Over the past several years, there has been increasing amounts of research documenting the caregiving challenges that accompany the day-to-day parenting of a child with special health needs and/or chronic medical conditions. Children who are diagnosed with emotional and behavioral problems (ranging from attention-deficit/hyperactivity disorder (ADHD) to autism – which also can be considered chronic conditions), can pose parenting challenges for even the most healthy, supportive, and committed parents. From the point of receiving a diagnosis to daily management of the range of symptoms and attempting to coordinate care with various providers, the emotional stress experienced by caregivers can be quite burdensome and may affect the functioning of the entire family. In an effort to achieve successful treatment outcomes for the child, it’s important to be mindful of this emotional stress and provide parents with tools to foster their own wellness and mental health while mitigating the risk for them developing their own health concerns.
Case summary
Dr. Jeremiah Dickerson
Bridget is a 10-year-old girl who presents with her single mother for a psychiatric consultation. Since early childhood, Bridget has demonstrated an array of behaviors that have affected her ability to engage with others socially; she was thought to be a temperamentally shy and sensitive toddler, and in elementary school, her mother describes the emergence of odd mental status changes and accompanying motor movements that were later diagnosed as complex-partial epilepsy. Since this diagnosis at the age of 6 years, despite receiving various antiepileptic treatment, Bridget has continued to present with an intractable seizure disorder. She is now prescribed a combination of benzodiazepines, cannabinoids, and other antiepileptic agents, but still has marked functional impairments. Behaviorally, it appears that Bridget has experienced some regression over the years and has been recently tested to have low-average intelligence and a neurocognitive profile characterized by attentional difficulties, executive impairments, and significant processing deficits.
Because of her complicated presentation, Bridget has been unable to attend school-based academic instruction, and her escalating levels of generalized worry have limited her ability to reliably interact with individuals outside of the family. These challenges also have posed difficulties for providers to perform thorough evaluations and provide Bridget with psychosocial interventions to address her anxiety and self-regulatory deficits. All in all, Bridget is a diagnostically complicated young girl. Her mother wishes to “figure things out,” and acknowledges having trouble managing her daughter’s increasingly defiant and unpredictable behaviors. In the past, setting limits and placing stress on Bridget have been thought to be etiologically related to seizure onset. Additionally, Bridget’s mother has been unable to find her own employment while providing care for her daughter and reports that financially, she isn’t sure how she can make ends meet while providing Bridget with medical marijuana. Bridget’s mother’s composure during the evaluation is applauded (particularly when her daughter’s defiant actions are readily appreciated), but she admits to feeling “exhausted.”
Discussion
Bridget’s case illustrates not only the complexities in attempting to understand and diagnose multifaceted neuropsychiatric phenomena, but also the struggles experienced by families who are challenged economically, socially, psychologically, and emotionally as a result of their child’s difficulties. Although caregiving and parenting is rife with rewarding opportunities for many family members, the provision of such nurturance can undoubtedly place parents at risk for significant hardships. Studies have demonstrated that caregiving demands are associated with poor health outcomes in adult caregivers (Ann. Behav. Med. 1997;19:110-6), and maternal cortisol levels in mothers of older children with autism were found to be significantly lower than normal and the hormonal dysregulation was associated with their child’s behavioral profile. Such findings are similar to those recognized in combat soldiers and others who experience enduring psychological distress (J. Autism Dev. Disord. 2010; 40:457-69).
Upon meeting with Bridget, it became clear that her mother required additional support and services to help care for her daughter’s difficult needs. Through seeking a diagnosis for her daughter, Bridget’s mother also was pursuing an understanding of her daughter’s strengths and struggles, and looking to partner with a provider who might be able to help her navigate the often complicated system of care. By gathering a comprehensive family history (assessing what mom’s vulnerabilities may be for developing her own mental health issues) and thoroughly assessing her current functioning with the Adult Self-Report and the Parenting Stress Index, as a provider, I was better informed to offer family-based treatment recommendations. Through self-reporting, Bridget’s mother endorsed her own mood complaints, occasional substance use, and a constellation of anxiety-based difficulties. We had a thoughtful discussion pertaining to elements of grief, fears, and guilt, which helped to lay the foundation for later exploring how Bridget may best be cared for in the future (such as residential placement). Bridget’s mother shared that she initially felt like a failure for seeking help and not “being able to parent” her daughter; supportive techniques were used to provide her with reassurance and validation.