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Experiences of parents whose school-aged children were treated with therapeutic hypothermia as newborns: A focus
Sari Kokkonen Nassef1, Mats Blennow Bohlin1,2, Maria Jirwe3,4
1Department of Clinical Science, Intervention and Technology, Division of Paediatrics, Karolinska Institutet, Stockholm, Sweden.
Insights
Parents experienced long-lasting psychological effects from therapeutic hypothermia (TH) for their newborns after perinatal asphyxia. Improved communication and support are crucial for families undergoing TH treatment.
Area of Science:
- Neonatal care
- Developmental pediatrics
- Psychological impact of medical treatment
Background:
- Therapeutic hypothermia (TH) is a standard treatment for newborns with perinatal asphyxia to improve neurodevelopmental outcomes.
- Understanding the long-term parental experience of TH is essential for comprehensive care.
Purpose of the Study:
- To describe parents' long-term experiences (10-13 years post-treatment) with therapeutic hypothermia for their newborn infants following perinatal asphyxia.
- To identify the lasting psychological and daily life challenges faced by parents.
Main Methods:
- Qualitative descriptive study utilizing focus groups (FGs) with parents.
- Fifteen parents of infants treated with TH between 2007-2009 participated in five FGs.
- Verbatim FG transcripts were analyzed using a framework approach, adhering to SRQR guidelines.
Main Results:
- Parents reported significant psychological hardships and struggles in everyday life, extending years after TH treatment.
- Key themes included concern and gratitude for treatment, insufficient information, and the ongoing impact of unprocessed experiences.
- Challenges persisted in school and daily life, highlighting the need for sustained support.
Conclusions:
- Therapeutic hypothermia profoundly affects parents psychologically, with effects lasting years beyond the initial treatment.
- Ineffective communication from healthcare professionals and schools contributed to parental distress.
- Proactive identification of infant and family needs before discharge is vital to prevent long-term concerns.
Aim:
To describe parents' past and present experiences of their newborn infant's therapeutic hypothermia (TH) treatment after perinatal asphyxia 10-13 years after the event.
Background:
Newborn infants are treated with TH following perinatal asphyxia to improve neurodevelopmental outcomes.
Design:
A qualitative descriptive design using focus groups (FGs).
Methods:
Twenty one parents to 15 newborn infants treated with TH between 2007 and 2009 participated in five FGs. The FGs were transcribed verbatim and analysed using framework approach. The SRQR checklist was followed for study reporting.
Results:
Two main categories were identified: hardships and reliefs during TH treatment and struggles of everyday life. Both categories include three subcategories, the first: (1) concern and gratitude for the unrecognized treatment, (2) insufficiency of information and proposed participation and (3) NICU nurses instilled security and hope. The second with subcategories: (1) unprocessed experiences of the TH treatment, (2) later challenges at school and (3) existential and psychological challenges in everyday life.
Conclusion:
TH of their newborns affected the parents psychologically not only during the treatment, but lasted months and years later. Information and communication with health care professionals and school management were inefficient and inadequate. The parents' concerns could be prevented by an improved identification and understanding of the problems and the needs of the infants and their families before discharge.
Relevance For Clinical Practice:
Through more personalized and efficient preparation and communication by the nursing staff before discharge, many of the parents' worries and problems could be reduced. Check-up of parents' needs of psychosocial support before and after discharge and offering counselling should become routine. Also, nurses at Well-Baby Clinics and in school health care should receive knowledge about TH treatment and the challenges the children and the parents experience.
Patient Or Public Contribution:
Participation of parents was limited to the data provided through interviews.
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