Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study

Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study | medRxiv /* */ /* */ <!-- <!-- /*! * yepnope1.5.4 * (c) WTFPL, GPLv2 */ (function(a,b,c){function d(a){return"[object Function]"==o.call(a)}function e(a){return"string"==typeof a}function f(){}function g(a){return!a||"loaded"==a||"complete"==a||"uninitialized"==a}function h(){var a=p.shift();q=1,a?a.t?m(function(){("c"==a.t?B.injectCss:B.injectJs)(a.s,0,a.a,a.x,a.e,1)},0):(a(),h()):q=0}function i(a,c,d,e,f,i,j){function k(b){if(!o&&g(l.readyState)&&(u.r=o=1,!q&&h(),l.onload=l.onreadystatechange=null,b)){"img"!=a&&m(function(){t.removeChild(l)},50);for(var d in y[c])y[c].hasOwnProperty(d)&&y[c][d].onload()}}var j=j||B.errorTimeout,l=b.createElement(a),o=0,r=0,u={t:d,s:c,e:f,a:i,x:j};1===y[c]&&(r=1,y[c]=[]),"object"==a?l.data=c:(l.src=c,l.type=a),l.width=l.height="0",l.onerror=l.onload=l.onreadystatechange=function(){k.call(this,r)},p.splice(e,0,u),"img"!=a&&(r||2===y[c]?(t.insertBefore(l,s?null:n),m(k,j)):y[c].push(l))}function j(a,b,c,d,f){return q=0,b=b||"j",e(a)?i("c"==b?v:u,a,b,this.i++,c,d,f):(p.splice(this.i++,0,a),1==p.length&&h()),this}function k(){var a=B;return a.loader={load:j,i:0},a}var l=b.documentElement,m=a.setTimeout,n=b.getElementsByTagName("script")[0],o={}.toString,p=[],q=0,r="MozAppearance"in l.style,s=r&&!!b.createRange().compareNode,t=s?l:n.parentNode,l=a.opera&&"[object Opera]"==o.call(a.opera),l=!!b.attachEvent&&!l,u=r?"object":l?"script":"img",v=l?"script":u,w=Array.isArray||function(a){return"[object Array]"==o.call(a)},x=[],y={},z={timeout:function(a,b){return b.length&&(a.timeout=b[0]),a}},A,B;B=function(a){function b(a){var a=a.split("!"),b=x.length,c=a.pop(),d=a.length,c={url:c,origUrl:c,prefixes:a},e,f,g;for(f=0;f<d;f++)g=a[f].split("="),(e=z[g.shift()])&&(c=e(c,g));for(f=0;f<b;f++)c=x[f](c);return c}function g(a,e,f,g,h){var i=b(a),j=i.autoCallback;i.url.split(".").pop().split("?").shift(),i.bypass||(e&&(e=d(e)?e:e[a]||e[g]||e[a.split("/").pop().split("?")[0]]),i.instead?i.instead(a,e,f,g,h):(y[i.url]?i.noexec=!0:y[i.url]=1,f.load(i.url,i.forceCSS||!i.forceJS&&"css"==i.url.split(".").pop().split("?").shift()?"c":c,i.noexec,i.attrs,i.timeout),(d(e)||d(j))&&f.load(function(){k(),e&&e(i.origUrl,h,g),j&&j(i.origUrl,h,g),y[i.url]=2})))}function h(a,b){function c(a,c){if(a){if(e(a))c||(j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}),g(a,j,b,0,h);else if(Object(a)===a)for(n in m=function(){var b=0,c;for(c in a)a.hasOwnProperty(c)&&b++;return b}(),a)a.hasOwnProperty(n)&&(!c&&!--m&&(d(j)?j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}:j[n]=function(a){return function(){var b=[].slice.call(arguments);a&&a.apply(this,b),l()}}(k[n])),g(a[n],j,b,n,h))}else!c&&l()}var h=!!a.test,i=a.load||a.both,j=a.callback||f,k=j,l=a.complete||f,m,n;c(h?a.yep:a.nope,!!i),i&&c(i)}var i,j,l=this.yepnope.loader;if(e(a))g(a,0,l,0);else if(w(a))for(i=0;i (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0];var j=d.createElement(s);var dl=l!='dataLayer'?'&l='+l:'';j.src='//www.googletagmanager.com/gtm.js?id='+i+dl;j.type='text/javascript';j.async=true;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-P4HH5NV'); Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study View ORCID Profile Alexandra Bache , View ORCID Profile Alastair Sutcliffe , View ORCID Profile Monica E. Lemmon , Carrie Williams , View ORCID Profile Chris Gale , Sarah Land , View ORCID Profile Philippa Rees doi: https://doi.org/10.1101/2025.07.11.25331288 Alexandra Bache 1 Population Policy and Practice, Great Ormond Street UCL Institute of Child Health, University College London , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Alexandra Bache For correspondence: alexandra.bache.23{at}alumni.ucl.ac.uk Alastair Sutcliffe 1 Population Policy and Practice, Great Ormond Street UCL Institute of Child Health, University College London , London, United Kingdom Roles: Professor Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Alastair Sutcliffe Monica E. Lemmon 2 Department of Pediatrics, Duke University School of Medicine , Durham, NC, USA 3 Department of Population Health Sciences, Duke University School of Medicine , Durham, NC, USA Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Monica E. Lemmon Carrie Williams 1 Population Policy and Practice, Great Ormond Street UCL Institute of Child Health, University College London , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site Chris Gale 4 Faculty of Medicine, School of Public Health, Imperial College London and Chelsea and Westminster NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Chris Gale Sarah Land 5 Peeps, Manchester , United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site Philippa Rees 1 Population Policy and Practice, Great Ormond Street UCL Institute of Child Health, University College London , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Philippa Rees Abstract Full Text Info/History Metrics Supplementary material Data/Code Preview PDF ABSTRACT Objective To explore hypoxic ischaemic encephalopathy (HIE) families’ experiences of care in the NHS and the impact of HIE on families. Design Geographically maximum variation sampled semi-structured interviews (n=28) were conducted with parents of infants (born 2010-2024) who underwent therapeutic hypothermia for HIE. Data were analysed with reflexive thematic analysis. Setting Parents were recruited from across the United Kingdom (UK), covering 84% (11/12) of the UK’s regional neonatal networks, known as Operational Delivery Networks. Findings Three themes with eight sub-themes were generated from the interview data. 1) The life-changing diagnosis of HIE: Parents described loss of stability & opportunity to parent, ongoing mental turmoil, and how the diagnosis led to transformation. 