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Parents’ journey caring for a preterm infant until discharge from hospital‐based neonatal home care—A challenging process to cope with

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  • Pia Lundqvist
  • Janne Weis
  • Bengt Sivberg

Abstract

Aims and objectives To present parents’ lived experience of having a preterm infant cared for at the neonatal unit until discharge from hospital‐based neonatal home care (HNHC). Background Becoming a parent to a preterm infant has been reported as an experience that may influence the parent's lifeworld also after discharge. Interventions have been implemented at the NICUs, for example introduction of family‐centred care aiming to reduce parent–infant separation, increased integration of the parents, to support them in their altered parental role. Design A descriptive phenomenological interview study. Methods Six parent couples at a NICU in Sweden were included and interviewed individually after discharge from HNHC. The interviews were analysed from the perspective of caring sciences using a descriptive phenomenological method. The study followed the consolidated criteria for reporting qualitative research (COREQ) checklist. Result The journey from birth to discharge from hospital‐based neonatal home care affected the parents’ lifeworld. The parents’ experiences differed. Mothers experienced more physiological reactions that triggered feelings of existential loneliness and guilt and difficulties in combining the role of mother with partner. The fathers faced conflicts managing their partners’ demands, family challenges and employers who claimed their time and energy, which negatively affected their transition into fatherhood. Both mothers and fathers experienced ambivalent feelings in the relationships with the professional staff, which was more strongly expressed by the mothers. Conclusion It is important for healthcare providers to help parents clarify their individual needs and values in caring for a preterm infant to help them achieve parental and family well‐being. Relevance to clinical practice These findings can guide healthcare providers to help parents improve care for their preterm infants in the NICU. Integrating a person‐centred approach such as supportive person‐centred dialogues focused on parents’ individual needs might be one way to support parents.

Suggested Citation

  • Pia Lundqvist & Janne Weis & Bengt Sivberg, 2019. "Parents’ journey caring for a preterm infant until discharge from hospital‐based neonatal home care—A challenging process to cope with," Journal of Clinical Nursing, John Wiley & Sons, vol. 28(15-16), pages 2966-2978, August.
  • Handle: RePEc:wly:jocnur:v:28:y:2019:i:15-16:p:2966-2978
    DOI: 10.1111/jocn.14891
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    References listed on IDEAS

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    1. Livio Provenzi & Elena Santoro, 2015. "The lived experience of fathers of preterm infants in the Neonatal Intensive Care Unit: a systematic review of qualitative studies," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(13-14), pages 1784-1794, July.
    2. Lupton, Deborah & Fenwick, Jennifer, 2001. "'They've forgotten that I'm the mum': constructing and practising motherhood in special care nurseries," Social Science & Medicine, Elsevier, vol. 53(8), pages 1011-1021, October.
    3. Suza Trajkovski & Virginia Schmied & Margaret Vickers & Debra Jackson, 2012. "Neonatal nurses’ perspectives of family‐centred care: a qualitative study," Journal of Clinical Nursing, John Wiley & Sons, vol. 21(17‐18), pages 2477-2487, September.
    4. Dua'a Fayiz Al Maghaireh & Khatijah Lim Abdullah & Chong Mei Chan & Chua Yan Piaw & Mariam Mofleh Al Kawafha, 2016. "Systematic review of qualitative studies exploring parental experiences in the Neonatal Intensive Care Unit," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(19-20), pages 2745-2756, October.
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    2. Rose-Marie Lindkvist & Annica Sjöström-Strand & Kajsa Landgren & Björn A. Johnsson & Pernilla Stenström & Inger Kristensson Hallström, 2021. "“In a Way We Took the Hospital Home”—A Descriptive Mixed-Methods Study of Parents’ Usage and Experiences of eHealth for Self-Management after Hospital Discharge Due to Pediatric Surgery or Preterm Bir," IJERPH, MDPI, vol. 18(12), pages 1-13, June.

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