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  • Challenges in Providing Complex Paediatric Care in Rural Communities
  • Marj Nagel

I am a nurse in a children’s hospital within a city of 1.2 million people. This hospital provides specialised tertiary and quaternary care serving approximately 240,000 square kilometers. Families may travel up to 400 kilometers one way to receive this specialty care as it is unavailable in their local area. This clinic provides collaborative and multi-disciplinary care for children with complex respiratory needs that require oxygen, and I am the nurse who coordinates the care of these children.

“Amy” is born at 23 weeks gestation to parents who live 2 hours away from the nearest Neonatal Intensive Care Unit. Amy is in the NICU for five months and is transitioned home on continuous oxygen due to her severe chronic lung disease. Her parents are simultaneously excited for her transition home but are also frightened considering their distance from specialised hospitalised care and Amy’s immediate nature of decreased oxygen saturations should her nasal cannula be displaced. During her admission, the family received social work support related to financial impact from the father’s job loss due to his absenteeism. The father did find employment prior to Amy’s transition home. However, to maintain his employment, this meant that the mother travelled alone for the 2-hour round trip to attend our clinic every 6 to 8 weeks for ten months in addition to any other appointments resulting from her premature birth. The social worker facilitated fund acquisition to assist with fuel and out of pocket expenses to support appointment attendance, and she also provided emotional support related to Amy’s premature birth and her extended hospital stay.

Considering this family’s travel distance, I coordinated her Registered Dietitian (RD), Occupational (OT) and Physical Therapies (PT) to be closer to her home to prevent lengthy clinic appointments and to support the family in receiving closer to home assessments and intervention. Assessment information pertaining to Amy’s progress was sent via email, as there is not a common electronic health record platform. The lack of such a common platform risks timely sharing of perspectives and actions on concerns. At times we were unaware of her local team’s assessments and vice versa. This was potentially risky for Amy and at times left the mother as the messenger between two services. Amy’s mother continued to receive social work support during her clinic appointments as her local team lacked this resource. However, our clinic’s social worker role was adjusted three times within one year resulting in varying levels of support for this family. At times, her local RD, OT, or PT team experienced their own staffing difficulties due to shortages or vacancies that were not immediately filled. During those gaps, these services returned to the clinic, but these staff experienced gaps in information due to the information sharing difficulties.

When providing nursing care for rural families, proactive, strategic, and creative approaches are required. As the clinic nurse, I provided telephone assessment, advice, and illness management. This [End Page E1] approach to Amy’s respiratory care was provided during periods of illness and during gaps between appointments. Due to their distant location, the clinic possessed a low threshold for interventions such as preemptively prescribing medication or adjusting her oxygen. These proactive approaches were required considering the one local pharmacy is closed on weekends, and the closest Emergency Department (ED) is 30 minutes away. The family has attended their local ED, but they felt the staff minimised Amy’s health complexity, resulting in a hesitancy to attend there again. At times, the mother and I had daily phone contact during periods of illness, and she contacted the consultant via switchboard after hours for advice and guidance. To aid in her experience in her local ED, I would contact the triage nurse ahead of Amy’s arrival to provide assessment information and background history. As such, this proactive communication with their local ED did positively influence the overall health of Amy and mom felt more comfortable to attend. The clinic was mindful of unsafe winter driving conditions and strategically booked appointments in the late morning to ensure Amy and her...


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