivity. A large percentage of patients also seek therapeutic care out-of-pocket. In this case, the burden falls to family members and caregivers who step in to help with CKD’s worrisome treatment side effects and comorbidities.
Concerning the overall economic impacts of CKD, minority communities may have less access to healthcare which places them with higher treatment costs and fewer resources for care. Studies found that one-third of Hispanics, 20% of African Americans, and 1 out of 3 American Indians were uninsured (National Kidney Foundation, 2021). CKD costs impacting family caregiving for adults may include outpatient expenses and annualized costs per patient for Medicare. The National Kidney Foundation (2021) illustrated a 2.4-times higher Medicare spending for kidney failure with replacement therapy (KFRT) patients in 2018. CKD warrants extreme care involving appointments, especially if dialysis is incorporated to treat kidney failure. The task is overwhelming for primary caregivers, especially when they have no one to help them financially. The increased disease complications and related economic impacts on family caregiving warrant additional interventions to mitigate its progression to later years of development or adulthood. Disease management will improve if family members and family-focused nurses can access significant resources for disease management and effective delivery of intense therapies through financial support.
Response 1: Cerebral palsy (CP) is an umbrella term for a group of permanent mov
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