PUH Proposal- Part B

Mental Health Challenges Faced by Caregivers of Children with Disabilities

By Flor Tzaj

INPUT

OUTPUT

Mental Health Challenges Faced by Caregivers of Children with Disabilities

Socioeconomic Status

Chronic Stress

Lack of Self-Care Time

Depression

INPUT 1: Socioeconomic Status

Caring for a child with a disability requires significant financial resources, including medical treatments, adaptive equipment, and emergency expenses. Families with children who have disabilities are more likely to experience financial strain and poverty than those without a child with a disability (L. Parish & M. Cloud, 2006). This economic hardship is further compounded by limited employment opportunities for caregivers. While fathers of children with disabilities generally have similar employment patterns to fathers of children without disabilities, mothers face additional challenges. Many mothers, particularly those who are primary caregivers, struggle to find employment that offers the flexible hours they need, which are not commonly available in most jobs (L. Parish & M. Cloud, 2006). As a result, mothers of children with disabilities are more likely to struggle to find a job, which further exacerbates the family’s financial strain and contributes to increased stress and worry for the caregiver.Low income not only limits caregivers' access to employment opportunities but also impacts their overall quality of life. They must manage daily living expenses—such as food, clothing, and utility bills—while also covering the additional costs of disability-related care. Economic hardship also makes it difficult for caregivers to obtain health insurance, and even when they do have coverage, it often fails to fully address the costs associated with a child's disability, forcing families to pay out-of-pocket for services. In the 2005-2006 National Survey of Children with Special Health Care Needs, 57% of family caregivers of more complex disability condition, reported having health care-related financial issues and 46% reported paying more than $1000 annually in out-of-pocket health care costs (Nelson & Yadrich, 2013). The financial pressures caregivers face have a profound impact on their mental health, especially when they are the primary providers for their families. In summary, the combination of financial strain, limited income, and high disability-related costs can leave caregivers feeling overwhelmed, anxious, and stressed, all of which contribute to a decline in their mental well-being.

INPUT 2: Lack of self-care time

Caregivers of children with disabilities often experience a profound and persistent lack of time, which plays a central role in the deterioration of their mental and physical health. The demands on these caregivers are significantly higher than those of parents with children who do not face similar challenges. Daily routines are consumed not only by the basic needs of parenting but also by the specialized care required for children with disabilities. This care can include managing medical treatments, adhering to therapeutic regimens, and providing constant supervision and emotional support. The types of disabilities—whether physical, psychological, or developmental—can dictate a wide range of care requirements. Caregivers may need to assist with physical tasks like bathing, dressing, or feeding, as well as administer medications, attend frequent medical appointments, or engage in therapeutic exercises (Smith & Chapple, 2024). These responsibilities, when combined with typical household and family duties, place an immense strain on a caregiver’s time and energy, leaving little room for personal care or recovery. This multitasking can lead to burnout, as caregivers struggle to maintain order and routine across various aspects of their lives. In such circumstances, self-care can feel like an impossible luxury. In fact, when caregivers feel overwhelmed, they tend to put their own well-being and needs at the bottom of the priority list (Rudy & Combs, 2024), leaving little to no time for rest, relaxation, or even basic health maintenance such as eating or sleeping. As research has shown, caregivers often neglect their own health and well-being in the face of overwhelming responsibilities. Many report suffering from both physical and mental health issues while simultaneously providing intense care to their child (et al., 2006). The overwhelming lack of time experienced by caregivers of children with disabilities is a major factor contributing to the decline in their mental and physical health.

Output 1: Chronic Stress

As more children with intellectual and developmental disabilities (IDD) are cared for at home—compared to previous generations when institutional care was the norm—family caregivers are facing higher levels of stress (Vivo, 2024). Caregiver stress often occurs when they are unable to adapt to their circumstances, but it can become even more pronounced when daily hassles accumulate, leading to a feeling of being overwhelmed. Stress not only affects caregivers' emotional well-being but also impacts their physical health, leaving them tired and making them less likely to make healthy choices. Another factor that increases the likelihood of stress in caregivers, and complicates their ability to recognize or manage it, is that caregivers of individuals with disabilities are not typically identified as patients by healthcare services. As a result, caregivers often receive little to no evaluation of their own health and well-being (Nelson & Yadrich, 2013). Stress levels are also influenced by social, economic, and time constraints that caregivers face. In 2009, 64% of family caregivers of children with special health care needs reported physical strain, 34% reported high emotional stress, 60% reported a lack of time for other family members and friends, and 27% reported significant financial hardship (Nelson & Yadrich, 2013). These factors contribute to caregivers feeling overwhelmed and stressed on a regular basis, while also worrying about the long-term effects of their caregiving responsibilities. In other words, the stress caregivers experience increases in response to the combined weight of these various pressures. Finally, caregivers who experience prolonged stress may put themselves at higher risk of developing health problems. Research indicates that caregivers with elevated stress levels are at greater risk for cognitive decline, including short-term memory loss, reduced attention span, and a decline in verbal IQ (et al., 2006).