2) Balancing hope with facts: Parents unpacked how treasured their child is, the tension between hope and loss they experienced and feelings of being kept in the dark. 3) Struggling to meet their child’s needs: Parents outlined deficiencies in care infrastructure, and battling disability-based discrimination. Conclusions This study highlights the profound and life-changing impact of HIE on families. Parents described cherishing their children and experiencing personal growth. However, many also characterised how challenges were intensified by disability-based discrimination, poor communication and gaps in support across health, education, and social care systems. To prevent further trauma and support family wellbeing, this work identifies priority improvement areas. Embedding trauma-informed care, strengthening transparent and sensitive communication around prognostic uncertainty, and improving care co-ordination will help families feel seen, heard, and supported throughout their journey. What is already known on this topic - Single centre studies demonstrate receiving a HIE diagnosis and having a baby undergo therapeutic hypothermia treatment is traumatic for families. - Little is known about the experiences of families affected by HIE in the NHS, particularly after neonatal discharge. What this study adds - This UK-wide study demonstrates the profound and life changing impact of HIE on families. - Parents cherish their children and may experience personal growth after HIE; however, family well-being can be undermined by disability-based discrimination, poor communication and inadequately resourced health, education and social care. How this study might affect research, practice or policy - These findings support embedding trauma-informed care, encouraging transparent yet sensitive communication around diagnosis and prognosis, and improving care co-ordination to help families. INTRODUCTION Hypoxic ischaemic encephalopathy (HIE) is the leading cause of brain injury amongst term infants, with moderate-severe HIE affecting 1.6-1.9 per 1000 live births annually in England 1 . Since 2010, the National Institute for Health and Care Excellence guidelines have recommended therapeutic hypothermia for moderate-severe HIE as it prevents one case of death or disability for every seven babies treated 2 . The care pathway for infants with HIE is traumatic for parents. Due to the emergency nature of hypoxia, parents suddenly face uncertainty about their child’s life-expectancy and neurological outcome 3 4 . As care is organised into regional neonatal Operational Delivery Networks (ODNs), babies born outside tertiary centres will require rapid transfer to a different hospital to initiate therapeutic hypothermia. Most families are unfamiliar with HIE and the umbrella term neonatal encephalopathy 5 . Families may encounter further emotional, psychological and financial demands raising children with disabilities and specialised care needs 6 . Existing studies in the US and Sweden have largely focused on parental experiences of therapeutic hypothermia 4 7 – 9 and prognostic communication 10 11 . These highlight the range of emotions parents experience 3 7 including chaos and uncertainty 11 12 , a loss of normalcy 13 and also ongoing parent psychological effects 14 . However, little is known about how families experience HIE care during and after their baby’s time in the neonatal unit, or how this diagnosis affects their lives moving forward 14 15 . Methods We conducted a qualitative study to explore how having a child with HIE impacts families and families’ experiences of care in the NHS. Theoretical framework To explore lived experiences, we chose an experiential orientation for this qualitative thematic analysis 16 . A critical realist approach underpinned this, which conceptualises that whilst there is a singular independent reality, people perceive this differently 16 17 , influenced by sociological and cultural contexts 16 17 , including the NHS in the UK. We chose the ecological life course approach 18 as the theoretical framework guiding data collection and analysis to acknowledge environmental and interpersonal impacts. Recruitment & sampling Parents aged 18 or above, who had a UK born child treated for HIE with therapeutic hypothermia as a newborn were eligible. Participants were recruited through a