Terri Embry
May 2 2024
Reading Time: 5 minutes
Pediatric palliative care encompasses comprehensive physical, emotional, and spiritual support tailored to the unique needs of children with life-limiting illnesses and their families. While the foundational principles of adult palliative care also apply to children, pediatric palliative care has several important distinctions that providers must consider:
- Children are susceptible to a broader spectrum of conditions, such as congenital abnormalities and rare metabolic diseases that demand long-term care.
- Support for the entire family is essential, with special emphasis on addressing the needs of parents, siblings and grandparents.
- Many families prefer the option of home care as opposed to care in a facility because it decreases interruptions to normal everyday routines, and maintains quality of life for the family.
Telehealth technology is emerging as a valuable tool to enhance pediatric palliative care services, offering numerous benefits that improve accessibility, continuity and quality of care.
Defining telehealth
Telehealth refers to digital communication that provides healthcare services remotely so patients can interact with their provider without the need for an in-person visit. Remote delivery of health care can happen in multiple ways, including:
- Live video chat with real time, two-way interaction between patient and provider.
- Real-time messaging and video chat through a mobile device to share information including daily symptom check-ins, coordination of visits, delivery updates of supplies and medication and more.
- Monitoring side effects, medication adherence and other assessments through digital forms sent via email or text message.
Telehealth benefits uncovered
Accessibility: Telehealth eliminates geographical barriers, so children and families have access to palliative care services regardless of their location. In rural or remote areas where specialized care may be scarce, telehealth helps bridge the gap, providing timely consultations, symptom management and psychosocial support. Using telehealth, families no longer need to frequently endure long travels or face logistical challenges to receive vital care, because telehealth brings expert services directly to their homes.
According to a study published in the Health Informatics journal, families reported that using telehealth services reduced travel costs, time attending appointments and anxiety for caregivers.
Continuity of care: For children with complex medical needs, continuity of care is essential for managing symptoms, addressing concerns, and ensuring holistic support. Telehealth facilitates seamless communication and coordination among multidisciplinary care teams, including physicians, nurses, social workers and mental health professionals. Through virtual platforms, providers can collaborate in real-time, share updates and develop personalized care plans that evolve with the child’s condition. This continuity fosters trust, consistency and a sense of security for families navigating the uncertainties of their child’s illness.
Caregivers and staff experienced enriched relationships when they used video chat, according to a systematic review published in the Telemedicine and e-Health journal.
Patient-centered approach: Telehealth empowers families to actively participate in their child’s care, promoting a patient-centered approach that prioritizes individual preferences and values. Virtual consultations allow for meaningful discussions about treatment goals, advance care planning and end-of-life wishes in a comfortable environment. Families have the opportunity to ask questions, express concerns and make informed decisions with the guidance of their healthcare team. By facilitating open communication and shared decision-making, telehealth fosters a collaborative care model that meets the unique needs and preferences of each family.
In a study focused on children with congenital heart disease, families who received telehealth care had a significant reduction in parental anxiety compared to those who only communicated by telephone. Another study found that when oncology patients used videoconferencing, quality of life and anxiety scores improved.
Enhanced symptom management: Managing pain and other distressing symptoms is a cornerstone of pediatric palliative care. Telehealth technology offers innovative solutions to assess symptoms, adjust medications and provide supportive interventions remotely. Through video consultations, clinicians can conduct comprehensive assessments, observe nonverbal cues and tailor symptom management strategies to the child’s individual needs—enabling proactive interventions and timely adjustments to the care plan.
Educational and psychosocial support: Caring for a child with a life-limiting illness can take a toll on the emotional well-being of the entire family. Telehealth extends beyond medical interventions to offer comprehensive educational and psychosocial support through digital resources at any time, from nearly any device. These resources can provide coping strategies, information on community resources and support groups, drug interaction information and much more from the comfort of home. Families find comfort knowing they have a library of resources at their fingertips, day or night.
In a study of families whose children have complex medical needs, telehealth provided a sense of security at an otherwise difficult time and enhanced the transition from discharge to home care. Additionally, families had an increased level of confidence of meeting their child’s needs.
A promising future
Telehealth technology is revolutionizing pediatric palliative care by overcoming barriers to access, promoting continuity of care, empowering families, enhancing symptom management and providing comprehensive psychosocial support. As an integral component of the care continuum, telehealth complements traditional in-person services, extending the reach of specialized care and improving the overall quality of life for children with life-limiting illnesses and their families.
By harnessing the potential of telehealth, we can continue to innovate and evolve pediatric palliative care practices to ensure compassionate, holistic, and patient-centered support for all those in need. Schedule a demo to learn how to leverage CitusHealth’s telehealth technology features for your organization.
Schedule a demo with CitusHealth to learn how to use technology and data to deliver high-quality, specialized care, ultimately driving better health outcomes and improving quality of life.
