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A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at
Introduction:
The purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts.
Method:
A qualitative descriptive study was completed with 11 parental caregivers interviewed.
Results:
Using conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role.
Discussion:
Navigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.
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