Life Situation of a Caregiver of a Child with Congenital Heart Defect And/or Other Cardiac Problems: Structure and Preliminary Validation of a New Questionnaire

Overview

Journal Front Psychol

Date 2023 Jul 3

PMID 37397292

Authors

Ewelina Kolarczyk

Aleksandra Morka

Kamil Baranski

Leslaw Szydlowski

Affiliations

Soon will be listed here.

Abstract

Background: Illness in a child with cardiac disease causes stress, brings additional responsibilities, reorganizes family life, and changes the functioning of the family.

Aim: This study aimed to validate a new questionnaire evaluating the life situations of caregivers/parents of children with congenital heart disease (CHD) and/or other cardiac diseases (OCD).

Materials And Methods: The questionnaire comprised 10 questions aimed at assessing the life situation of an ill child's caregiver in two main areas: personal and spiritual. The total score of the questionnaire assessing the life situation of the caregiver of a child with a CHD and/or OCD can range from 0 to 32 points, with scores <26 indicating a poor, 25 to 32 indicating an average, and >32 indicating a good level of life situation in the personal sphere of the caregiver. The questionnaire was assessed using Cronbach's alpha tests, and repeatability was assessed using Cohen's Kappa test (retest) within a time interval of two to 4 weeks from the first measurement.

Results: The research covered 50 respondents. Cohesion in the personal sphere obtained a satisfactory value of Cronbach's = 0.72, in the spiritual sphere: Cronbach's = 0.83, and the result common for both sections was: Cronbach's = 0.66.

Conclusion: The Life Situation Assessment Questionnaire for caregivers of children with CHD and OCD is a reliable and homogeneous tool for measuring the functioning of parents in the event of a child's illness.

Citing Articles

Family caregiver frailty in adult congenital heart disease is overlooked: A call to action.

Magon A, Flocco S, Schianchi L, Chessa M, Ciofi D, Angileri S Int J Cardiol Congenit Heart Dis. 2025; 19:100567.

PMID: 39901951 PMC: 11788724. DOI: 10.1016/j.ijcchd.2025.100567.

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