OARacle Newsletter

In 2018, OAR gave a $2,000 Graduate Research Grant to Sara Spong, who was then a doctoral student at Regent University pursuing a Ph.D. in counselor education and supervision. Her study examined stress and resiliency factors in caregivers of autistic children. The American Psychological Association defines resilience as “the process and outcome of successfully adapting to difficult or challenging life experiences, especially through mental, emotional, and behavioral flexibility and adjustment to external and internal demands.”

While many studies have highlighted the stress that caregivers of children with neurodevelopmental disorders face, a 2011 study showed that some caregivers have shown positive psychological adaptation, as Dr. Spong wrote in her proposal. A 2008 study found that increased stress in caregivers decreases the effectiveness of early teaching interventions in autistic children. Dr. Spong’s goal for the graduate study was to contribute a better understanding of the factors that support resiliency so that programs could be developed to build positive adaptation skills in caregivers.

Methodology

Working with Amy Newmeyer, M.D., a developmental pediatrician at Children’s Hospital of the King’s Daughters in Norfolk, Va., Dr. Spong prepared a packet of assessments that were given to caregivers who brought their children to the hospital for treatment. She collected data from 132 caregivers. Of that number, 80 had a diagnosis of autism.

The assessments included:

• The Perceived Stress Scale to measure how an individual perceives their overall stress levels
• The Parenting Stress Index to determine parental stress levels correlating to parenting
• The REMAP Resiliency scale to measure resiliency
• The McMaster’s Family Assessment Device to examine whole family functioning and filled out by all members of the family who are able to respond
• A demographic form to determine ages and relationship of everyone residing in the home, family structure, level of education, income, employment, religious involvement, debt, support systems, coping inventory, and military status

Two assessments of the 80 were eliminated because the participants had not filled out all the surveys. Of the remaining 78 assessment packets, 17 contained skipped questions. Dr. Spong used a test to determine if the data was missing at random, and the test confirmed that it was. She then used a process to give those responses a maximum likelihood number, thus allowing for full data sets.

Outcomes

Using statistical analyses to categorize and organize the data from the assessments, Dr. Spong could determine factors that most affected resiliency and answer the primary research question, “What sets a resilient caregiver apart from a less resilient caregiver?”

Stress followed by family functioning were found to be the factors that most negatively impacted resilience. Though not surprising, the results point to the increased need to assist families in learning how to manage stress. Dr. Spong also found that caregivers who reported no chronic health conditions had higher resilience than those with chronic health conditions. Fifty-two of the 78 caregivers reported suffering from one or more chronic medical conditions.

Half of all respondents were experiencing problematic and near problematic family functioning. When stress levels are high, problematic family functioning negatively affects the caregiver’s resiliency. She noted that helping family members understand available supports within and outside the family could help build resilience and provide support for all members of the family.

The most impactful positive factor was faith, according to Dr. Spong’s analysis. Caregivers reporting higher levels of faith had the highest levels of resiliency. As she noted in her dissertation, this finding corroborates a 2012 study that found that spiritual wellness is a protective factor for mothers of autistic children. Dr. Spong suggested that clinicians can recommend a caregiver use a spiritual practice as a positive coping strategy to raise resiliency and subsequently decrease stress and increase family functioning.

The conclusions of this study indicate that clinicians should encourage strategies that increase caregivers’ health and wellness and strategies to incorporate spirituality into their lives to reduce stress and increase resilience.

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.