Where: The Place Where Rural Medicine and Home Meet

When I started my career as a social worker in the largest health system in the state, located in that state’s most populated city, I never imagined part of my social work assessment would be, “Do you have heat?” or maybe, “Do you have running water?” Much less, I never imagined I would have to determine what care a child could receive based on their proximity to healthcare services.

As I have grown in my career, I have become more aware of the disparities in rural healthcare as well as how chronic health needs affect children. Proximity to resources can result in the placement of a child hours away from their home (without their parents near), difficulties obtaining medical supplies or medications, struggles financially to travel to ongoing medical care and the like. Suggesting a family move closer to adequate medical care can prove to have additional challenges, including the lack of a support system. Parents are attempting to make the best decision possible given the information and resources they have in the moment, typically leaving much unknown.

Several recent patients come to mind as I consider rural disparities in healthcare. The first child is a teenage female who had sepsis. Her extended family stayed at the Ronald McDonald House for the duration, though they rotated who was at the bedside and present. During the extended stay in the acute hospital setting, I started to explore possible placement options closer to home. I called a variety of hospitals, swing bed facilities, and nursing homes attempting to find the best placement option to meet the patient needs while attempting to honor the family’s wish to be closer to home. Inpatient options closer to home for a pediatric patient were minimal and in fact, nonexistent.

When I was phoning nursing homes, inquiring about bed placement options for a teenager, some of the nursing homes were not startled at all that I was phoning. In fact, some shared stories of other experiences where there were no options for a youth placement, and they were able to provide the necessary care so that the patient could be closer to home.

After not being able to find an inpatient facility, I started to reach out to home health agencies in their local community, finding out they did not offer physical or occupational therapy in the community due to lack of providers, the closest physical therapist was over an hour away from the family home. This family had limited access to funds and transportation, so several appointments a week at an hour each way was not feasible for the family. The consideration of the younger siblings that were in school, family schedules, as well as the financial impacts the illness has had on the family affect the patient autonomy. The grandmother became a vital piece in attempting to figure out the safest discharge plan with the best possible outcomes for this patient, rather than the parent. Though the mother was involved in the decision-making process, the grandmother had the voice for the patient. In order to have the holistic healthcare needs of the patient met, the discharge was to a lower-level care at a facility six hours from their home.

The other recent situation is one of an infant who had a genetic disorder, which resulted in the parents choosing a tracheotomy with ventilation support. Throughout multiple readmissions, I worked with a local early intervention agency staff member, who knew the father as he was friends with one of her sons, in attempting to form a safe discharge plan for the patient. The mother was present sporadically during the multiple hospitalizations, and the father was at the bedside throughout. During the decision making for the tracheotomy, it was discussed with the parents that if this child had a ventilator, the child would not be able to return home due to the lack of extended-hour nursing care or a durable medical equipment company in their home area that was willing to provide a ventilator in the home setting. The family seemed to understand this and voiced that...