self-selected response to online adverts (Supplement 1) that were shared by Peeps, Hope for HIE, the HIE network, and the CHERUB study. Prospective participants provided data in an expression of interest form (Supplement 2), which formed a sampling frame. Purposive maximum variation sampling was used to maximise diversity amongst participants 19 , across regional ODN, infant and parental characteristics. PPI A workshop held with HIE families as part of the CHERuB study 20 highlighted the need for this study. It identified families varied experiences including vague HIE communication and insufficient signposting of support. Data collection & handling Interviews were conducted individually online by one of the authors (AB) through Microsoft Teams, following a semi-structured interview guide (Supplement 3) which covered HIE’s impact, neonatal communication and support. Virtual interviews were chosen to help parents to participate alongside caring commitments and to maximise geographic spread 21 . We developed the interview guide with neonatal doctors, families, and HIE charity representatives and piloted it with a qualitative researcher. An iterative approach was used to adjust the guide for clarity and explore emerging areas of interest 22 , including from a parallel survey of families. Interviews were audio-video recorded and automatically transcribed by Microsoft Teams. Each transcript was checked against the recording for accuracy. Concurrent field notes, reflexive audio and typed notes were documented. Interviews were held between 24 th April and 20 th June 2024, at the participant’s convenience including evenings and weekends. Verbatim transcripts and recordings were copied to UCL’s data safe haven, then pseudo-anonymised, with names, places and job roles de-identified with bracketed text. Data analysis AB analysed transcripts using reflexive thematic analysis 16 23 . This included labelling units of meaning or analytic ideas (“coding”). Due to the experiential focus, coding was primarily inductive, data-driven, and semantic, focusing on explicit meaning 16 . NVivo software was used to organise the data, codes and reflexive memos. Themes were produced by grouping codes to form patterns of shared meaning with a central organising concept 16 , with names and definitions updated progressively. To minimise distress, study finding member checking was not utilised 16 22 . Reflexivity Interviews were conducted by AB, a female research and medical student, characteristics disclosed to participants alongside the research aims. AB had post-graduate qualitative training and no prior relationship with participants. Ethical review, consent & safeguarding Chosen participants were sent study information (Supplement 4) and required to provide signed e-consent (Supplement 5) by the REDCap survey platform to participate. They received a £20 voucher afterwards. During recruitment and interviews, participants were signposted to a support sheet (Supplement 6) reviewed by a Child Bereavement Specialist and a distress protocol (Supplement 7) was followed. UCL Ethics Committee approved the study (project ID: 26861/001). RESULTS Participants The interview expression of interest form was completed by 63 participants including one duplication. Thirty participants were interviewed, with two suspected imposter participants excluded. A PID number replaces participants’ names. Table 1 demonstrates the 28 interview participants’ characteristics, whose children were born between 2010 and 2024. Most participants primarily identified as a mother (n=27, 96.4%), had multiple children (n=18, 64.2%), and with developmental delays following HIE (n=21, 75%). Recorded interviews, excluding the introduction and debrief, lasted on average 59.5 minutes (range 46 -81 minutes). Rather than data saturation, we chose a target sample size of 20-30 interviews 24 . View this table: View inline View popup Table 1. Interview participant characteristics, N=28. Note: ethnicity categories have been collapsed to the harmonised high level category standards for reporting. Themes Eight sub-themes were produced and were grouped under the themes 1) Life changing diagnosis of HIE ( Table 2 ) 2) Balancing hope with facts ( Table 3 ) and 3) Struggling to meet child’s needs ( Table 4 ). View this table: View inline View popup Table 2 Theme 1 - Life changing diagnosis of HIE View this table: View inline View popup Table 3 Theme 2 - Balancing Hope with Facts View this table: View inline View popup Table 4 Theme 3 - Struggling to meet child’s needs Life-changing diagnosis of HIE ( Table 2 ) Loss of stability & opportunity to parent Loss of stability describes the far-reaching consequences of the HIE event, in parents’ plans and relationships. One parent likened this to ‘ an emergency landing’ (PID01). For some, friends and family gave stability, whilst others found friendships dissolved and the relationship with their partner broke down. Initial losses of opportunity to parent included delayed milestones of first meeting, feeding and holding their baby. Parents felt under