Study Aims to Reduce Stress Among Parents of Children With Complex Healthcare Needs

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Assistant professor Glenda Hux (left) and occupational therapy doctoral student Sydney Rice at the CFC International Family Medical Conference.

Current evidence indicates that prolonged stress among caregivers of children and youth with complex healthcare needs significantly increases their risk of chronic disease and death.

"Unfortunately, systemic barriers, lack of access to qualified professionals or lack of services for these caregivers compound their challenges," said Glenda Hux, an assistant professor in the College of Education and Health Professions' occupational therapy doctoral program.

That information, along with her professional and personal experience, prompted the first phase of Hux's Integrative Neural Networks (INN) research study. This study explores caregivers' lived experiences to develop solutions for best supporting them.

Hux said one of the most prevalent parent or caregiver stressors is when a child with complex needs transitions from receiving care under one system to a new one. It involves the entire family. "For example, a young child transitions from a family-centered system to the school system, or from middle school to a different high school and eventually to adult services," she said. "In general, developmental transitions are stressful for parents as they have grown accustomed to one team and must transition to a different one."

Hux has found that collaboration among the child's education and healthcare professionals is an evidence-based strategy for successful transitions.

"Care delivered in a cohesive and integrated interprofessional collaboration decreases uncertainty and the need for the parent to function as the parent, case manager, nurse, educator and therapist," she said. "Effective, caring and intentional interprofessional communication allows the parental caregiver to feel at ease, decreasing their feelings of isolation and overall stress. This, in turn, allows them to focus on the joys of raising their child and improves their health and well-being."

Hux intends to expedite interprofessional collaboration among educational, mental health, healthcare and occupational therapy professionals who care for these families across their lifespans by creating opportunities for professional development in the INN theoretical frame of reference.

Typically, occupational therapists develop long-term relationships with parental caregivers when caring for a child with complex needs. In the short term, Hux's study will identify their primary stressors and develop occupational therapy interventions to improve the health and well-being of caregivers already visiting pediatric settings with their children. This will create needed access to care for this population, she said.

"I want to research data-driven solutions to help mitigate systemic barriers impacting their health," Hux added.

Hux and occupational therapy doctoral student Sydney Rice recently participated in the CFC International Family Medical Conference for children with CFC Syndrome, a rare and complex medical and neurodevelopmental condition caused by gene changes in a biological pathway.

While there, Hux and Rice met with parents, leading international researchers and representatives of other organizations. Hux presented a session that focused on facilitating interprofessional collaboration in pediatric-to-adult transitions, including the role of the occupational therapist.

Rice facilitated a group where parents shared their daily stressors. "Learning about their experiences helped me to gain a better understanding of how interdisciplinary collaboration and occupational therapists can intervene to better support these families," she said. "Attending this conference also highlighted the importance of social support and community for individuals experiencing caregiving stress. It was very impactful seeing the families connect and share their experiences with each other."

Rice shared about meaningful occupations to mitigate stress. Meaningful occupations are activities that are inherently motivating to someone. "Using meaningful occupations as a tool for mitigating stress allows individuals to play an active role in managing their health and well-being and can help parents or caregivers implement intentional stress management techniques that are individualized based on what is most impactful and meaningful to them," she said.

It's also important for occupational therapists to collaborate with individuals, families and interdisciplinary teams to develop a plan for establishing habits and routines. "For example, for a caregiver who enjoys gardening for stress relief but struggles to find time outside of caregiving to engage in gardening, an occupational therapist could help connect the caregiver/family to community resources and disciplines such as social work who can help them establish paid caregiving services or access to a day program," she said. "Addressing this barrier can help the caregiver establish a new routine for managing their health and give them time away from caregiving responsibilities to engage in gardening, which has been shown to positively impact stress and well-being."

Rice will continue working at the Hux Occupation Lab throughout her doctoral capstone project. Over the next few months, she'll apply research through Hux's INN framework related to her project, which will research the impacts of occupational therapy gardening interventions on the interoceptive awareness of adolescents with a history of stress or adversity.

INN is an ongoing study with multiple phases. The next phase will focus on whether interventions effectively improve caregivers' health and quality of life, Hux said. Later phases will converge findings from previous phases using a health services research approach. "This will help me create new care delivery models for caregivers," she added.

Steven Wheeler, head of the Department of Communication Disorders and Occupational Therapy, commended Hux on her research and mentorship of Rice. "This is so exciting and a reflection of the amazing learning opportunities available to our occupational therapy doctoral students," he said. "It also underscores our commitment to advancing the department and our college's 'We Care' message."