The feasibility of implementing the General Movement Assessment tool in the Neonatal Intensive Care Unit of a Tertiary Hospital in Malawi: A qualitative study of caregivers and healthcare workers’ experiences. | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (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],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The feasibility of implementing the General Movement Assessment tool in the Neonatal Intensive Care Unit of a Tertiary Hospital in Malawi: A qualitative study of caregivers and healthcare workers’ experiences. Anderson Mughogho, Macpherson Mallewa, Kondwani Kawaza, Alicia Spittle, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8536627/v1 This work is licensed under a CC BY 4.0 License Status: Under Revision Version 1 posted 17 You are reading this latest preprint version Abstract Background: Early identification of infants at risk of neurodevelopmental disability is increasingly becoming possible, through the use of novel early identification tools. In this study, we sought to explore the views of healthcare workers and caregivers on their experiences in the Neonatal Intensive Care Unit around the time of early diagnosis using the General Movement Assessment to understand the best ways to implement the tool. Methods. We conveniently sampled 15 caregivers with infants at high risk of CP as well as ten health care workers from a tertiary hospital in Blantyre, Malawi. We conducted in-depth interviews using a translated and piloted topic guide in Chichewa (caregivers) and English (health workers), audio-recorded and transcribed verbatim. Transcripts were then inductively coded and placed within themes aimed at understanding barriers and facilitators to implementation. Results . Major themes identified from caregiver interviews included: spirituality as a source of strength and acceptance, the power of social support, fragile trust in healthcare workers' provider systems, economic strain during admission, gaps and strengths in health education and communication, and limited awareness of CP and its causes. Healthcare workers' themes included: limited awareness of early identification tools for CP, uncertainty and hierarchy in providing CP diagnosis, informal and inconsistent referral process, low familiarity and mixed perception about the GMA and teamwork as a coping mechanism amid resource constraints. Conclusion. Implementing GMA in Malawi requires a trusting environment between caregivers and healthcare workers, a better understanding of the importance of early identification tools and strengthening capacity within neonatal units. Furthermore, parents need to receive clear, accessible information to support their willingness to participate and improve their experience with early CP screening. Cerebral palsy Early identification Early intervention General movement assessment Malawi What this paper adds Implementing GMA in a NICU setting in Malawi should involve supporting good working relationships between caregivers and healthcare workers Healthcare workers in the NICU need to have basic training regarding screening and early identification of high-risk infants. Caregivers and healthcare workers' lived experience can be a barrier or facilitator for implementing early screening tools in the NICU. INTRODUCTION Cerebral palsy (CP) is a common childhood neurodevelopmental disability affecting millions of children worldwide.( 1 – 3 ) Prevalence is reported to be the highest in low—and middle-income countries due to challenges to access healthcare, poor prenatal and perinatal care, and a higher incidence of birth asphyxia.( 4 ) Pooled prevalence ratios in sub-Saharan Africa are estimated to be between 2.7 and 3.9%.( 5 ) These higher prevalences are usually associated with the more severe forms of CP, which often can further increase the burden of having a CP child in the family.( 4 , 6 ) A recent epidemiological study from Malawi has reported a prevalence of 1.7 per 1000 births, which is lower than the prevalence reported across Africa. However, the findings of this study reflect an identification bias of the Key Informants' use, as they identified more severe cases than milder ones of grade I and II on Gross Motor Function Classification (GMFC). Most cases reported scored level IV and V on GMFC, which affects the generalizability to the broader CP population.( 7 ) Early identification of infants with CP, or at risk of CP, is increasingly becoming an area of interest for researchers, due to evidence that clinical diagnosis is possible as early as a few weeks to six months corrected gestational age. This is achieved through the use of novel early identification tools, such as the General Movement Assessment (GMA) and the Hammersmith Infant Neurological Examination (HINE), in conjunction with the use of earlier Magnetic Resonance Imaging (MRI). These are now widely used in the neonatal intensive care units (NICU) and follow-up clinics in high-income countries( 8 ), particularly as new evidence emerges on the highly predictive value of these tools for detecting infants at risk.( 9 ) Furthermore, another tool, the Standardized Infant NeuroDvelopmental Assessment (SINDA),( 10 ) has demonstrated similar predictive validity to the GMA and HINE at a corrected age of three months. Currently, in many low-resource settings, especially in Africa, early identification and formal diagnosis of infants at risk for CP remain challenging. Contributing factors include limited access to MRI, a shortage of specialists in pediatric neurology and neuro disability, and barriers such as late presentation, lack of follow-up, financial constraints, and the stigma surrounding disability. ( 11 ) The GMA, HINE, and SINDA appear to be better suited for these low-resource settings than other tools, due to their high predictive power and applicability from birth, whereas neuroimaging is prohibitively expensive. The HINE, although effective like the GMA, has a recommendation for use of 2 to 24 months, similar to the SINDA, which demonstrates excellent accuracy at a corrected age of three months. However, this is often too late in our context, as many infants would have been discharged and are difficult to track. The GMA assesses infants' spontaneous movements from birth to about five months post-term. GMA is non-intrusive, non-invasive, and cost-effective, making it a tool that could be implemented in resource-limited settings in the early months after birth. ( 12 , 13 ). It has also been demonstrated to be more specific and sensitive than HINE. ( 14 ) Implementing early identification tools, however, requires feasibility studies tailored to the specific context. Studies in the USA and Australia have investigated the feasibility of implementing the GMA, reporting that it was possible within their existing follow-up programs, which are run through clinics.