The Mental Hurdles of Parenting Children with Disabilities and Chronic Illness

Parenthood can often be said to be one of the hardest endeavors of a person’s lifetime. There is no user manual or how-to-guide to steer matters in the right direction when things go wrong as a parent. Perhaps one of the most difficult situations a parent can be put in is guiding their child through a disability or chronic illness. While addressing the needs of the child, it is not unusual for the affected guardians to be neglected. Mental health has been increasingly taking the stage as being a crucial part of a healthy life. The number of children diagnosed with chronic illnesses and disabilities has risen over the past fifty years, which only raises additional concerns about this largely unspoken issue (Perrin, 2014). The increasing stress and emotional toll of not only witnessing your child go through the tribulation of disease, but also constantly having to provide as their caretakers can come with a physical and mental cost. 

First, stressful situations spur neurological changes in people. There is a clear distinction to be made between momentary moments of stress and chronic stress. Many parents of children with illnesses and disabilities find themselves living with the constant additional pain and suffering which can begin to aggregate. This kind of response is in sharp contrast to the adrenaline that kicks in for a test or before a recital. Instead, this type of stress is characterized as chronic immobilization stress or CIS. This intense version of stress has been also been coined “toxic stress” as noted in a journal by McEwen in 2017. According to Vyas in 2002, chronic immobilization stress induces dendritic atrophy and debranching in CA3 pyramidal neurons of the hippocampus. Yet, the medial amygdala shows shrinking of dendrites. These alterations have been associated with increased anxiety (McEwen, 2017). In addition, there are a plethora of other observed abnormalities that are associated with chronic stress such as vulnerability to disease. Chronic stressors can wear down the body, particularly the cardiovascular, immune, and gastrointestinal systems in the context of parents with illness afflicted children (Miodrag, 2010). The existing knowledge on strange neural malformations from stress coupled with the information on parent mental health paints a clearer and concerning narrative. 

Figure 1. Current views on the relationship of long-lasting neuroendocrine activity (purple line) with the hypothalamic-pituitary-adrenal axis activity shows how harmful stress is in comparison to older Selye’s general adaption syndrome (blue line)

Furthermore, the emotional connection between family members produces unique neural responses. The strongest emotional connections are often witnessed in mothers. This is largely due to hormonal changes that are present in both parents, but particularly stronger in mothers because of oxytocin. Strong maternal connections often manifest in the synchrony of a mother with their child (Feldman, 2007). However, when this maternal connection is affected it can lead to adverse side effects. It is found that maternal depression was common with flat affect and lack of a maternal connection (Feldman, 2007). This may explain why depression and anxiety are found at higher rates among parents of children with difficult situations. It was found that maternal well-being in particular was closely linked to having children with autism (Alik, 2006). Moreover, both parents of children with chronic illness had a much lower Higher Related Quality of Life (HRQ) based on surveys of families with chronically ill children (Hatzmann, 2008). 

The adverse stress placed on parents varies for a multitude of health conditions, but the need for family focused pediatric care remains consistent. Due to the level of care and attention to certain illnesses and disabilities the level of stress can vary. For instance, in a study done between a sample of children with asthma and a sample with epilepsy, the parents of children with epilepsy had higher rates of stress (Chiou, 2008). This finding in particular demonstrates that the more unexpected and demanding treatment of a condition is, the more challenging it will be for the parents involved. Nevertheless, it remains that increased rates of certain illnesses and developmental disorders influence adverse effects that chronic stressors may have on parental health. The diseases could vary from milder conditions such as asthma to developmental conditions such as Down Syndrome. Yet, according to Eccleston, there is evidence that the beneficial effects of treatment can be maintained at follow‐up for diabetes‐related symptoms in children, and for the mental health of parents of children with cancer and parents who received problem solving therapy (PST).

Figure 2. Across various developmental and chronic disorders in pediatric cases the quality of life of parents in categories of depression, social functioning, daily activities, and positive emotions vary wildly, but remain concerning in respect to averages (black lines)

Ultimately, concerns surrounding parental mental health are becoming more vital than ever. This necessitates discourse and treatment that is inclusive of the whole family in addition to the patient. Illness and disability in a child is noticeably linked to chronic stress in parents that affects their neurological responses and their quality of life. Depression and anxiety for the parent are strongly associated regardless of the condition their child is afflicted with. Thus, it is imperative to be recognize that the health status of children can have critical impacts on their parents’ health as well. 

Edited by Anjanay Nangia

References

Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger Syndrome or High-Functioning Autism. Health and quality of life outcomes, 4, 1. https://doi.org/10.1186/1477-7525-4-1

Chiou, H. H., & Hsieh, L. P. (2008). Parenting stress in parents of children with epilepsy and asthma. Journal of child neurology, 23(3), 301–306. https://doi.org/10.1177/088307380730871

Eccleston, C., Fisher, E., Law, E., Bartlett, J., & Palermo, T. M. (2015). Psychological interventions for parents of children and adolescents with chronic illness. The Cochrane database of systematic reviews, 4(4), CD009660. https://doi.org/10.1002/14651858.CD009660.pub3

Feldman, R. (2007). Parent-Infant Synchrony: Biological Foundations and Developmental Outcomes. Current Directions in Psychological Science, 16(6), 340–345. http://www.jstor.org/stable/20183232 

Hatzmann, J., Heymans, H. S., Ferrer-i-Carbonell, A., van Praag, B. M., & Grootenhuis, M. A. (2008). Hidden consequences of success in pediatrics: parental health-related quality of life–results from the Care Project. Pediatrics, 122(5), e1030–e1038. https://doi.org/10.1542/peds.2008-0582 

McEwen B. S. (2017). Neurobiological and Systemic Effects of Chronic Stress. Chronic stress (Thousand Oaks, Calif.), 1, 2470547017692328. https://doi.org/10.1177/2470547017692328

Miodrag, N., & Hodapp, R. M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current opinion in psychiatry, 23(5), 407–411. https://doi.org/10.1097/YCO.0b013e32833a8796 

Perrin, J. M., Anderson, L. E., & Jeanne V.C. (2014). The Rise In Chronic Conditions Among Infants, Children, And Youth Can Be Met With Continued Health System Innovations | Health Affairs. Health Affairs. Retrieved from https://www.healthaffairs.org/doi/10.1377/hlthaff. 2014.0832 

Vyas, A., Mitra, R., Shankaranarayana Rao, B. S., & Chattarji, S. (2002). Chronic stress induces contrasting patterns of dendritic remodeling in hippocampal and amygdaloid neurons. The Journal of neuroscience : the official journal of the Society for Neuroscience, 22(15), 6810–6818. https://doi.org/10.1523/JNEUROSCI.22-15-06810.2002

Image Citations

Kim, E. J., Pellman, B., & Kim, J. J. (2015). Stress effects on the hippocampus: a critical review.Learning & memory (Cold Spring Harbor, N.Y.), 22(9), 411–416. https://doi.org/10.1101/lm.037291.114 

Hatzmann, J., Heymans, H. S., Ferrer-i-Carbonell, A., van Praag, B. M., & Grootenhuis, M. A. (2008). Hidden consequences of success in pediatrics: parental health-related quality of life–results from the Care Project. Pediatrics, 122(5), e1030–e1038. https://doi.org/10.1542/peds.2008-0582 

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