BACKGROUND AND OBJECTIVE: Chronic pain in children with cerebral palsy (CP) is underrecognized, leading to detriments in their physical, social, and mental well-being. Our objective was to identify, describe, and critique pediatric chronic pain assessment tools and make recommendations for clinical use for children with CP. Secondly, develop an evidenceinformed toolbox to support clinicians in the assessment of chronic pain in children with disabilities.
The median length of stay from the initiation of invasive long-term ventilation to discharge home from the rehabilitation hospital was somewhat long compared with other ventilation programs worldwide. Additionally, approximately 20% of the cohort never transitioned home. There is a timely need to benchmark across the country and internationally, to identify and implement strategies for cohesive, coordinated care for these children to decrease overall length of stay.
Objectives
Discharging a child home on long‐term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home.
Methods
We conducted 11 semi‐structured interviews with FCs. Interviews focused on FC's experience with the training process, perception of competency from a knowledge and skill perspective, and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded, and analyzed using an inductive thematic analysis approach.
Results
Eight mothers and three fathers of ten children participated. Six primary themes were identified: (1) making an informed decision, (2) transitioning to rehabilitation, (3) building capacity for self‐care, (4) coordinating case management, (5) readying for discharge home, and (6) experiencing home care.
Conclusion
Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home.
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