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Family Caregivers of Children with Disabilities: Stress is Real (Part 1)

Updated: Jan 7, 2023

Make no mistake, having a child with an intellectual and developmental disability (IDD) can bring unexpected joy. It can also strengthen family bonds, faith and altruistic aspirations.


On the other hand, it can cause additional stress that is decidedly life-altering. For my wife and me, a poignant moment happened when she stopped feeling our daughter move in her tummy for nearly 24 hours. It was one day during her second trimester but unlike other days that came before it. It came at a time when my wife felt overwhelming emotions while processing the news that our first (and only) child may be born with a disability. It was a revelation about how emotional grief could radically compromise our physical health. It was a watershed moment that changed our perspective about stress.


Stress is Insidious


When confronted with a challenge or uncertainty, stress is a natural—and necessary—response. It gets a bad rap when it’s cumulative, and justifiably so. Stress that is sustained over time can cause harmful physiologic effects due to adrenergic overdrive and chronic inflammation.


As more children with IDD receive care at home (compared to older times when institutional care was the norm), more family caregivers experience stress. Informal or unpaid caregiving is now the largest source of long-term services in the US. After our daughter’s birth, stress sneaked in during circumstances predictable and unforeseen. It made itself felt through breastfeeding difficulties, open heart surgery, and hours upon hours of therapies. With the fear of COVID-19 looming over us, my wife and I did not get relief from neither family nor paid help for nearly half a year.


Caregiver stress is the degree by which a caregiver—parent, grandparent, sibling, relative or friend—experiences emotional, mental, physical or financial strain while providing care. Thus, its perception can change based on an individual’s stress threshold, coping mechanism, social support and familial/cultural values. It can range from a sense of mild burden to caregiver burnout when emotional exhaustion is reached—and any sense of purpose is diminished. The danger with caregiver stress is that it gains a foothold in daily life stealthily. Often shrouded by obligation to family, it hides behind the caregiver’s denial until it starts creating health problems.


Effects on Health


It is hard to manage caregiver stress without first learning how to recognize it. Take a moment and ask yourself if you have experienced any of these manifestations of the following:


· General ill health and fatigue

· Physical pain (e.g. musculoskeletal pain, headaches)

· Sleep problems

· Gastrointestinal symptoms (e.g. nausea, vomiting, abdominal pain)

· Irritability, mood swings, chronic anger

· Anxiety

· Depression and apathy


There is growing evidence that compared to parents of neurotypical children, parents of school-age and older children with IDD experience higher rates of depressive symptoms. Depression in parents has been linked to disengaged parenting behaviors that consequently result in further developmental delays in children.


Are You at High(er) Risk?


For parent caregivers, studies have shown that marital disagreements are directly related to burnout. This finding supports the value of mutual cooperation between parents in successfully caring for a child with IDD.


If you have one or several of these characteristics below, you are more likely to experience caregiver stress:


· Female sex

· Lower level of education

· Social isolation

· Poor coping strategies (e.g. denial, helplessness, constant need for control)

· Financial strain

· Inability to continue regular employment


Children who have more medical complications (e.g. tracheostomies, catheters, assistive devices) require more intensive and stressful care. Childhood conditions that are a diagnostic challenge confer higher levels of stress to parents, compared to disabilities that are diagnosed with objective tests such as chromosomal disorders. For instance, parents of children with autism spectrum disorder (ASD) tend to experience more stress and pessimism compared to parents of children with Down syndrome. Their frustration stems from the delay in diagnosis (usually several years), long diagnostic process and inadequate referrals for support services. These findings mirror the experience of parents I have met who have expressed multiple stressors in raising a child with ASD, including a nagging fear of a similar diagnosis in their other children.


As children with IDD go through school age and adulthood, parents encounter unique and evolving sources of stress like special education, social integration, and independent living, to name a few. An IEP (individualized education program) meeting can be a stressful situation that my wife and I are currently preparing for so we can get our toddler in the most optimal school environment. For the majority of children who need long-term multi-disciplinary therapies, parents also face the burden of evaluating multiple providers, types of therapy services and insurance hurdles.


Lastly, experiencing stigma is common for children with IDD and their families. Other than increased emotional stress, disability stigma is also associated with poorer health and access to services, discrimination and abuse particularly among children who live in developing countries. Even in the US, I still hear people sporadically use the R-word (just Google it) which conveys nothing but hurt and hate. We should spread the word that by virtue of Rosa’s Law passed in 2010, the term “mental retardation” has been removed from federal policy and replaced with “intellectual disability”. Watch the video below to see how the story of Rosa Marcellino, a girl with Down syndrome, helped promote more inclusive language and mindset.


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There’s no better time to take stock of our roles as family caregivers than at the turn of a new year. If you recognize increasing levels of stress, we will take a look at some strategies to reduce caregiver burden in our next blog.



References


1. US Department of Health and Human Services.

2. Masefield, S.C., Prady, S.L., Sheldon, T.A. et al. The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis. Matern Child Health J. 2020;24:561–574.

3. Scherer, Nathaniel, Ibone Verhey, and Hannah Kuper. Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. PloS one. 2019;14.7:e0219888.

4. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver Burden: A Clinical Review. JAMA. 2014;311:1052-1060.

5. Hu C, Kung S, Rummans TA, Clark MM, Lapid MI. Reducing caregiver stress with internet-based interventions: a systematic review of open-label and randomized controlled trials. Journal of the American Medical Informatics Association. 2015;22:e194-209.

6. Gérain P, Zech E. Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Front Psychol. 2019;10:1748.

7. Crane L, Chester JW, Goddard L, Henry LA, Hill E. Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism. 2016;20:153-62.

8. Smythe T, Adelson JD, Polack S. Systematic review of interventions for reducing stigma experienced by children with disabilities and their families in low‐and middle‐income countries: state of the evidence. Tropical Medicine & International Health. 2020;25:508-24.


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