Caregivers are arguably the most important members of a patient’s care team, with more touchpoints and access to a patient and their lifestyle than any provider or specialist. With approximately 43.5 million caregivers in the U.S., 40 percent are in high-burden situations where caregivers take on substantial cumulative physical, emotional, social, and financial strains to care for a person with a disability or chronic, complex disease. Within these situations, studies show most caregivers feel ill-prepared for their new role, often left providing care with little to no support. This can lead to caregiver burnout due to high levels of stress, emotional strain, loss of self-identity, and exhaustion, causing negative impacts on patient outcomes as the guiding hand of care could stop at the metaphorical door of the physician’s practice.
Approximately 80 percent of autistic adults or those diagnosed with intellectual and developmental disabilities (IDDs) live at home and receive support from a family caregiver. For family caregivers providing support across a child or adult’s life, this role can come with an extra set of challenges and extenuating factors that complicate care and impact patient outcomes. Additionally, shortages in health care professionals, particularly within board-certified behavior analysts (BCBAs) available to provide applied behavior analysis (ABA) therapy, an evidence-based service that is widely accepted as the most impactful way to improve symptoms associated with autism spectrum disorder (ASD), it is difficult for providers to deliver quality care to individuals with ASD/IDDs while simultaneously engaging parents through training and education. This can leave parents and caretakers feeling lost, unsupported, and in limbo when looking to meet their child’s needs and their own.
An opportunity arises for health care to lean on technology and updated software that bridges the gap between in-clinic care and at-home support to provide caregivers with the tools and education necessary to reinforce professionally delivered care in the home and extend the reach of the practitioner or specialist. Parent or caregiver training is critical in the delivery of ABA care as it can equip families who are eager to assist and guide their children but are unsure how to deploy some of the basic ABA methodologies that professionals use in direct services with the tools and knowledge to continue care and avoid pauses or setbacks. Within a broader health care lens, this type of care coordination could be beneficial to advancing personalized care outcomes and closing gaps within the continuum of care.
How is technology extending the reach of the specialist: a parent’s role in ASD care
As a parent, I play a direct role in my children’s care – whether in managing a fever, staying up-to-date in their speech therapy progress notes, or supporting their developmental and academic progress. For many families with a neurodivergent loved one, parent training services have become a required component of an individual’s care plan, as well as a key quality measure due to its proven ability to influence outcomes. Parents want tools and resources that empower them to play a central role in their children’s developmental progress – in a way that is still clinician-led, to help them reinforce the clinical plans outside of the therapy session.
Technology can be this medium, facilitating parent training on learning platforms and software designed to unlock the full potential of clinician-led, parent-reinforced care. Software and platforms that are easily accessible for parents and caregivers can host informational digital content and videos to help learners achieve the best outcomes, and support in-person therapeudic programming to empower caregivers with the basics of care and therapy. This gives providers a way to scale training quickly without burdening their already limited workforce, while providing parents with a tool that enables them to digest information at their own pace. This new digital relationship that is established between caretaker and physician or specialist inherently creates a feedback loop where clinicians are able to see both a learner and parent’s progress outside of the clinic. This provides a more holistic view of the family’s growth, enhancing the care team’s overall understanding of their unique care journey.
When it comes to autism or related IDDs, technology’s benefits are felt by all parties. If a parent can access video-based modeling resources during times of need quickly and accurately utilize interventions that uniquely support their child, positive outcomes become that much more likely. As a result, providers are left with more engaged and empowered parents which can accelerate learner progress and help families maximize the clinically recommended number of hours the learner should receive. This also reduces BCBA burnout as this software can offload or minimize the non-reimbursed hours required to generate parent training curricula from scratch. Simple modifications of digital material can be made with the help of the family or learner themselves, even during the billable hour. In turn, this helps the patient receive the personalized, quality care they need at the time they need it, leaving no gaps in the continuum of care from clinic to home.
Unifying the care continuum means bettering the patient and caregiver experience.
The broader implications of tech-supported education for parents and caregivers extend far beyond ASD/IDD care. With more than 11 million family caregivers looking after someone with Alzheimer’s disease or other dementias and 34.2 million caregivers providing senior care to an adult age 50 or older, support and knowledge to extend care for patients to the home can be applied across complex and chronic conditions.
Caregivers across the board need added support and education to feel comfortable providing care to those they serve. Of family caregivers who provide complex chronic care 46 percent perform medical and nursing tasks and 57 percent report that they do not have a choice about performing clinical tasks. With platforms and software designed to provide guidance for caretakers in these tasks, facilitate clinical interventions, offer support, and determine when to refer patients to emergency care services, the care loop for patients with disabilities and various conditions can be more effectively managed. This may help streamline certain aspects of health care, creating better access for patients and caregivers to resources for a more supportive health care system.
Kerri Milyko is a product and clinical strategist.