Parents' information needs during the first year at home with their very premature born child; a qualitative study.

Objective: To obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant. Methods: We conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders. Results: Ten participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance. Conclusion: This study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care. Innovation: This study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.

Development and evaluation of a fidelity tool in a post-discharge responsive parenting intervention program for very preterm born children.

The TOP program is a fully implemented responsive parenting intervention for very preterm born infants. Fidelity monitoring of interventions is important for preserving program adherence, impact outcomes and to make evidence-based adaptations. The aim of this study was to develop a fidelity tool for the TOP program following an iterative and co-creative process and subsequently evaluate the reliability of the tool. Three consecutive phases were carried out. Phase I: Initial development and pilot testing two methods namely self-report and video based observation. Phase II: Adaptations and refinements. Phase III: Evaluation of the psychometric properties of the tool based on 20 intervention videos rated by three experts.The interrater reliability of the adherence and competence subscales was good (ICC.81 to .84) and varied from moderate to excellent for specific items (ICC between .51 and .98). The FITT displayed a high correlation (Spearman's rho.79 to.82) between the subscales and total impression item. The co-creative and iterative process resulted in a clinical useful and reliable tool for evaluating fidelity in the TOP program. This study offers insights in the practical steps in the development of a fidelity assessment tool which can be used by other intervention developers.

Mental health monitoring in parents after very preterm birth.

AIM: To evaluate parental mental health monitoring during follow-up care for very preterm (VPT) infants, describe symptoms of anxiety and depression and risk factors for mothers and fathers at 1 and 12 months of corrected age. METHODS: Parents completed the Hospital Anxiety and Depression Scale (HADS). Psychological symptoms and risk factors were analysed within and between mothers and fathers. RESULTS: In 4 years, the monitoring reached 1260 (48%) families. Of these, 693 mothers and 340 fathers (300 couples) completed the HADS twice. At 1 month, 22% and 15% of the mothers and 10% and 9% of the fathers, respectively, reported elevated symptoms of anxiety and depression. At 12 months, these rates were significantly reduced to 14% and 9% for mothers and 5% and 4% for fathers respectively. Within couples, anxiety and depression were positively associated. At 12 months, in 20% of the couples, one or both parents reported elevated symptoms. Risk factors were length of hospital stay, migration background, educational level and employment status. CONCLUSION: The mental health of parents of VPT infants improved, but elevated symptoms were still observed in 17% of included families after one year. Acknowledging and remediating parental mental health remain essential during follow-up care.