IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v17y2020i24p9326-d461511.html
   My bibliography  Save this article

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

Listed:
  • 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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/17/24/9326/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/17/24/9326/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Gagnon, A.J. & Zimbeck, M. & Zeitlin, J., 2009. "Migration to western industrialised countries and perinatal health: A systematic review," Social Science & Medicine, Elsevier, vol. 69(6), pages 934-946, September.
    2. Larsen, Daniel L. & Attkisson, C. Clifford & Hargreaves, William A. & Nguyen, Tuan D., 1979. "Assessment of client/patient satisfaction: Development of a general scale," Evaluation and Program Planning, Elsevier, vol. 2(3), pages 197-207, January.
    3. Li‐Ping Kong & Yan Cui & Yu‐Fang Qiu & Shu‐Ping Han & Zhang‐Bin Yu & Xi‐Rong Guo, 2013. "Anxiety and depression in parents of sick neonates: a hospital‐based study," Journal of Clinical Nursing, John Wiley & Sons, vol. 22(7-8), pages 1163-1172, April.
    4. Ginna Porat-Zyman & Orit Taubman – Ben-Ari & Jacob Kuint & Iris Morag, 2019. "Personal Growth 4 Years After Premature Childbirth: The Role of Change in Maternal Mental Health," Journal of Happiness Studies, Springer, vol. 20(6), pages 1739-1750, August.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Baronet, Anne-Marie & Gerber, Gary J., 1997. "Client satisfaction in a community crisis center," Evaluation and Program Planning, Elsevier, vol. 20(4), pages 443-453, November.
    2. Maxime Eslier & Catherine Deneux-Tharaux & Priscille Sauvegrain & Thomas Schmitz & Dominique Luton & Laurent Mandelbrot & Candice Estellat & Elie Azria, 2020. "Association between Migrant Women’s Legal Status and Prenatal Care Utilization in the PreCARE Cohort," IJERPH, MDPI, vol. 17(19), pages 1-14, September.
    3. Runtang Meng & Jingjing Li & Yunquan Zhang & Yong Yu & Yi Luo & Xiaohan Liu & Yanxia Zhao & Yuantao Hao & Ying Hu & Chuanhua Yu, 2018. "Evaluation of Patient and Medical Staff Satisfaction regarding Healthcare Services in Wuhan Public Hospitals," IJERPH, MDPI, vol. 15(4), pages 1-17, April.
    4. Marlene De Fabritiis & Federica Trisolini & Gloria Bertuletti & Ionut Daniel Fagadau & Davide Ginelli & Katiuscia Pia Lalopa & Lisa Peverelli & Alessia Pirola & Gaia Sala & Marta Maisto & Fabio Madedd, 2022. "An Internet-Based Multi-Approach Intervention Targeting University Students Suffering from Psychological Problems: Design, Implementation, and Evaluation," IJERPH, MDPI, vol. 19(5), pages 1-15, February.
    5. Nor Azmaniza Azizam & Siti Noorsuriani Maon & Leny Suzana & Nor Intan Shamimi Abdul Aziz, 2018. "Factors Influencing Selected Health Outcome among Patients Attending Universiti Teknologi MARA Medical Centre," International Journal of Academic Research in Business and Social Sciences, Human Resource Management Academic Research Society, International Journal of Academic Research in Business and Social Sciences, vol. 8(7), pages 500-511, July.
    6. Weiler, Lindsey M. & Hanson, Alexandra N. & Busse, Claire & Aronson, Emma & Neiman, Patti J., 2024. "The need and acceptability of a youth mental health mentoring model to supplement adolescent outpatient mental health services," Children and Youth Services Review, Elsevier, vol. 161(C).
    7. Calsyn, Robert J. & Morse, Gary A. & Klinkenberg, W. Dean & Trusty, Michael L., 1997. "Reliability and validity of self-report data of homeless mentally ill individuals," Evaluation and Program Planning, Elsevier, vol. 20(1), pages 47-54, February.
