Barriers to Medical Technology Management in the Home Environment for Caregivers of Children With Medical Complexity

AUTHOR:
Jordan N. Watson, MD
Nemours/Alfred I. duPont Hospital for Children

CITATION:
Watson JN. Barriers to medical technology management in the home environment for caregivers of children with medical complexity. Consultant360. Published online May 27, 2021.

Barton HJ, Coller RJ, Loganathar S, et al. Medical device workarounds in providing care for children with medical complexity in the home. Pediatrics. 2021;147(5):e2020019513. https://doi.org/10.1542/peds.2020-019513

As health care providers, we are expected to be familiar with the medication and interventions we are prescribing, as well as provide practical guidance on implementing prescribed interventions in the patient’s home environment and inquire about barriers to care. Children with medical complexity often require medical technology such as feeding tubes, respiratory support, communication devices, and assistive mobility equipment.

A new study published in Pediatrics¹ identified the barriers of complex technology management for caregivers of children with medical complexity and ways that caregivers were able to work around such barriers. The authors defined a workaround as “a change to one or more aspects of an existing work system in order to overcome, bypass, or minimize the impact of obstacles, mishaps, established practices, or structural constraints that are perceived as preventing that work system or its participants from achieving a desired level of efficiency, effectiveness, wellness or other personal goals.” The study, which was conducted over 16 months from 2017 to 2019, included 30 family caregivers of children with medical complexity who were recruited from a pediatric complex care program at a tertiary care academic medical center in the Midwest United States. Data were collected through a combination of interviews and observations during a 2-hour home visit. Most patients had a feeding tube (87%), and 23% had a tracheostomy.

The authors identified 4 barriers to medical device management in the home and described associated workarounds to address each barrier. They found that when the quantity and type of devices did not meet the family’s needs, the caregivers described reusing single-use supplies, stockpiling equipment, or repurposing other supplies not typically designed for medical use.

Another barrier was the lack of adaptability of the medical equipment for use in different settings, especially transporting medical equipment throughout the home and in locations outside of the home. Families also identified medical equipment as being disruptive to the home environment, and the proposed workarounds included repurposing household devices for medical use (ie, the use of a paintbrush extension pole to hang feeding bags because it is smaller than a traditional intravenous pole).

The fourth barrier was improper fit of medical equipment. Families had modified devices, including bed height for easier transfers for the caregiver, and adjusted medical equipment such as bath chairs and wheelchairs for a better fit for their child.

The authors identified some limitations in the study, including the need to study barriers that families may face in other geographic, socioeconomic, and cultural settings, as this study was conducted at a single midwestern institution in the United States. Other areas to be explored include the caregiver’s relationship with his or her medical provider and barriers to accessing and obtaining medical equipment.

This article highlighted the ways that caregivers can work around barriers of complex technology management in their home environment. This should open the conversation of improving education for learners and health care providers of children with medical complexity so that we can anticipate potential barriers and work together to provide safe solutions.

In a separate study of pediatric residents,² participants identified a lack of effective health care provider training and complex technology management as major challenges to managing children with medical complexity. The study also identified solutions to these challenges, which included the integration of longitudinal patient relationships into medical training. This will allow health care providers to further understand the unique needs of each patient and his or her caregiver(s). Additionally, the development and expansion of programs that utilize community health workers who conduct home visits to identify unique needs in the home environment is another potential area for improving care for children with medical complexity and their families.

Jordan N. Watson, MD, FAAP, is clinical assistant professor of pediatrics at the Sidney Kimmel Medical College at Thomas Jefferson University in Philadelphia, Pennsylvania. She is a general pediatrician and a dermatology access physician in the Division of General Pediatrics and the Division of Dermatology at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.

References:

1. Barton HJ, Coller RJ, Loganathar S, et al. Medical device workarounds in providing care for children with medical complexity in the home. Pediatrics. 2021;147(5):e2020019513. https://doi.org/10.1542/peds.2020-019513

2. Bogetz JF, Bogetz AL, Rassbach CE, Gabhart JM, Blankenburg RL. Caring for children with medical complexity: challenges and educational opportunities identified by pediatric residents. Acad Pediatr. 2015;15(6):621-625. https://doi.org/10.1016/j.acap.2015.08.004