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Developing a sense of self-reliance: caregivers of infants with single-ventricle heart disease during the interstage period
- Source :
- Cardiology in the Young. 32:465-471
- Publication Year :
- 2021
- Publisher :
- Cambridge University Press (CUP), 2021.
-
Abstract
- Background:Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers’ experiences during the most critical “interstage” period between the first and second surgery.Objectives:To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period.Methods:Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2–4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation.Results:Our sample included 14 parents, who were interviewed 1–2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes Conclusions:Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.
- Subjects :
- Heart Defects, Congenital
Parents
Heart disease
media_common.quotation_subject
Psychology of self
030204 cardiovascular system & hematology
Symbolic interactionism
Univentricular Heart
Grounded theory
03 medical and health sciences
0302 clinical medicine
Constructivist grounded theory
Nursing
Perception
Hypoplastic Left Heart Syndrome
medicine
Humans
media_common
030504 nursing
business.industry
Palliative Care
Infant
General Medicine
medicine.disease
Caregivers
Pediatrics, Perinatology and Child Health
Female
0305 other medical science
Cardiology and Cardiovascular Medicine
business
Period (music)
Qualitative research
Subjects
Details
- ISSN :
- 14671107 and 10479511
- Volume :
- 32
- Database :
- OpenAIRE
- Journal :
- Cardiology in the Young
- Accession number :
- edsair.doi.dedup.....4c9de8d2ad5b70cd902142c960d51a46