    8. Patricia Otero & Isabel Hita & Ángela J. Torres & Fernando L. Vázquez, 2020. "Brief Psychological Intervention Through Mobile App and Conference Calls for the Prevention of Depression in Non-Professional Caregivers: A Pilot Study," IJERPH, MDPI, vol. 17(12), pages 1-15, June.
    9. Phillimore, Jenny, 2016. "Migrant maternity in an era of superdiversity: New migrants' access to, and experience of, antenatal care in the West Midlands, UK," Social Science & Medicine, Elsevier, vol. 148(C), pages 152-159.
    10. Sarah Fredsted Villadsen & Hodan Jama Ims & Anne-Marie Nybo Andersen, 2019. "Universal or Targeted Antenatal Care for Immigrant Women? Mapping and Qualitative Analysis of Practices in Denmark," IJERPH, MDPI, vol. 16(18), pages 1-11, September.
    11. Parvin Pooremamali & Mona Eklund, 2017. "Well-being and perceptions of everyday activities among those who attend community-based day centres for people with mental illness in Sweden – Does an immigrant background make a difference?," International Journal of Social Psychiatry, , vol. 63(6), pages 539-549, September.
    12. Martinson, Melissa L. & Tienda, Marta & Teitler, Julien O., 2017. "Low birthweight among immigrants in Australia, the United Kingdom, and the United States," Social Science & Medicine, Elsevier, vol. 194(C), pages 168-176.
    13. Kane, Robert J., 2011. "The ecology of unhealthy places: Violence, birthweight, and the importance of territoriality in structurally disadvantaged communities," Social Science & Medicine, Elsevier, vol. 73(11), pages 1585-1592.
    14. Kholodenko, A.L. & Beyerlein, A.L., 1988. "Strong coupling solution of the asymmetric electrolyte problem: Field-theoretic approach," Physica A: Statistical Mechanics and its Applications, Elsevier, vol. 154(1), pages 140-156.
    15. Perreault, Michel & White, Noé Djawn & Fabrès, Éric & Landry, Michel & Anestin, Annélie S. & Rabouin, Daniel, 2010. "Relationship between perceived improvement and treatment satisfaction among clients of a methadone maintenance program," Evaluation and Program Planning, Elsevier, vol. 33(4), pages 410-417, November.
    16. Lujie Deng & Nurul Hanim Romainoor & Bolun Zhang, 2023. "Evaluation of the Usage Requirements of Hospital Signage Systems Based on the Kano Model," Sustainability, MDPI, vol. 15(6), pages 1-18, March.
    17. Janevic, T. & Savitz, D.A. & Janevic, M., 2011. "Maternal education and adverse birth outcomes among immigrant women to the United States from Eastern Europe: A test of the healthy migrant hypothesis," Social Science & Medicine, Elsevier, vol. 73(3), pages 429-435, August.
    18. Risser, Heather J. & Morford, Alexandra E. & Murphy, Ashley N. & Pinkerton, Linzy M. & Law, Clara & Yang, Yexinyu & Hersch, Emily & Wisner, Katherine L. & Boisseau, Christina L., 2024. "Feasibility and acceptability of a family navigator program to support foster parents of youth with mental health concerns," Children and Youth Services Review, Elsevier, vol. 160(C).
    19. Ramraj, Chantel & Pulver, Ariel & Siddiqi, Arjumand, 2015. "Intergenerational transmission of the healthy immigrant effect (HIE) through birth weight: A systematic review and meta-analysis," Social Science & Medicine, Elsevier, vol. 146(C), pages 29-40.
    20. Wenhua Wang & Elizabeth Maitland & Stephen Nicholas & Jeannie Haggerty, 2019. "Determinants of Overall Satisfaction with Public Clinics in Rural China: Interpersonal Care Quality and Treatment Outcome," IJERPH, MDPI, vol. 16(5), pages 1-12, February.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:17:y:2020:i:24:p:9326-:d:461511. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.