Parents of infants with a complex congenital heart defect (CCHD) are likely to encounter new, complex, and intense parenting responsibilities during the infant's first year. Parents' competency in managing these responsibilities may make a difference for their own and the infant's well-being. These competencies may be a function of their working models (WMs) of parenting. A WM is a dynamic system of interconnected components with processes that are set and corrected according to goals, motivations, and meanings. Intentions determine strategies employed to make incremental progress toward goals. Expectations are """"""""online"""""""" during events and facilitate their interpretation in light of goals, guide action (through strategies), forecast the future, and regulate meaning. WMs are constructed through experience and may be influenced by family members and clinicians. A framework for exploring parenting WMs for infants with CCHD or other health problem is not available. Caregiving theory and theory of family management for children with special health-care needs suggests that types of WMs may be identifiable from parents' descriptions of their WMs. The purpose of this longitudinal study is to advance understanding of WMs of parenting a child with a CCHD through identification and description of WM types.
The specific aims are: (1) through multi-method study at three infant ages (1, 6, and 12 months), explore the evolution of WMs PC, CCHD for individual parents and for parents, on the whole, across the infant's first year; and (2) explore, in mixed-methods analyses, these WMs in the context of infant conditions (severity of illness, illness impact on the family) and parental outcomes (feeding competencies, affective experience, and quality of life/QOL). We will also begin to develop a typology of WMs. Participants will be 18 parents who are the infant's primary caregivers (PCG) and who are married or partnered, at least 18-years-old, and English speaking. Methods include: (a) semistructured interviews done 3 times in the home with, PCG and spouse/partner, if available; (b) guided discussion during videotape replay of selected portions of a just-completed infant feeding; and (c) structured measures of the PCG's perception of illness impact on the family and of balance of positive and negative affect; (d) an observational measure of parent-infant interaction; (e) a visual analogue measure of QOL; (f) a monthly telephone interview; and (g) a review of infant medical records. This exploratory study will advance study of the WMs of parents of infants with other special health-care needs, support further WM typology development, and contribute a theoretical base for clinical trials of patient-centered interventions. ? ?
| McKechnie, Anne Chevalier; Pridham, Karen (2012) Preparing heart and mind following prenatal diagnosis of complex congenital heart defect. Qual Health Res 22:1694-706 |
| Pridham, Karen; Harrison, Tondi; Krolikowski, Mary et al. (2010) Internal working models of parenting: motivations of parents of infants with a congenital heart defect. ANS Adv Nurs Sci 33:E1-E16 |