scrutiny in the unfamiliar neonatal unit ‘ like NASA’ (PID02), and were admonished, for example when opening the incubator too long: ‘It’s humiliating the way they do it, like you’re a naughty school child’ ( PID03 ), contributing to the loss of control. One parent highlighted the Lucy Letby media coverage’s 25 impact: ‘ we would not leave […] you can’t just leave a child in the care of people you don’t trust’ (PID04). Ongoing mental turmoil The traumatic nature of the initial HIE event took a protracted mental toll on parents. Future uncertainty continued into their child’s adolescence. “You’ve gone through a very big traumatic experience to ‘Ok you can go home, now’ and you go home and you’re just waiting’ (PID05). Parents felt ‘on hold’ (PID06), ‘almost like a grenade’s been thrown’ (PID07) as they awaited the development of possible neurological symptoms. Comments their child ‘ look[ed] perfectly fine’ were difficult for some parents to hear. Parents felt this was ‘belittling what [they] went through […] but also it’s like saying that if [they] did have cerebral palsy […] there would be something wrong with [their child]’ (PID08). Some parents extensively researched HIE but found this fuelled worry. Many parents were diagnosed with post-traumatic stress disorder (PTSD) and anxiety, experiencing guilt and hypervigilance. Some experienced nightmares, a ‘recurring dream of this feeling of being on a table being cut but not being able to tell anyone’ (PID09). Parents felt earlier support might have helped, reflecting ‘perhaps, you know, five years on […] I wouldn’t hold so much guilt and sadness about it’ (PID08). Parental transformation Some felt the HIE event triggered positive personal change. One parent described becoming ‘an entirely different person’ , having been ‘ broke apart’ by the HIE event, she says I ‘slowly put myself back together. And it’s just different now, but when I sit and think about it, I prefer this version’ (PID10). Another developed a more ‘ holistic approach’ at work (PID11). Some parents needed to redefine their identity. ‘I had a career before. [..] I’m a carer […] My life is now her’ (PID12 ). Some mothers felt the injustice of being expected to sacrifice their career. However, others saw the benefits in being ‘much more available […] so I’ve been able to enjoy being a mum’ (PID09), with priorities shifted from their child’s external success to happiness. Parents developed emotional coping skills with a ‘more healthy way of viewing mental struggles’ (PID13). Balancing hope with facts ( Table 3 ) Treasured child Parents described their love of spending time with their child, of whom they were proud and accepting. ‘He is exactly the person he needs to be’ (PID08). Within this they acknowledged the difficulty of their situation . ‘It is quite demanding, having a complex needs child, and I won’t change him for the world like I love my son. He is who he is. He’s a cheeky little boy’ (PID22 ) . Parents appreciated NICU staff who helped them interact, through bathing or stroking their baby. As advocates, parents emphasised their child being ‘worth fighting for’ (PID15). Tension between hope and loss During the neonatal unit admission, parents felt being given hope was essential amongst the ‘ cold hard’ clinical facts but acknowledged the difficulties doctors’ face in offering hope amidst uncertainty. “After 24 hours […] we started planning his funeral. Because we were given absolutely zero hope” (PID16). Many parents were grieving, regardless of their child’s outcome, as one parent says, ‘I mourned for the life that I thought I might lose’ (PID07). Their child’s birthday was ‘an anniversary of something really traumatic’ (PID12). In some incidents professionals negatively challenged parents’ emotions. This sometimes invoked memories that their concerns were not acted on during birth when they were reassured ‘“You’re fine you know”. But it all went wrong’ (PID05). One crying parent was told ‘ you need to be strong one for your wife’ (PID). Being kept in the dark S ome parents felt information about their child was withheld and only emerged through clinical investigations. This lack of transparency damaged trust in the NHS. ‘They didn’t tell us he had HIE. […] emotionally they kept me in the dark a lot and it’s affected my trust of any healthcare professional’ ( PID17 ). Additionally, parents found HIE information ‘ quite vague’ (PID01), sometimes only learning this diagnosis through discharge paperwork. Parents then found HIE was unfamiliar to health visitors, midwives, general practitioners and emergency doctors: ‘ I had one doctor that knew what HIE was! ’ (PID10). Further a few parents found placental analysis results were not readily shared, which extended feelings of guilt they associated with the birth injury and removed choice in deciding whether to have more children. Struggling to meet child’s needs ( Table 4 ) Insufficient care infrastructure Many children had additional health, educational and social needs. However, the lack of supportive infrastructure frustrated parents, forcing