TABLE 3

Illustrations of Caregiver Challenges in the Postdischarge Period

Challenge CategoryChallenge Addressed by CaregiverChallenge Addressed by the Multidisciplinary TeamChallenge Not AddressedThe Parent Perspective
Medical issuesOne caregiver was concerned about their child’s GT site. She contacted the gastroenterologist who ordered a culture and prescribed an antibiotic.The caregiver of a child with diabetes insipidus noted increased urine output and mental status changes. The APRN completing the phone call contacted endocrinology for recommendations and ordered a sodium level.N/AMany caregivers noted that their child was at an acceptable level of health despite ongoing symptoms: “She’s good. She has had a couple of seizure episodes, but overall, she’s been good. She didn’t need the valium because they weren’t back to back.”
Follow-upOne patient’s ventilator had been alarming. By the time the discharge phone call was made, the mother had contacted and scheduled an appointment with their primary pulmonologist, and plans for a future sleep study had been formulated.One patient was discharged with a large cast, and the caregiver felt the patient could not comfortably be transported to appointments in the family car. The APRN assisted in coordinating ambulance transportation to appointments.N/AMany caregivers preferred to make their own appointments to better align with their busy schedules: “Mom prefers to make appointments and will work on them.”
MedicationsOne caregiver had a difficult time getting Marinol (dronabinol) but was able to pick up the prescription the day before the phone call.A patient had not received a necessary medication after discharge despite correct prescribing and completion of a previous authorization. The APRN completing the phone call contacted the pharmacy and discovered that the medication was out of stock. The attending physician prescribed an alternate medication until the original medication arrived at the pharmacy.One caregiver was told the reflux medication and the antibiotic were prescribed to her home pharmacy, but they were prescribed to the hospital’s outpatient pharmacy. The caregiver picked up the reflux medicine when the patient came back for a planned scope but for this reason did not complete the full course of antibiotics prescribed.Many caregivers were resourceful, making do with what they had while medication issues were sorted out: “The Keppra dose was increased while inpatient, but no new script was sent. [I am] giving correct dosing but will run out soon.”
Home nursingN/AN/AOur CM works diligently to fill home nursing hours for our patients if they are approved, but often shortages in the area inhibit this. In one instance, a caregiver requested thrice weekly skilled nursing visits until home nursing could be filled. Our CM contacted the patient’s primary physician with information about the company this patient had used before for nursing, but the company could not fulfill this request.Many caregivers noted lack of home nursing as a chronic challenge. One parent noted, “Our nurses are great, but we aren’t fully staffed.” Another caregiver noted they were “poorly staffed, but this is an ongoing issue, not a new problem.”
Medical supplies and equipmentOne caregiver noted issues with their child’s wheelchair. They brought the wheelchair to the child’s school physical therapist who was able to resolve the issue.The APRN completing a phone call contacted the CM when a caregiver requested an extra GT. The CM coordinated discussions between the patient’s insurance and their home care company. When it was determined that insurance would not approve an additional GT at the time, the CM provided out-of-pocket pricing information to the family.N/ASome families expressed frustrations with the navigation of a complex health care system for relatively basic items: “I’m having to work between Medicaid and the other insurance company to get the new formula.”
Discharge instructionsN/AIn one instance, a caregiver found discharge instructions unclear. The APRN completing the call was able to clarify instructions during the phone call.N/AN/A
  • GT, gastrostomy tube; N/A, not applicable.