Parental experiences of therapeutic hypothermia in their newborns and quality of life of the children in early adolescence

The incidence of perinatal asphyxia, or intrapartum-related conditions, in high- resource countries is 1-3/1000 live births. Perinatal asphyxia may cause hypoxic- ischaemic encephalopathy (HIE) that can lead to cerebral malfunctioning, but treatment with therapeutic hypothermia (TH) improves neurological outcomes and survival in the affected infants. During TH, the infant's body temperature is lowered to a target temperature of 33.5° C within six hours from birth and for 72 hours. During this time and in most cases, parents cannot hold their infants due to the complexity of medical technical equipment and the staff's caution, as the holding during the TH treatment requires nearby supervision from the staff.

This thesis consists of three qualitative studies of parental experiences of TH and one quantitative study exploring the correlation between motor performance, health-related quality of life (HRQOL), and self-esteem in early adolescents having received TH as newborns. The first two studies were performed within one year of the infant's birth, and the third study 10 to 13 years afterwards. In the first two studies parents described their emotional situation, their solutions to adapt to the situation, and how the experience changed their approach towards their existential being. The phase after the rewarming was seen as a milestone where parents described a "rebirth moment" when the infant woke up and started to move and behave like a normal newborn baby. Although parents had trepidation about the prognosis, they appreciated the care given in the NICU where the caring philosophy of Family-centred care (FCC) had been implemented.

The second study showed that the staff had the competence and capacity to contribute to parental transition into parenthood of a newborn infant treated with TH. In the FGs, where data to the third study were obtained, parents described an insufficiency of participation and communication during their hospital stay in NICU. Despite the insufficiencies, nurses instilled hope and security in parents to cope with the difficulties and trials during the hospital stay. Additionally, parents' concerns and anxiety about their children's challenges in school and in their everyday lives were highlighted.

In the fourth study, the instruments MABC-2, PedsQL 4.0 and ITIA-2 were used. Motor function was assessed by a physiotherapist and HRQOL were self- reported by children who had been treated with TH due to neonatal HIE. Likewise, the children's HRQOL was proxy-reported by their parent. Self-esteem was also self-reported by these children. The results show that the median of the HRQOL reported by the children were lower Physical Functioning and School Functioning than proxy-reported by their parents. The median of Social and Emotional Functioning was equal in both children and parents. Only in the summary score of Psychosocial Health did the children report higher HRQOL. Parents reported a somewhat higher Total score of HRQOL than parents. There was no significant difference between the self-reported HRQOL Total score between boys and girls.

Significant positive correlations were found between the MABC-2 Total scores and parents' proxy-reports in all PedsQL 4.0 dimensions. Parents of children having existing motor difficulties or at risk of motor difficulties proxy-reported significantly lower HRQOL than parents of children without motor difficulties (median= 69.0 vs 91.85). However, the children reported a high level of HRQOL and higher self-esteem than the average test norm. Motor difficulties did not affect children's HRQOL or self-esteem.

List of scientific papers

I. Experiences of parents whose newborns undergo hypothermia treatment following perinatal asphyxia. Kokkonen Nassef, S., Blennow Bohlin, M. & Jirwe, M. Journal of Obstetric, Gynecologic & Neonatal Nursing. 2013; Jan-Feb;42(1):38-47. https://doi.org/10.1111/j.1552-6909.2012.01429.x

II. Parental viewpoints and experiences of therapeutic hypothermia in a neonatal intensive care unit implemented with Family-Centred Care. Kokkonen Nassef, S., Blennow Bohlin, M. & Jirwe, M. Journal of Clinical Nursing. 2020; Nov;29(21-22):4194-4202. https://doi.org/10.1111/jocn.15448

III. Experiences of parents whose school-aged children were treated with therapeutic hypothermia as newborns: A focus group study. Kokkonen Nassef, S., Blennow Bohlin, M. & Jirwe, M. Nursing Open. 2023; Nov;10(11):7411-7421. https://doi.org/10.1002/nop2.1994

IV. Motor performance, health-related quality of life and self- esteem in early adolescence after therapeutic hypothermia following hypoxic-ischemic encephalopathy, a cross-sectional study. Eriksson Westblad, M .* , Kokkonen Nassef, S .* , Blennow Bohlin, M., Jirwe, M. &, Lindström K. 2024. *Shared first authorship. [Manuscript]