Family Management Styles and Associated Factors for Children after Palliative Surgery for Complex Congenital Heart Disease

Abstract

Background The family management style directly affects the prognosis of children with complex congenital heart disease (CCHD) after palliative surgery. But it is still unsatisfactory for these children in China. Research on family management of these children based on the Family Management Style Framework in foreign countries has achieved certain achievements while domestic research is still in its infancy. Objective To explore the family management style and its factors in children with CCHD after palliative surgery. Methods This study is a cross-sectional study. From May to September 2021, a total of 245 children after palliative surgery for CCHD and their families were selected from Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine from January 1, 2016 to August 31, 2021 by convenient sampling. The following questionnaires were used for collecting information from the major caregiver of the children (father or mother) : the Chinese version of the Family Management Measure (FaMM-C), the Chinese version of the Family Assessment Device (FAD-C), the Chinese version of the Parenting Stress Index Short Form (PSI-SF-C), and the socioeconomic status index. The children's height and body weight were measured to assess the prevalence of malnutrition, and their cardiac functions were also evaluated. The family management style of the children's families was classified by clustering the score of each dimension of FaMM-C using clustering analysis. Multinomial Logistic regression was used to analyze the factors associated with different types of family management style. Results Four types of family management style were identified: the normal-perspective and collaborative〔28.6% (70/245) 〕, the chaotic and strenuous〔11.0% (27/245) 〕, the confident and concerning〔21.6% (53/245) 〕and the laissez faire〔38.8% (95/245) 〕. When the normal-perspective and collaborative group compared to the other three groups: the higher the score of the PSI-SF-C, the more inclined the family management was to the normal-perspective and collaborative style (P<0.05). Meanwhile the higher the score of the FAD-C, the less inclined the family management was to the normal-perspective and collaborative style (P<0.05). Moreover, compared the laissez faire group with the normal-perspective and collaborative group: the family of male children was more inclined to the normal perspective and collaborative style (P<0.05) ; the older the children were at follow-up or the time from surgery to follow-up of those children was less than one year, the less inclined the family management was to the normal perspective and collaborative style (P<0.05) . Conclusion Family caregivers cope with the situation of children with CCHD after palliative surgery through four different management styles, which are shaped by multiple factors from children and families. Findings of this study suggest the necessity to carry out long-term care for the children adopting a family-centered care model, and to develop individualized interventions for the families to establish a scientific and effective family management style based on the type of family management style and its related factors.

Keywords

• congenital heart disease|palliative surgery|children|family management styles|cluster analysis|root cause analysis