ObjectiveTo obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant.MethodsWe 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.ResultsTen 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.ConclusionThis 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.InnovationThis study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.
DOCUMENT
This thesis focuses on topics such as preterm birth, variation in gross motor development, factors that influence (premature) infant gross motor development, and parental beliefs and practices. By gaining insight into these topics, this thesis aims to contribute to clinical decision-making of paediatric physiotherapists together with parents, and with that shape early intervention.
DOCUMENT
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.
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.
DOCUMENT
While the importance of professional support following very preterm delivery (VP) is established, the parental experience of support still warrants deeper understanding. Evaluation of a Dutch one-year post-discharge responsive parenting intervention following VP suggested that parents with lower educational levels benefitted less from the program. This idiographic phenomenological study investigated the lived experiences of two mothers with differing educational backgrounds receiving professional support during hospitalization and post-discharge. In-depth interviews with the mothers were analyzed using Interpretative Phenomenological Analysis. We formulate three impressions: (1) How the mothers made sense of their experiences resonated with the findings of research on class differences in parenting. (2) The mothers valued professionals who struck a personalized balance between supporting their maternal agency and attending to their vulnerability and needs for help and perspective. (3) The mothers experienced greater trust in professionals who could suspend pre- conceived assumptions and take their personal characteristics into consideration. Practice suggestions are extrapolated for social work professionals. The study has relevance to educational diversity and recommends an overarching sensitivity to positionality in professional work with parents.
LINK
BACKGROUND AND AIMSParents of preterm born infants experience challenges when transitioninghome, including the struggle to feel confident in their capacity to parent.Attuned information provision is a prerequisite for self-efficacy and empowerment and has been linked to positive parenting outcomes. The internet is an important source to obtain information regarding topics like prematurity, development and specific health problems. However, parents experience problems to find and understand appropriate health information with respect to their preterm born infant. Especially parents with low health literacy skills. Therefore our aim is to develop an inclusive digital information platform for and in cocreation with parents of premature infants and paediatric physical therapists (eTOP).METHODSTo generate ideas and content for eToP module, we first conducted interviewswith parents (n=10) and performed three online co-creation sessions with parents (n=14) and paediatric physical therapists (N=8). The data were analyzed through an inductive thematic approach. The analyses resulted in several main topics. With respect to these topics, experts were consulted and asked to generate text-based information content. The information content was then reviewed by the research team and included in the first prototype of the eTOP module.RESULTS11 themes were identified to be important, including general health issues,motor development, regulation, feeding, sleeping, prematurity, generaldevelopment, long term outcomes, parenthood, going back to work andprofessionals.CONCLUSIONSBased on the topics we developed the first version of the eTOP module. Inthe next two months we will develop and test a second version which willbe presented at the EAPS congress.
DOCUMENT
Background: Current use of smartphone cameras by parents create opportunities for longitudinal home-video-assessments to monitor infant development. We developed and validated a home-video method for parents, enabling Pediatric Physical Therapists to assess infants’ gross motor development with the Alberta Infant Motor Scale (AIMS). The objective of the present study was to investigate the feasibility of this home-video method from the parents’ perspective. Methods: Parents of 59 typically developing infants (0–19 months) were recruited, 45 parents participated in the study. Information about dropout was collected. A sequential mixed methods design was used to examine feasibility, including questionnaires and semi-structured interviews. While the questionnaires inquired after the practical feasibility of the home-video method, the interviews also allowed parents to comment on their feelings and thoughts using the home-video method. Results: Of 45 participating parents, 34 parents returned both questionnaires and eight parents agreed to an interview. Parent reported effort by the infants was very low: the home-video method is perceived as similar to the normal routine of playing. The parental effort level was acceptable. The main constraint parents reported was time planning. Parents noted it was sometimes difficult to find the right moment to record the infant’s motor behavior, that is, when parents were both at home and their baby was in the appropriate state. Technical problems with the web portal, reported by 28% of the parents were also experienced as a constraint. Positive factors mentioned by parents were: the belief that the home videos are valuable for family use, receiving feedback from a professional, the moments of one-on-one attention and interaction with their babies. Moreover, the process of recording the home videos resulted in an increased parental awareness of, and insight into, the gross motor development of their infant. Conclusion: The AIMS home-video method is feasible for parents of typically developing children. Most constraints are of a practical nature that can be addressed in future applications. Future research is needed to show whether the home-video method is also applicable for parents with an infant at risk of motor development problems.
DOCUMENT
A key element in social development is interaction with others, and preterm infants have an increased risk for problems in this aspect. We aimed to gain additional insight into parents’ perception about their preterm child’s social interaction upon reaching school age. Parents informed us about their child being a little fighter, having issues of coping with their disabilities in social contexts, and how their child withdraws from situations that are overlystimulating. They also expressed their concerns about the future, how they encourage their child, and how they experience the transition to primary school. Parents’ experiences concerning the social interaction of their preterm child can be categorized into eight themes of processes in social interaction: child factors, self-regulation, real-time social interaction, long-term social interaction, parental factors, parenting, social environment, and social experiences. Our proposed model of social interaction in preterm infants visualizes theinterrelatedness between these themes in social interaction
DOCUMENT
The purpose of this study was a serial assessment of gross motor development of infants at risk is an established procedure in neonatal follow-up clinics. Assessments based on home video recordings could be a relevant addition. In 48 infants (1.5-19 months), the concurrent validity of 2 applications was examined using the Alberta Infant Motor Scale: (1) a home video made by parents and (2) simultaneous observation on-site by a pediatric physical therapist. Parents’ experiences were explored using a questionnaire.
DOCUMENT
Background: Poor motor skill competence may influence energy balance with childhood overweight as a result. Our aim was to investigate whether the age of motor milestone achievement has changed over the past decades and whether this change may contribute to the increasing trend observed in childhood overweight. Methods: Motor skill competence was assessed in children from the Young Netherlands Twin Register born between 1987 and 2007. Follow-up ranged from 4 up to 10 years. Weight and height were assessed at birth, 6 months, 14 months, and 2, 4, 7, and 10 years. Results: Babies born in later cohorts achieved their motor milestones ‘crawling’, ‘standing’, and ‘walkingunassisted’ later compared to babies born in earlier cohorts (N = 18,514, p <0.001). The prevalence of overweight at age 10 was higher in later cohorts (p = 0.033). The increase in overweight at age 10 was not explained by achieving motor milestones at a later age and this persisted after adjusting for gestational age, sex, and socioeconomic status. Conclusion: Comparing children born in 1987 to those born in 2007, we conclude that children nowadays achieve their motor milestones at a later age. This does not however, explain the increasing trend in childhood overweight.
DOCUMENT
