Families with members who have been diagnosed with Autism Spectrum Disorder
(ASD), or intellectual disabilities face a combination of stressors that could potentially lead to
caregivers burnout.
“Parents of individuals with autism spectrum disorders (ASD) often report high levels of stress and mental health problems, associated with the challenges of caring for individuals with complex needs and with navigating multiple service sectors across the life course"
(Weiss, Wingsiong, & Lunsky. 2013).
These various factors fall under four different categories (1) demands, (2) internal capabilities, (3) external resources, and (4) subjective appraisals. These four categories make up the difficulties caregivers may experience.
In the article by Weiss and colleagues, they state that demands consist of the physical and
emotional health of the individual with ASD and those around them such as primary caregivers, siblings, and other family members. For example these demands may come from a change in the health of the individual, or the caregiver falling ill and then having to worry about who will care for their autistic child. In some cases it could be constant and persistent health issues that are a concern for parents will also fall under this category. Aside from health ailments and/or deterioration, other demands include family demands. The need to care for a child with ASD or an intellectual disability is difficult. This will change the dynamic of families and place stress on relationships within the family. It is not uncommon that this is a factor in caregivers burnout.
Internal capabilities refer to both the caregiver and the recipient. This may refer to the
internal coping mechanism of individuals and how they handle tough situations. It may also
outline an individual’s limits or lack of coping mechanisms. Developing mechanisms for coping and managing stress is important to prevent burnout. Additionally, functional impairment would fall under internal capabilities. This could include physical limits where an individual feels unable to care for another thus being unable to fulfill responsibilities real or perceived. For example, a mother feeling so tired that they cannot get out of bed thus being unable to cook, clean, and care for her family thus failing her responsibilities.
External resources are things that may affect an individual’s ability to care for another
and also play a role in burnout. A subcategory of external resources is support. The support of family, friends, services, and even schooling play a role in relieving stress and offering help
when necessary. Other important subcategories are resources and finance. With no resources and finance, caregivers may not receive the support they need thus shouldering more responsibilities than they are capable of handling. The lack of services and options may play a role in stressing out a caregiver. Subjective appraisals may refer to the perception of the caretaker on their status and situation in life. For example, in the study conducted by Weiss, mothers would state their situation is extremely stressful and quite hopeless. Aside from those, there are several emotional states caregivers find themselves in; unable to change their perceptions, thoughts, and feelings.
Mindfulness can reduce stress and help develop coping mechanisms in caregivers.
Self-compassion studies pioneer Dr. Kristin Neff
“self-compassion entails three basic components: (a) self-kindness — extending kindness and understanding to oneself rather than harsh judgment and self-criticism, (b) common humanity — seeing one’s experiences as part of the larger human experience rather than seeing them as separating and isolating, and (c) mindfulness — holding one’s painful thoughts and feelings in balanced awareness rather than over-identifying with them”
(Neff, 2003).
While these things do not seem to have much to do with caregiver burnout, studies on practicing mindfulness in caregivers have encouraged caregivers to become more aware of sources of stress and how to make positive changes in self-care attitudes. In a 2020 study, Singh and colleagues studied the effects of using mindfulness to improve the quality of life for caregivers. The mindfulness program was a three day program teaching various sorts of meditations to be used daily. Caretakers who meditated regularly had a lower perception of stress as opposed to those in the control group. Burnout scores and symptoms of depression also dropped significantly.
On Neff’s website there are various guided meditations individuals can listen to and go
through to reduce stress and anxiety in one’s own life. The guided meditation audios cover
different components of self-compassion. In one of the audios, Neff guides the listeners to think about how they treat their friends during hardships. The audio then invites the listener to picture how it would be if they supported themselves the way they did their friends. Another audio invites the listener to acknowledge their own suffering, that it is okay to suffer as everyone does in life. This appeals to the common humanity notion in which we see events as a part of life instead of isolating themselves in fear and pain. Another audio promotes positive motivation for listeners by reframing how internal voices speak. Other audios are similar to the mentioned ones and touch at least one of the three components of self-compassion.
Reference
Neff, K. (2003). Self-Compassion: An Alternative Conceptualization of a Healthy Attitude Toward Oneself. Self and Identity, 2(2), 85-101. Neff, K. (n.d.). Self compassion exercises. Self-Compassion. Retrieved September 8, 2021, from https://self-compassion.org/category/exercises/ Singh, N. N., Lancioni, G. E., Medvedev, O. N., Hwang, Y.-S., Myers, R. E., & Townshend, K. (2020). Using mindfulness to improve quality of life in caregivers of individuals with intellectual disabilities and autism spectrum disorder. International Journal of Developmental Disabilities, 66(5), 370–380. https://doi.org/10.1080/20473869.2020.1827211 Tkatch, R., Bazarko, D., Musich, S., Wu, L., MacLeod, S., Keown, K., Hawkins, K., & Wicker, E. (2017). A Pilot Online Mindfulness Intervention to Decrease Caregiver Burden and Improve Psychological Well-Being. Journal of Evidence-Based Complementary & Alternative Medicine, 22(4), 736–743. https://doi.org/10.1177/2156587217737204 Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals with autism spectrum disorders. Autism : the International Journal of Research and Practice, 18(8), 985–995. https://doi.org/10.1177/1362361313508024