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KMID : 0918520170170010001
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Journal of the Korean Society of Inherited Metabolic Disease
2017 Volume.17 No. 1 p.1 ~ p.10
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The Perception and Emotional Experiences of Rare and Intractable Diseases in Caregivers and Pediatric Patients with Mitochondrial diseases
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Eom So-Yong
Lee Joo-Young
Hyun Ji-Ah
Lee Young-Mock
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Abstract
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Purpose: This study aimed to investigate the perception and emotional experiences in rare and intractable diseases for caregivers of pediatric patients with mitochondrial diseases in order to provide therapeutic interventions for patients, caregivers, and families.
Methods: A total of 83 caregivers of pediatric patients with mitochondrial diseases were recruited from the pediatric mitochondrial disease clinics of the Gangnam Severance Hospital in South Korea. Participants completed the survey about their perception of mitochondrial disease and emotional experiences after the diagnosis, and these clinical data were analyzed accordingly.
Results: Surveys from a total of 83 caregivers of patients were analyzed, and the patients’ age ranged from 6 to 12 years (33%), followed by ages 1 to 6 years (30%). Children with mitochondrial diseases were between 0 and 0.5 years of age at the time of first symptom onset (43%), and the duration of illness lasted more than 10 years in most cases (42%). Prior to diagnosis of mitochondrial diseases, the amount of awareness the caregivers had was ‘Not at all’ for both rare and intractable diseases and mitochondrial diseases in 44 cases and 68 cases, respectively. For the caregivers’ emotional experiences, the most common initial responses were ‘Discouraged/despair’, ‘Helpless/lethargic’, and ‘Disconcerted’.
‘Anxious’, ‘Committed to treatment’, and ‘Responsibility as family members’ were the most common emotional responses from the caregivers, followed by ‘Disconcerted’ and ‘Helpless/lethargic’.
Conclusion: It is important to consider the level of perception and emotional experiences of caregivers and patients with rare and intractable mitochondrial diseases for planning treatment programs.
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KEYWORD
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Perception, Emotional Experiences, Rare and Intractable diseases, Caregivers, Pediatric Patient, Mitochondrial diseases
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