them into a costly, time-consuming litigation process. One parent asked PALS [patient advice liaison service] ‘what does it take […] to get a piece of supportive equipment that’s desperately needed? That’s for safety’ (PID14). Parents were providing full time care, including holding their child for ‘literally 20 hours a day [..] because that was the only way she would tolerate feed and not choke’ (PID04) but received no further support. Several parents described the stress of making emergency stops whilst travelling to appointments with their child at risk of choking, due to lack of appropriate seating. Necessary equipment included specialist beds, chairs, buggies, bath seats, and leg splints but parents felt forced to ‘ fight tooth and nail’ (PID16) to access these. Battling disability-based discrimination Parents felt they encountered discrimination against their child in educational and healthcare settings, which failed to make accessibility adaptations. ‘I don’t think they want her in [nursery] […] she needs a standing frame […]. They’ve got plenty of room for it and they’re refusing’ ( PID14). Several children had left school due to a lack of support. Experiences of disability-based discrimination combined with others forms of discrimination like racism: ‘ It’s not just I have to deal with institutional racism, the unconscious bias […] there’s so many layers’ explaining ‘when you’re in pain, it’s not being taken seriously […] when your child needs care oh you’re being aggressive’(PID03) . Prognostic information was sometimes felt to be negative and framed by a negative view of disability, ‘ we were very much told all the things he may not do. And very few people told us all the things that he would do ’ (PID08). Parents were hurt by the sense their child was written off by the NHS, with financial savings prioritised over their child’s care. ‘ The NHS don’t have time for children like [child’s name] at all, so he’s completely excluded from society’ (PID02). For some families, insufficient care infrastructure was perceived as systemic discrimination against their child with a disability. DISCUSSION Our study findings demonstrate the profound and life-changing impact of HIE on families. Parents cherish their children and may experience personal growth. However, parents found disability-based discrimination, guarded and insensitive communication and inadequately resourced health, education and social resources made accessing essential care challenging. Strengths & Limitations A major strength is this study’s geographic representation across the UK, with participants from 84% (11/12) of regional neonatal networks. Independence of researchers from the clinical team may have reduced the power asymmetry 26 enabling disclosure of negative or discriminatory experiences. Although the primary researcher’s lack of lived parenthood experience could mean nuance was missed 27 , it may have facilitated parents’ openness, as parents often positioned their experiences relative to other parents’. Perceiving the researcher as an ‘outsider’, may have increased parents’ confidence in their own experience 27 . Furthermore, this study’s larger sample size 15 13 provides strength, through highlighting shared and divergent experiences across families in different circumstances, enabled by purposive maximum variation sampling 19 . A study limitation is the recruitment’s reliance on support groups. While successfully reaching many parents, it may have introduced selection bias. Notably, fathers and bereaved parents were underrepresented despite targeted recruitment. Additionally, White British (n = 24, 85.7%) and university educated (n = 23, 82.1%) participants were overrepresented. While recall bias may be considered a limitation, parents’ subjective perception and memory of events is critically important, as it constitutes their lived experience which influences support needs. Furthermore, the £20 voucher provided may have introduced motivation bias, resulting in the attempted participation of imposter respondents who were excluded. Context with literature The theme of “loss of stability” reported in this study intersects with the concept of chaos previously described 3 . Additionally, previously highlighted "repeated losses" or "longitudinal grief" 12 themes, highlight grief around HIE as an ongoing process. Further loss of opportunity to parent has been previously identified 28 . The theme “being kept in the dark” aligns with existing data suggesting families experience unclear neurologic prognostication 29 and fragmented communication 10 . Mistrust may develop when nonspecialist caregivers provide initial neonatal information 10 . Amongst the theoretical discussions around HIE and neonatal encephalopathy terminology 5 , this study emphasises the real-life need to explain diagnoses to families in a timely manner to maintain their trust and enable them to access support 5 . This study adds that withholding placental analysis results, can augment harm by limiting parents’ opportunities to make informed reproductive