Clinical Barriers for Caregivers of those diagnosed with 22q Deletion Syndrome
A 22q Deletion Syndrome (22q) diagnosis at any age is life-changing for the affected individual as well as the caregiver. Short of a recognizable anomaly, caregivers may spend decades searching for medical solutions that go unanswered. The purpose of this qualitative research was to explore insights of caregivers of those affected with 22q. Interviews of caregivers of 22q individuals were conducted face-to-face in-person or virtually. In this research, caregivers were defined as any family members who regularly provide direct care to a 22q affected individual. These caregivers specifically assist with day-to-day living. All caregivers in this study were parents. This study was guided by the Uncertainty in Illness model, with data analyses conducted through NVivo coding. Based on the caregiver perceptions articulated in this research, the emotional pressure on caregivers was apparent. Five out of 10 participants had a child born with congenital heart disease, leading to an early 22q diagnosis. Five out of 10 were diagnosed with 22q post-birth, following an indication of other serious medical conditions. A greater inquisitiveness could have led to an earlier diagnosis, leading to improved clinical outcomes.
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