Umeå University's logo

The purpose of this study was to illuminate the meanings of the lived experience of support for parents of adolescents with heart defects. Narrative interviews were conducted with four mothers and two fathers of adolescents with heart defects. Interviews were interpreted using a phenomenological-hermeneutic method. The interpretation revealed that parents, themselves, attempt to be very supportive. They support their adolescent children, the rest of their families, the staffs of their children's schools, and others around their children. The sense of gratification and contentment that parents receive from fulfilling supportive functions is, in turn, influenced by the support that they, themselves, receive from care providers.

PURPOSE: The purpose of this study was to illuminate the meanings of support as disclosed by mothers of children with congenital heart defects (CHD).

DESIGN AND METHOD: Narrative interviews were conducted with 10 mothers of children with CHD. A phenomenological-hermeneutic method was used for interpretation of the transcribed interviews.

RESULTS: The comprehensive understanding of mothers' lived experiences of support emerged as the experiences of receiving good support, receiving "poor support," and absence of support.

PRACTICE IMPLICATIONS: Mothers receiving person-centered and family-centered care feel more supported and are more likely to adapt to the stresses of parenting a child with CHD.

The purpose of the study was to illuminate the meanings of the lived experiences of support as disclosed by fathers of children with CHD. Narrative interviews were conducted individually with five fathers of children diagnosed with a CHD. A phenomenological-hermeneutic method was used to interpret the verbatim transcribed narrative interviews. The meanings of the lived experiences of support for the fathers were identified in two themes and illustrate the fathers’ feelings of being supported when being in a shared relationship with others. A third theme illustrates the situation when support is absent. Our findings pointed to that support for fathers of children with a CHD might be best promoted by the philosophy of family-centered care.

Aims and objectives. Testing the psychometric properties, reliability, and validity of a cross-cultural translation into Swedish of the Icelandic instrument “ICE-Family Perceived Support Questionnaire” and, furthermore, reporting estimations of support given by nurses to families in a sample of parents of children with congenital heart defects.

Background. Parents of children with congenital heart (CHD) defects often experience greater psychosocial morbidity than parents of children with other medical conditions. In order to design and evaluate interventions with family-centered support, a suitable instrument for measuring family members’ perceived support is required for the Swedish context.

Design. A translation and psychometric testing of the instrument ICE-FPSQ.

Methods. A sample of 97 parents, including both fathers and mothers, of children with CHD selected in year 2012. A translation of the ICE-FPSQ into Swedish was done, and reliability and validity were tested for the Swedish version.

Results. Parents scored low on perceived family support from nurses on the ICE-FPSQ scale. The Swedish version of the ICE-FPSQ was found to be reliable and valid in this context. Reliability was tested by analyzing internal consistency through Cronbach’s α for the entire scale and the two subscales. Test-retest was performed by calculating intra-class correlation, and the results showed satisfactory scale stability over time. The results from the validity test illustrated an acceptable model fit of the Swedish version.

Conclusion. This study, by psychometrically testing an instrument for Swedish conditions, has provided an instrument for measuring families’ experience of cognitive and emotional support from nurses to families in Sweden. Additionally, the present study found while testing this instrument that nurses at four pediatric cardiac outpatient clinics only sparingly offered family-centered care to the parents.

Relevance to clinical practice. The Swedish version of ICE-FPSQ can be considered useful to measure the effects of family-centered support interventions in the future.