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Parents’ Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0002-5285-0790
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0003-2396-4710
Stockholm University, Faculty of Social Sciences, Department of Psychology, Clinical psychology.
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2020 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 17, no 24, article id 9326Article in journal (Refereed) Published
Abstract [en]

With increasing survival rates of children born extremely preterm (EPT), before gestational week 28, the post-discharge life of these families has gained significant research interest. Quantitative studies of parental experiences post-discharge have previously reported elevated levels depressive symptoms, posttraumatic stress-disorder and anxiety among the parents. The current investigation aims to qualitatively explore the situation for parents of children born EPT in Sweden during the first year at home. Semi-structured interviews were performed with 17 parents of 14 children born EPT; eight parents were from an early intervention group and nine parents from a group that received treatment as usual, with extended follow-up procedures. Three main themes were identified using a thematic analytic approach: child-related concerns, the inner state of the parent, and changed family dynamics. Parents in the intervention group also expressed themes related to the intervention, as a sense of security and knowledgeable interventionists. The results are discussed in relation to different concepts of health, parent–child interaction and attachment, and models of the recovery processes. In conclusion, parents describe the first year at home as a time of prolonged parental worries for the child as well as concerns regarding the parent’s own emotional state.

Place, publisher, year, edition, pages
2020. Vol. 17, no 24, article id 9326
Keywords [en]
early intervention, follow-up, home-visit program, infancy, parent-child interaction, parenthood, preterm infant, strength-based approach, qualitative research
National Category
Psychology
Research subject
Psychology
Identifiers
URN: urn:nbn:se:su:diva-187556DOI: 10.3390/ijerph17249326ISI: 000602829100001OAI: oai:DiVA.org:su-187556DiVA, id: diva2:1509386
Projects
Stockholm Preterm Interaction-Based Intervention SPIBIAvailable from: 2020-12-13 Created: 2020-12-13 Last updated: 2024-04-29Bibliographically approved
In thesis
1. An Interaction-Based Early Intervention During the First Year of Life: Targeting Infants Born Extremely Preterm and Their Parents
Open this publication in new window or tab >>An Interaction-Based Early Intervention During the First Year of Life: Targeting Infants Born Extremely Preterm and Their Parents
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The first thousand days from conception are crucial for future learning and development throughout life. During the infant year, several sensitive periods for sensorimotor, cognitive and social development coincide, making the period particularly suitable for early intervention (EI). From a special educational perspective, the social and physical environment of a child may either support or hinder future growth. Optimal early learning environments include environmental enrichment, reduced toxic stress and strengths-based support of parent-child interaction.

Being born extremely preterm (EPT <28 gestational weeks) is a biological risk factor, increasing the risk for future disability, academic difficulties and social challenges. The parents are also negatively affected by prematurity. Sweden offers highly specialized neonatal care from 22 GW, resulting in a new population of surviving children.

The aim of this thesis is to evaluate an interaction-based and strengths-based EI for infants born EPT and their parents in a Swedish context. The Stockholm Preterm Interaction-Based Intervention (SPIBI) consists of 10 home visits led by a trained interventionist during the first year at home, focusing on parent-child interaction, family strengths and reduction of toxic stress. The control group received an extended treatment as usual follow-up program (TAU+). The thesis has a mixed methods design and includes three studies.

Study I presents the protocol, including a description of the planning, formulation, theoretical background, theory of change, interventionist training, recruitment, randomization and implementation of the SPIBI. Study II reports the primary outcome of the RCT (N=130, intervention=66 vs. controls=64) and their parents regarding parent-child interaction as measured with the Emotional Availability Scale (EAS) at 12 months corrected age (CA). The EAS consists of the six dimensions: sensitivity, structuring, non-intrusiveness, non-hostility, child responsiveness and child involvement. No significant effect of the EAS at 12 months CA related to the SPIBI was found. In the secondary analysis, analysis of covariances for all EAS dimensions were tested with predefined medical, social, and psychological moderators. The model with the best fit was one for the EAS dimension child involvement (adj R2=.463). A significant effect modifier shows that the SPIBI enhances child involvement in families where the mothers rate themselves as depressed at discharge (F(1, 65)=5.499, p=.023).The parental experience during the first year at home with or without the SPIBI was qualitatively analyzed and reported in Study III (n=17). The results showed that child-related medical concerns were still present a year post-discharge, and that the premature birth experience still affected the parental inner state and family dynamics. Parents in the intervention group (n=8) also pointed out the security the knowledgeable interventionists gave them, while some parents described the SPIBI as important but not necessary.

Overall, this thesis adds to the understanding of the first year at home with a child born EPT. An interaction-based intervention in the home environment is feasible in Sweden. It is possible to unite different professions in an EI in a special educational context. The tested intervention does not affect the emotional availability at 1 year CA, but findings from secondary analyses prompt further research on specific subgroups, particularly families with depressed mothers. 

Place, publisher, year, edition, pages
Stockholm: Department of Special Education, Stockholm University, 2024. p. 134
Keywords
Early intervention, emotional availability, extreme preterm birth, parental experiences, parent-child interaction, home-visiting program, parental mental health, parental support, post-discharge intervention, randomized control trial
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-227919 (URN)978-91-8014-745-3 (ISBN)978-91-8014-746-0 (ISBN)
Public defence
2024-05-24, Auditorium 4, house 2, Albano, Albanovägen 18 and online via Zoom, public link is available through the department website, Stockholm, 13:00 (English)
Opponent
Supervisors
Available from: 2024-04-29 Created: 2024-04-03 Last updated: 2024-04-18Bibliographically approved

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Baraldi, ErikaWestling Allodi, MaraSmedler, Ann-CharlotteWestrup, BjörnLöwing, KristinaÅdén, Ulrika

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