The Importance of Caregivers
By: Arielle G.
What is a caregiver? A caregiver is someone who devotes their time and energy to helping another person. Examples of caregivers include but are not limited to: family (any relative, foster family, neighbor, etc. who has a significant personal relationship), professional, and volunteer caregivers. A family caregiver is a family member who cares for another member of their family. Most commonly, they are women between the ages of 45-64 (Stepler, 2015). A professional caregiver is someone that gets paid to help another person in order to improve their quality of life and promote living independence. On the other hand, volunteer caregivers dedicate their free time to providing assistance to others, generally the elderly, free of charge. Caregivers are responsible not only for themselves, but for caring for another life as well, therefore it is extremely important for caregivers to take the time to prioritize themselves. The increased toll caregivers endure puts them at a higher risk for high blood pressure, diabetes, and premature death. In addition to these physical health issues, they face a serious disposition for mental illnesses, such as depression.
“Researchers have shown that caregivers of children with developmental disabilities are more likely to report chronic illnesses, limited activity, more somatic symptoms, lower levels of general health, and symptoms of depression and higher levels of stress than caregivers of children with typical development. Caregivers were also reported to experience changes in job status as well as family and marital relationships. Self-stigma and stigma from the community may also disrupt the social life of the caregivers and consequently negatively affect their quality of life” (Isa, Ishak, Rahman, et al., 2021).
The support for caregivers, especially caregivers for neurodivergent children poses a major public health issue. This has the potential to affect the quality of life for millions of people. In fact, “Caregivers’ health-related quality of life was found to be either directly or indirectly related with child’s age, caregiver’s age, marital status and chronic illness, number of children in the family, gross income, and socioeconomic status” (Isa, Ishak, Rahman, et al., 2021). Being a caregiver takes endless patience and has higher demands than a full time job. Many sources state family caregivers or stay at home parents work upwards of 140+ hours a week. Oftentimes, a thankless job endured for the betterment of a loved one.
Caregivers for disabled children often feel misunderstood and judged by public perception. Not to mention, they can be consumed by stress, social isolation, and financial strain. “Approximately the same number of caregivers reported needs for support in both looking after their own health (including eating and sleeping properly; (20.4%) and in balancing their own needs against the patient's needs (20.7%)” (Kilic and Oz, 2019). Heightened stress levels are commonly associated with a decreased quality of life in caregivers. Many individuals with neurodivergence or disabilities experience additional costs of life. Some of these may include various therapies, specialists’ appointments, transportation needs, or specialty feeding/diet supplies. This is further complicated by socioeconomic factors that contribute to the stress levels of family caregivers, such as income, financial support, and the number of children in their household.
The National Alliance for Caregiving (NAC) has conducted numerous research and reports, regarding caregiving in the United States. Their most recent report focuses on caregiving in the U.S. in 2020. Accordingly, there has been a gradual increase in the amount of family caregivers experiencing adverse effects to their own health. In fact, according to the National Alliance for Caregiving, “23% of Americans say caregiving has made their health worse from the years 2015 to 2020” (NAC, 2019). As of February 2021, NAC created the report: From Momentum to Movement: Developing a Unified Strategy to Support Family Caregivers Across the Nation. This is ultimately a strategy to guide states in providing caregiving support programs.
One source, in particular, that brings light to both this public and social health issue is the Unseen: How We’re Failing Parent Caregivers and Why it Matters documentary, debuting May 2022. Although it is currently only a trailer, it is very impactful, showing everyday people providing their personal stories and experiences caring for a special needs child. In fact, as mentioned in Unseen, “16.8 million people in the United States are caring for a child with disabilities or complex medical needs.” Please watch the short trailer here.
As mentioned, being a caregiver is more than a full-time job, which is why it is very important to find beneficial ways to reduce stress. It is necessary to allocate time for yourself away from your caregiving responsibilities. This can be as simple as partaking in a hobby, reading, doing yoga, etc. Utilizing resources and taking time for oneself is nothing to feel guilty about. It is imperative for your mental health to take time off. There are numerous places in the Greenville area, alone, that provide free or reduced respite care, such as the Advanced Institute for Development and Learning, From the Heart Home Care (offers in-home respite opportunities whenever needed), and A Child’s Haven (extended day program daily from 7:00 am-6:00 pm to allow caregivers to balance work and other commitments). Additionally, seeking social support, by joining a support group, can be a great way to reduce stress. Social support groups, even remote ones, such as Mommies of Miracles, which is listed below, is a useful resource to interact with other moms who also have neurodivergent children. Taking advantage of local resources, and designating alone time is essential for caregivers to reduce their stress and improve both their and their patient’s quality of life.
