Faculty Collaboration Database

Collaborative caregiving of parents who have an infant with congenital heart disease. J Spec Pediatr Nurs 2020 Apr;25(2):e12283

Date

12/04/2019

Pubmed ID

31793183

DOI

10.1111/jspn.12283

Scopus ID

2-s2.0-85076322908 (requires institutional sign-in at Scopus site)   3 Citations

Abstract

PURPOSE: Describe collaborative caregiving of the parents of an infant with congenital heart disease (CHD) with partner, health-care clinicians, and substitute caregivers (SC).

DESIGN AND METHODS: In a national online survey, 53 mothers and 12 fathers described collaborative caregiving for infants after CHD intervention with respect to facets of Bowlby's concept of the internal working model of caregiving. Parents identified concern for 24 everyday common problems or goals (i.e., issues; 10 for partner, 9 for clinician, 5 for SC), rated issue importance and difficulty, indicated an intention for seeking and using help (help use), and identified help source.

RESULTS: All survey items were a concern to at least 11 parents. Most prominently, all five of the SC items were identified by at least 44% of the parents as a concern. Everyday, common problems and goals were generally reported to be more important than difficult. Two items identified as partner issues, "Talking about life change" and "Handling stress," were a concern for about 50% of parents and identified by at least 74% as very important and 72% as moderately to greatly difficult. Help use was highest for SC items followed by items related to the partner. The partner was most frequently identified as a help source.

PRACTICE IMPLICATIONS: Nurses are in a position to assess and support parent collaboration within partner, clinician, and SC relationships for everyday problems and goals. The survey questions, with further development and testing, could be used for clinician assessment and tailoring of intervention to support parents' collaborative caregiving for infants with CHD.

Author List

Pridham KF, Harrison TM, Brown R, Mussatto K

Author

Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of Engineering

MESH terms used to index this publication - Major topics in bold

Adult
Caregivers
Cooperative Behavior
Disabled Children
Female
Heart Defects, Congenital
Humans
Infant
Infant, Newborn
Male
Middle Aged
Parent-Child Relations
Parents
Surveys and Questionnaires
United States