Developing a sense of self-reliance: caregivers of infants with single-ventricle heart disease during the interstage period.
Cardiol Young
; 32(3): 465-471, 2022 Mar.
Article
in English
| MEDLINE | ID: covidwho-1886195
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 <$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how "to make it work" in the interstage period, and (3) Gaining a sense of self-reliance.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.Keywords
Full text:
Available
Collection:
International databases
Database:
MEDLINE
Main subject:
Hypoplastic Left Heart Syndrome
/
Univentricular Heart
/
Heart Defects, Congenital
Type of study:
Qualitative research
Limits:
Female
/
Humans
/
Infant
Language:
English
Journal:
Cardiol Young
Journal subject:
Vascular Diseases
/
Cardiology
/
Pediatrics
Year:
2022
Document Type:
Article
Affiliation country:
S1047951121002407
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