Pediatric Coccidioidomycosis Patients: Perceptions, Quality of Life and Psychosocial Factors
Abstract
:1. Introduction
1.1. Coccidioidomycosis
1.2. Diagnosing Coccidioidomycosis
1.3. Children with Coccidioidomycosis
1.4. Psychosocial Aspects of Coccidioidomycosis
1.5. Specific Aims
2. Research Design
2.1. Methods
2.2. Procedures
2.3. Data Collection from Primary Caregivers
- Detection
- (1)
- How (and where/by whom) is coccidioidomycosis detected by child patients, their families and their healthcare systems?
- (2)
- What causes delays in diagnosis?
- Access to Care
- (3)
- What barriers impede patients and families’ access to care/treatment?
- (4)
- What (information, support, etc.) do patients and families feel that they need?
- Experience
- (5)
- What difficulties (physical, psychosocial, etc.) do patients and families face as a result of having pediatric coccidioidomycosis?
- (6)
- What myths about coccidioidomycosis do patients and families currently hold?
2.4. Quality of Life Scales with Pediatric Patients
2.5. Drawing Task with Pediatric Patients
2.6. Child Illness Perception Questionnaire with Pediatric Patients
2.7. Child Coping Scale with Pediatric Patients
2.8. Triangulation between Data from Primary Caregivers and Pediatric Patients
3. Results
3.1. Participants
3.2. Exploratory Interviews
3.2.1. Lack of Control
3.2.2. Lack of Knowledge
I mean I heard about it [Valley Fever] but it’s like this myth through this valley one person will says this little thing about it or somebody nobody really, really discussed (.) you know and especially in the hospital [beyond the specialist clinic]; you ask them they have no clue what valley fever really even is...you hear like I said it’s a myth you’d hear someone say ‘oh my great uncle 20 years ago got it, or this that and the other. Never really anything significant.—Parent H.
3.2.3. Limited Resources
“I was you know disability family disability doesn’t pay (laughs) so the amount of what I actually got on my paycheck was it a financial strain? Oh hell yeah in between driving um (.) Dad coming back and forth the whole time I was up there me not having my wages while I was up there um food because food at children’s is expensive you know hers is taken care of mines not um so I mean that’s so I was lucky they’re were able to do the ’fridgerator for me and there and stuff so it did help I’d go to the grocery store and pick up a few things here and there but um man the cost was bad (.) it was hard.”—Parent C.
3.3. Primary Caregiver Survey Results
3.4. Children’s Quality Life Scale Results
3.5. Children’s Drawing Task Results
3.6. Children’s Illness Perceptions
3.7. Children’s Coping Strategies
4. Discussion
5. Conclusions
Acknowledgments
Author Contributions
Conflicts of Interest
References
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Gaab, E.M.; Naeem, F. Pediatric Coccidioidomycosis Patients: Perceptions, Quality of Life and Psychosocial Factors. Healthcare 2015, 3, 775-795. https://doi.org/10.3390/healthcare3030775
Gaab EM, Naeem F. Pediatric Coccidioidomycosis Patients: Perceptions, Quality of Life and Psychosocial Factors. Healthcare. 2015; 3(3):775-795. https://doi.org/10.3390/healthcare3030775
Chicago/Turabian StyleGaab, Erin Mary, and Fouzia Naeem. 2015. "Pediatric Coccidioidomycosis Patients: Perceptions, Quality of Life and Psychosocial Factors" Healthcare 3, no. 3: 775-795. https://doi.org/10.3390/healthcare3030775