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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

Author

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  • Erika Baraldi

    (Department of Special Education, Stockholm University, 106 91 Stockholm, Sweden)

  • Mara Westling Allodi

    (Department of Special Education, Stockholm University, 106 91 Stockholm, Sweden)

  • Ann-Charlotte Smedler

    (Department of Psychology, Stockholm University, 106 91 Stockholm, Sweden)

  • Björn Westrup

    (Department of Women’s and Children’s Health, Karolinska Institutet, 171 77 Stockholm, Sweden)

  • Kristina Löwing

    (Department of Women’s and Children’s Health, Karolinska Institutet, 171 77 Stockholm, Sweden
    Karolinska University Hospital Functional Area Occupational Therapy and Physiotherapy, Allied Health Professionals Function, 171 76 Stockholm, Sweden)

  • Ulrika Ådén

    (Department of Women’s and Children’s Health, Karolinska Institutet, 171 77 Stockholm, Sweden
    Karolinska University Hospital Neonatal Unit, 171 76 Stockholm, Sweden)

Abstract

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.

Suggested Citation

  • Erika Baraldi & Mara Westling Allodi & Ann-Charlotte Smedler & Björn Westrup & Kristina Löwing & Ulrika Ådén, 2020. "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," IJERPH, MDPI, vol. 17(24), pages 1-26, December.
    • Handle: RePEc:gam:jijerp:v:17:y:2020:i:24:p:9326-:d:461511
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    References listed on IDEAS

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    1. Annalisa Guarini & Miguel Pérez Pereira & Anneloes van Baar & Alessandra Sansavini, 2021. "Special Issue: Preterm Birth: Research, Intervention and Developmental Outcomes," IJERPH, MDPI, vol. 18(6), pages 1-4, March.
    2. Natascha Schuetz Haemmerli & Liliane Stoffel & Kai-Uwe Schmitt & Jeannine Khan & Tilman Humpl & Mathias Nelle & Eva Cignacco, 2022. "Enhancing Parents’ Well-Being after Preterm Birth—A Qualitative Evaluation of the “Transition to Home” Model of Care," IJERPH, MDPI, vol. 19(7), pages 1-20, April.
    3. Friederike Barbara Haslbeck & Lars Schmidli & Hans Ulrich Bucher & Dirk Bassler, 2021. "Music Is Life—Follow-Up Qualitative Study on Parental Experiences of Creative Music Therapy in the Neonatal Period," IJERPH, MDPI, vol. 18(12), pages 1-20, June.

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