choices. Furthermore, while aspects of the "ongoing mental turmoil" theme—like the burden of uncertainty—have been reported elsewhere 10 13 , this study uniquely emphasises that negatively framing disability contributes to healthcare and education exclusion alongside affecting families directly. VanPuymbrouck, Friedman, and Feldner 30 note many healthcare professionals harbour implicit biases against individuals with disabilities 30 , often stemming from a lack of knowledge and a tendency to dehumanise them 31 . This shows the far-reaching impact of negative narratives on families affected by HIE. The “parental transformation” theme builds on a previously identified theme of positive adaptation 15 , but further adds that parents’ priorities may be altered and identity reformed. This aligns with the findings from a systematic review of the positive aspects of parenting a child with intellectual difficulties 6 which also identifies the child as a source of happiness and fulfilment, overlapping with the “treasured child” theme. Research implications Future research should explore the experiences of underrepresented HIE populations. This includes people from minority ethnic groups, bereaved families as well as fathers, siblings and grandparents. To better counsel families, methods and training to communicate uncertainty and neurological outcomes, including the role of prognostic indicators, warrant further investigation. Policy & practice implications The importance of perinatal brain injuries, like HIE, is recognised in current UK policy, including the Department of Health and Social Care’s national maternity ambition 32 . The consequences of these injuries on children, families, and society highlight the urgent need to improve care pathways. Therefore, eight core HIE care principles grounded in parent experience are proposed. These include: (1) provide stability, (2) deliver trauma-informed care, (3) ensure transparent timely communication of HIE diagnosis, (4) provide training on language used to communicate about disability, (5) simplify access to care, (6) offer psychological support, and (7) resource parents through change. Overarching (8) is the goal of demonstrating care for the child and empowering families to love, bond with, and cherish their child (see Table 5 ). View this table: View inline View popup Download powerpoint Table 5 Policy and practice recommendations Stability and safety are key components of trauma treatment models 33 . These can be increased by enabling parents to stay near their child 34 or offering live video connection 35 . Secondly, healthcare settings may re-traumatise parents through removing choice, minimising their experiences, or emotional insensitivity 36 37 . Therefore, all healthcare professionals may benefit from trauma-informed care training. Recent press coverage of maternal and neonatal care failings may further undermine trust 25 , emphasising the importance of open communication. A discharge meeting should always be offered, with prompt obstetric debrief to discuss the birth and future pregnancy implications. Given peer support facilitates parental role attainment, 38 and parental empowerment is a feature of family integrated care 39 , units should signpost to sources like HIE charities. Improving neonatal and community care transition and increasing inter-specialty learning will benefit families and professionals. In conclusion, this study highlights priority areas for improving support for families affected by HIE. These findings support embedding trauma-informed care, encouraging transparent and sensitive communication and improving care co-ordination to create a more healing environment. Data Availability The study data including audio-visual recordings will not be publicly available due to containing sensitive and identifiable data. Metadata will be made available. COMPETING INTERESTS CG has received salary support from the Medical Research Council and grant funding paid to his institution from the National Institute for Health Research (NIHR), Action Medical Research, the Canadian Institute for Health Research, the Medical Research Council, and Chiesi Pharmaceuticals. CG has also received payment of travel and accommodation to attend educational meetings from Chiesi Pharmaceuticals. SL is the Co-Founder and Charity Manager at Peeps, a charity supporting those affected by HIE. FUNDING A £600 stipend to cover thirty £20 vouchers was provided by the UCL MRes course. This study is an extension of the CHERuB study, which is funded by the National Institute for Health and Care Research (NIHR301457) and the NIHR GOSH BRC. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. ACKNOWLEDGEMENTS Thank you to Peeps, Hope for HIE and the HIE network for their help with recruitment and feedback. Thank you to Dr Celine Lewis for her valuable input throughout the study. Thank you to Rachel Cooke, Great Ormond Street Hospital Bereavement Service Manager, for her help reviewing family resources and providing psychological debrief. 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