Parental viewpoints and experiences of therapeutic hypothermia in a neonatal intensive care unit implemented with Family‐Centred Care

Nassef, Sari Kokkonen; Blennow, Mats; Jirwe, Maria

doi:10.1111/jocn.15448

Cited by 6 publications

(14 citation statements)

References 21 publications

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“…Previous qualitative studies exploring parents' experiences of their child receiving therapeutic hypothermia treatment have been conducted in the USA and Sweden. [11][12][13][14] However, the focus of COHESION is to develop a COS for all treatments of neonatal encephalopathy across all jurisdictions, for all treatments. 6 This prompted the team to conduct primary qualitative research, with participants from both HiC and LMiCs, as opposed to a systematic review of previous qualitative research, as had been done in other COS development.…”

Section: What This Study Addsmentioning

confidence: 99%

“…We planned to interview 8-12 parents/caregivers in HiCs and 4-6 parents/caregivers in each LMiC participating in the study (Kenya and Pakistan), informed by the numbers interviewed in previous qualitative studies. [11][12][13][14] We were mindful that the concept of conceptual saturation 18 (ie, when no new outcomes were identified as the interviews and analysis progressed) would guide the final interview numbers.…”

Section: Recruitment Strategymentioning

confidence: 99%

“…Previous qualitative studies exploring parents’ experiences of their child receiving therapeutic hypothermia treatment have been conducted in the USA and Sweden 11–14. However, the focus of COHESION is to develop a COS for all treatments of neonatal encephalopathy across all jurisdictions, for all treatments 6.…”

Section: Introductionmentioning

confidence: 99%

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Core outcomes in neonatal encephalopathy: a qualitative study with parents

Quirke

Ariff

Battin

et al. 2022

bmjpo

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ObjectiveTo identify the outcomes considered important to parents or caregivers of infants diagnosed with neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia in high-income and low- to middle-income countries (LMiCs), as part of the outcome-identification process in developing a core outcome set (COS) for the treatment of neonatal encephalopathy.DesignA qualitative study involving 25 semistructured interviews with parents or other family members (caregivers) of infants who were diagnosed with, and treated for, neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia.SettingInterviews were conducted in high-income countries (HiCs) (n=11) by Zoom video conferencing software and in LMiCs (n=14) by phone or face to face.FindingsParents identified 54 outcomes overall, which mapped to 16 outcome domains. The domains identified were neurological outcomes, respiratory outcomes, gastrointestinal outcomes, cardiovascular outcomes, motor development, cognitive development, development (psychosocial), development (special senses), cognitive development, development (speech and social), other organ outcomes, survival/living outcomes, long-term disability, hospitalisation, parent-reported outcomes and adverse events.ConclusionsThis study provides insight into the outcomes that parents of infants diagnosed with neonatal encephalopathy have identified as the most important, to be considered in the process of developing a COS for the treatment of neonatal encephalopathy. We also provide description of the processes employed to ensure the inclusion of participants from LMiCs as well as HiCs.

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Section: What This Study Addsmentioning

confidence: 99%

Section: Recruitment Strategymentioning

confidence: 99%

See 1 more Smart Citation

Core outcomes in neonatal encephalopathy: a qualitative study with parents

Quirke

Ariff

Battin

et al. 2022

bmjpo

View full text Add to dashboard Cite

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“…Other studies exploring parents' perceptions of therapeutic hypothermia for HIE confirm parents' concerns about bonding following their traumatic experiences and wanting more active involvement with their infant, more information and emotional support from staff 4,7,8,10 . Delivering therapeutic hypothermia in the context of family‐centred care practices in the NICU will help parents' transition to parenthood by involving them in nursing care and decisions 19 . Enabling CoolCuddle to take place during therapeutic hypothermia will help to strengthen and enable family‐centred care practices for these infants in the NICU.…”

Section: Discussionmentioning

confidence: 95%

“… 4 , 7 , 8 , 10 Delivering therapeutic hypothermia in the context of family‐centred care practices in the NICU will help parents' transition to parenthood by involving them in nursing care and decisions. 19 Enabling CoolCuddle to take place during therapeutic hypothermia will help to strengthen and enable family‐centred care practices for these infants in the NICU. Facilitating such periods of cuddling cooled infants will facilitate parent–infant bonding, breastfeeding and perhaps reduce levels of postnatal depression amongst mothers.…”

Section: Discussionmentioning

confidence: 99%

‘Opportunity to bond and a sense of normality’: Parent and staff views of cuddling babies undergoing therapeutic hypothermia in neonatal intensive care: ‘CoolCuddle’

Ingram

Beasant

Odd

et al. 2022

Health Expectations

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Background: Currently, parents whose sick babies are undergoing three days of cooling therapy for hypoxic-ischaemic encephalopathy in neonatal intensive care units (NICUs) are not permitted to cuddle their cooled babies, due to concerns of warming the baby or dislodging breathing tubes or vascular catheters. Parents want to stay and care for their cooled babies and have reported that bonding is adversely affected when they are not permitted to hold them.Design and Participants: Qualitative interviews with 21 parents of cooled babies in NICU (11 mothers and 10 fathers) and 10 neonatal staff (4 consultants and 6 nurses) explored their views and experiences of an intervention to enable parents to cuddle their cooled babies (CoolCuddle). Thematic analysis methods were used to develop the themes and compare them between parents and staff.Results: Five themes were produced. Three themes were comparable between parents and staff: Closeness, a sense of normality and reassurance and support. An additional parent theme reflected their mixed feelings about initial participation as they were apprehensive, but felt that it was an amazing opportunity. Parents and staff described the closeness between parents and babies as important for bonding and breastfeeding. Fathers particularly appreciated the opportunity to hold and bond with their infants. Parents valued the reassurance and support received from staff, and the cuddles helped them feel more normal and more like a family at a very stressful time. In a final staff theme, they discussed the skills, number of staff and training needed to undertake CoolCuddle in NICU.Conclusions: Parents cuddling their babies during cooling therapy enhanced parent-infant bonding and family-centred care in NICU and was positively received.Adverse perinatal mental health, impaired mother-infant bonding and their effects on the establishment of breastfeeding may be ameliorated by introducing CoolCuddle.

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Experiences of parents whose school‐aged children were treated with therapeutic hypothermia as newborns: A focus group study

Kokkonen Nassef,

Blennow Bohlin,

Jirwe

2023

Nursing Open

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AimTo describe parents' past and present experiences of their newborn infant's therapeutic hypothermia (TH) treatment after perinatal asphyxia 10–13 years after the event.BackgroundNewborn infants are treated with TH following perinatal asphyxia to improve neurodevelopmental outcomes.DesignA qualitative descriptive design using focus groups (FGs).MethodsTwenty 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.ResultsTwo 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.ConclusionTH 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 PracticeThrough 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 ContributionParticipation of parents was limited to the data provided through interviews.

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Parental viewpoints and experiences of therapeutic hypothermia in a neonatal intensive care unit implemented with Family‐Centred Care

Abstract: This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Cited by 6 publications

References 21 publications

Core outcomes in neonatal encephalopathy: a qualitative study with parents

Core outcomes in neonatal encephalopathy: a qualitative study with parents

‘Opportunity to bond and a sense of normality’: Parent and staff views of cuddling babies undergoing therapeutic hypothermia in neonatal intensive care: ‘CoolCuddle’

Experiences of parents whose school‐aged children were treated with therapeutic hypothermia as newborns: A focus group study

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