Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
Background and Objectives: Various interventions aim to reduce obesity and promote healthy lifestyles among different cultural groups.Methods: We have conducted a systematic literature review, following PRISMA guidelines (registered at https://doi.org/10.17605/OSF.IO/HB9AX), to explore profiles of cultural adaptation and parenting approach of lifestyle interventions for families with young children (1-4 years).Results: Our search (in CINAHL, ERIC, PsycINFO, PubMed, Scopus, and SSCI) yielded 41 studies reporting 31 interventions. Drawing on Intervention Mapping, we applied a newly developed framework with various indicators of cultural adaptation and a parenting approach to analyze interventions. Our review shows clear differences in the level of cultural adaptation. A categorical principal component analysis revealed 6 different empirical profiles of cultural adaptation.Conclusions: Based on our profiles, we discuss how cultural adaptation can be strengthened in the design of future early interventions aimed at promoting a healthy lifestyle.
MULTIFILE
Background and aim: Moderate preterm (MP) birth is associated with an increased risk of developmental problems. However, post-discharge support for this group is scarce. The aim of this study was to evaluate the feasibility of a post-discharge parenting program (TOP program) for MP infants. Three feasibility dimensions were evaluated (1) recruitment capability and compliance, (2) intervention acceptability, and (3) limited efficacy testing. Methods: A group of MP infants with a gestational age (GA) between 320/7‐346/7 weeks and their parents received six home visits by a TOP interventionist until 6 months corrected age (CA). A pre-posttest intervention design with quantitative and qualitative measures was used. Recruitment capability and compliance, acceptability, and satisfaction with the intervention were evaluated using a questionnaire, checklists, interviews, and a focus group. Infant socio-emotional development, parental distress, self-efficacy, and reflective functioning were measured with questionnaires. Observation measurements were used for infant motor development and parental sensitivity. Results: Thirty-two families completed the six home visits. The satisfaction rate (scale 0–10) was remarkably high (Mean 9.4, range: 8–10). Parents reported that the program was suitable, enhanced their understanding of their infants' developmental needs, and increased their self-efficacy. The infants showed age-appropriate motor and socio-emotional development post-intervention. Parental self-efficacy, reflective functioning, and sensitivity improved from pre to post intervention, with small to large effect sizes. Conclusion: The study demonstrated high compliance, acceptability, and satisfaction with the TOP program for MP infants with promising infant and parent outcomes. This study contributes to the preparatory work prior to a larger scale evaluation and dissemination.