At AID-L, we understand, and we strive to make a real difference in each and every patient and—just as importantly—caregiver that we possibly can. We are guided by a mission to provide therapeutic solutions and support systems today so children and families can thrive tomorrow. In addition to providing speech therapy for ages 0-21, AID-L prides itself in its community programming. Respite opportunities are offered either monthly or bi-monthly. Included is either a Friday date night or Saturday morning. Recognizing that caregivers may feel isolated, AID-L began an online community to allow families to link arms and grow together. The Advanced Institute for Development and Learning sponsors fun and inclusive events for patients, and caregivers, alike. Whether it’s an educational opportunity or a fun trunk or treat, AID-L strives to beneficially impact a family’s quality of life.
Greenville Resources
Family Connection of South Carolina offers several different services and support programs for parents. This consists of training classes and workshops for parents to gain knowledge and find helpful resources for their child
Mission to provide disabled and special needs people with various opportunities and services. Thrive Upstate helps promote independence, allowing for medically complex people to fulfill their true potential. They also provide community outreach for caregiver support.
Kidding Around is a very helpful website for finding local family-friendly activities in the Greenville Area. Additionally, they sponsor parenting workshops for caregivers.
AID-L prides itself in hosting community events. This July wether will be hosting a Caregiver Support Workshop! This workshop will boast subject matter experts and allow attendees to leave with additional resources.
Check out the events calendar to stay up do date on any respite opportunities, inclusive events, or educational resources!
Additional Resources:
Tucker’s House is a non-profit organization that helps families of children with special needs, make their homes more accessible. Certain families may qualify for financial support to cover the costs.
Nightingale’s Nursing Specializes in helping children of all ages with Down syndrome, Autism, Cerebral Palsy, etc. They will provide numerous different services for your special needs child in the comfort of your very own home.
Mommies of Miracles offers virtual or in-person support for Moms. The mission is to bring together moms who have children with medical complexities. Some of the resources included are grief support and a sense of hope.
Works Cited
“Family Connection of South Carolina - Family Connection of South Carolina.” Family Connection of South Carolina - Changing Lives by Making Connections, Raising Awareness, and Promoting Inclusion for Those with Disabilities and Special Healthcare Needs., 25 Jan. 2022, https://www.familyconnectionsc.org/.
From Momentum to Movement - Caregiving. https://www.caregiving.org/wp-content/uploads/2021/02/NAC_50state-Strategy_Report_NAC-FINAL_02_2021.pdf.
Isa, Siti Nor Ismalina, et al. “Quality of Life among Caregivers of Children with Special Needs in Kelantan, Malaysia: The Importance of Psychosocial Mediators.” The Malaysian Journal of Medical Sciences: MJMS, Penerbit Universiti Sains Malaysia, Apr. 2021, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075598/.
Kidding Around Greenville, 29 May 2021, https://kiddingaroundgreenville.com/.
Kilic, Sevcan Toptas, and Fatma Oz. “Family Caregivers' Involvement in Caring with Cancer and Their Quality of Life.” Asian Pacific Journal of Cancer Prevention: APJCP, West Asia Organization for Cancer Prevention, 1 June 2019, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7021632/.
“Making Homes Accessible - Franklin, TN.” Tucker's House, 12 Nov. 2021, https://tuckershouse.org/.
“Mommies of Miracles.” Mommies of Miracles RSS, http://mommiesofmiracles.com/.
“Nightingale's Nursing & Attendants - South Carolina Home Care Provider.” Nightingale's Nursing, 22 Aug. 2017, http://nightingalesnursing.net/.
“Redefining Ability.” Thrive Upstate, https://thriveupstate.org/.
Stepler, Renee. “5 Facts about Family Caregivers.”
Pew Research Center, Pew Research Center, 31 July 2020, https://www.pewresearch.org/fact-tank/2015/11/18/5-facts-about-family-