OUTPUT 2: Depression

Studies consistently show that caregivers of children with disabilities experience higher levels of depressive symptoms and mental health challenges compared to their non-caregiving peers ( et al., 2006). Data suggests that 40 to 70% of caregivers exhibit clinically significant symptoms of depression, with approximately one-quarter to one-half meeting the diagnostic criteria for major depression (et al., 2006). Caregivers of children with disabilities—such as epilepsy, physical disabilities, or autism—often find themselves providing more intensive care, which can lead to feelings of isolation. This isolation, combined with the overwhelming demands of caregiving, makes it difficult for many caregivers to foster resilience, hope, or happiness. As they attend to their families day after day, they may feel trapped in a cycle with little or no progress, enduring a depressed state for weeks, months, or even years. As the SGH Department of Psychiatry notes, “Those who suffer from depression, however, remain in a depressed state for much longer”. Symptoms of depression in caregivers often include sleep disturbances, low energy, difficulty concentrating, changes in appetite (overeating or loss of appetite), trouble making decisions, and withdrawal from social interactions. Depression among caregivers tends to worsen when they ignore or suppress their symptoms, or when they feel they have no time to prioritize self-care. In many cases, those around them may view the caregiver’s emotional struggles as a normal aspect of caring for a child with a disability. However, depression has serious long-term effects that can significantly impact a caregiver’s mental and physical health. In fact, depression is one of the most common conditions linked to suicide attempts or thoughts among caregivers, especially those who take care of member with schrizophenia, dementia or cancer ((Lin et al., 2024).

REFERENCES

Chumari, A. (n.d.). Depression: Symptoms and Treatment. HealthXchange. https://www.healthxchange.sg/wellness/mental-health/depression-symptoms-treatment Family Caregiver Alliance, & California’s Caregiver Resource Center. (2006). Caregiver health. Caregiver Health - Family Caregiver Alliance. https://www.caregiver.org/resource/caregiver-health/ Lin, C.-C., Huang, Y.-C., Lee, Y., Lin, P.-Y., Chiu, N.-M., Hung, C.-F., & Wang, L.-J. (2024, July). Suicide risks among caregivers of patients with depressive disorders. The Journal of international medical research. https://pmc.ncbi.nlm.nih.gov/articles/PMC11289805/#:~:text=Depression%20is%20linked%20to%20several,an%20increased%20risk%20of%20suicide.&text=Studies%20have%20reported%20cases%20of,with%20dementia%2C%20schizophrenia%20and%20cancer. L. Parish, S. L. P., & M. Cloud, J. M. C. (2006). Financial Well-Being of Young Children with Disabilities and their Families on JSTOR. www.jstor.org, 51, 223–232. https://www.jstor.org/stable/23721200 Nelson, J., & Yadrich, D. (2013, July). LEND-Family_Caregiver-FACT_SHEET-9-13-13. lend.umn.edu. https://lend.umn.edu/sites/lend.umn.edu/files/2018-11/LEND-Family_Caregiver-FACT_SHEET-9-13-13.pdf Rudy, L. J. (2024, June 5). Special needs parents can find help to manage stress. Verywell Health. https://www.verywellhealth.com/special-needs-parents-stress-help-5323791 Smith, K. (2024, August 26). Parental Burnout from a special needs child. Talkspace. https://www.talkspace.com/blog/special-needs-parent burnout/#:~:text=The%20emotional%20and%20psychological%20impact,parental%20anxiety%20or%20even%20depression. Vivo, R. (2024, July 26). Family caregivers of children with disabilities: Stress is real (part 1). Therapprove. https://therapprove.com/family-caregivers-of-children-with-disabilities-stress-is-real-part-1/