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The Experience of Parental Caregiving for Children With Medical Complexity.
- Source :
- Clinical Pediatrics; Jun2023, Vol. 62 Issue 6, p633-644, 12p
- Publication Year :
- 2023
-
Abstract
- Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population. [ABSTRACT FROM AUTHOR]
- Subjects :
- CHRONIC disease treatment
PARENT attitudes
CAREGIVER attitudes
SERVICES for caregivers
MINDFULNESS
POSITIVE psychology
PSYCHOLOGY of parents
MARRIAGE
HEALTH services accessibility
MEDICINE information services
RESEARCH methodology
SELF-perception
TIME
CHRONIC diseases in children
TERTIARY care
INTERVIEWING
HEALTH status indicators
MENTAL health
SOCIAL factors
MEDICAL care costs
PARENTING
EXPERIENCE
QUALITATIVE research
HEALTH information services
SELF-efficacy
PSYCHOLOGY of caregivers
QUALITY of life
EMPLOYMENT
INTERPERSONAL relations
THEMATIC analysis
PARENT-child relationships
PSYCHOLOGICAL resilience
CHILDREN
Subjects
Details
- Language :
- English
- ISSN :
- 00099228
- Volume :
- 62
- Issue :
- 6
- Database :
- Complementary Index
- Journal :
- Clinical Pediatrics
- Publication Type :
- Academic Journal
- Accession number :
- 173824997
- Full Text :
- https://doi.org/10.1177/00099228221142102