The life situation of a family with a chronically ill child and the family's experience of support provided by healthcare professionals in Finland

Abstract

Background: Chronic illness in children elicits emotions within the family, impacts family bonds, and reshapes family dynamics. Support from healthcare professionals is vital for facilitating family adaptation. The aim of this study is to describe the life situation of Finnish families with a chronically ill child and to enhance understanding of the types of support the families perceive. Methods: Data were collected in Finland as part of an international research project (2021−2023). 76 parents of chronically ill children completed an electronic survey. Analyses, conducted using IBM SPSS 29, included descriptive and inferential statistical methods. The ICE-FPSQ instrument assessed perceived support, generating composite variables for overall, emotional, and cognitive support. Association of background variables and adaptation with composite scores were examined using the Mann-Whitney U test. Results: Life situation: Among respondents, 54.7 % (n = 41) reported that the illness strains their family, and 47.4 % (n = 36) noted it has changed them as a family. However, 81.5 % (n = 62) felt the experience improved their coping abilities. Support from healthcare professionals: The median ICE-FPSQ composite score was 37 (n = 71, Q1 = 28, Q3 = 44; range: 14–70). For cognitive support, the median was 16 (Q1 = 12, Q3 = 18; range: 5–25), and for emotional support, it was 20 (Q1 = 14.3, Q3 = 26.5; range: 9–45). Mothers perceived receiving less support than fathers, and the child's hospitalization increased the perceived amount of support. Conclusion: Chronic illness places a considerable burden on families. Healthcare professionals can support families in adapting to life with a child who has a chronic illness.