( 15 , 16 ) Researchers demonstrated that implementing GMA using new processes improved the number of infants examined by the GMA. More importantly, the changing implementation practice raised health providers’ awareness of the need for early intervention in at-risk infants, leading to earlier diagnoses. The international guidelines on early detection of CP recommend that in most low-resource settings (including Malawi), the GMA and HINE can be used, however, there is limited knowledge on how these tools should be implemented in these settings.( 17 ) The GMAs' demonstrated ability to use during the writhing period makes it the preferred tool for implementation in the NICU. It requires minimal handling of medically fragile infants. ( 18 )In contrast, the SINDA demonstrates accuracy at three months and the HINE at two months, making them suitable for post discharge outpatient assessment rather than in the NICU. ( 10 , 19 )Consequently, the GMA could be a more appropriate tool for early detection in the NICU, while the SINDA and HINE would be better suited for follow-up clinics.( 10 , 19 ) In this study, we sought to explore caregivers' lived experiences in the NICU and the use of the GMA tool. We also explored healthcare workers' (HCWs) perceptions of early identification tools and their confidence in diagnosing and referring at-risk infants. The overall aim of the study was to determine the feasibility of implementing the GMA tool in the referral (tertiary) NICU of a resource-limited setting in Africa. Understanding the perceptions of caregivers and HCWs will provide us with invaluable information to determine the feasibility of use and future needs for implementation. METHOD Design This study used in-depth interviews to explore caregivers’ and healthcare workers’ perspectives on their experiences in the NICU. We used a phenomenological approach, believing that the verbatim of those interviewed validly reflects the views and perceptions of those we study.( 20 ) These methods enable the gathering of rich data from participants who can express themselves freely, providing detailed information for understanding the present situation.( 21 ) Research setting The study was conducted in a 40-bed capacity neonatal unit of a tertiary hospital in Blantyre, Malawi. In addition to admissions from within the hospital, there are referrals from surrounding health centres, private hospitals, and districts. The NICU is staffed by nurses (registered and technicians) and clinicians (medical officers, registrars, interns, and consultants). Recruitment and selection We trained a study nurse to conveniently sample caregivers of infants at high risk of CP who had undergone a GM assessment and were about to be discharged from the NICU. Internal hospital communications provided staff members with information about the study. The lead author (AM) then approached clinicians on duty in the NICU, who offered to take part. Interviews In-depth interviews were conducted with both caregivers and HCWs, facilitated by guides. After piloting, we adjusted the topic guide. The caregiver interview guide was translated into Chichewa, while HCW interviews were in English. Informed consent was obtained before the interview. Caregiver interviews lasted 15–60 minutes, and HCW interviews lasted 25–90 minutes and were conducted in a quiet room near the NICU. A well-trained and experienced female researcher (JMN) with a master’s degree in education was hired to conduct all the interviews. She underwent an orientation of all the research materials done by AM. AM and ALNM participated in some of the pilot interviews. JM was not known to all participants before the interviews. Ethical approval was gained from Kamuzu University of Health Sciences, number P.01/23/3955. Analysis An experienced transcriber transcribed all interviews verbatim. Transcripts were reviewed and compared with audio files to ascertain quality. Translation into English of the Chichewa transcripts was then conducted. Transcripts were uploaded into Dedoose software, version 9.054 (SocioCultural Research Consultants, Manhattan Beach, CA, USA). AM created codes deductively from the study objectives and inductively from the data available. After an iterative process, a list of codes was shared with MG and ALNM, who contributed to ensuring a consistent coding structure before the final coding framework. This was discussed further with the team to create a thematic map showing the experience of caregivers and HCWs in the NICU. Data saturation was achieved after this iterative process and determining a final sample size. Data triangulation of the themes from caregivers and HCWs was done at the point of discussion, where themes that may be considered barriers and facilitators to implementing the GMA in the NICU were identified. RESULTS All 15 caregivers were female and were biological mothers of the neonates admitted to the NICU. Their ages ranged between 18 and 45. The HCWs comprised six clinicians (three medical officers, two registrars, and one medical intern) and four staff nurses (two nurse technicians and two registered nurses). The majority of HCWs were female, except for two males (a nurse and a medical officer). CAREGIVERS' EXPERIENCE AND JOURNEY IN THE NICU We identified four key themes that characterized caregivers’ experiences in the NICU, offering crucial insights into what could affect the feasibility of implementation of the GMA in a tertiary neonatal unit in Malawi. The themes are outlined in the preceding sections: 1. Support for caregivers: Support for caregivers is vital – whether this is through their spirituality, staff, peers, and/or family. Spirituality as a Source of Strength and Acceptance Caregivers described how they turned to faith and spiritual beliefs to find hope and resilience during their child’s NICU stay. Their belief that outcomes were in God's hands helped them accept the situation, offering emotional support in a time of uncertainty. “ Staying here is a challenging experience. However, I have nothing to worry about; I know everything will be fine with my baby…I have accepted the situation about my baby since it's God's will for this to happen.”. (CG9, CG15) The Power of Social Support: Staff, Peers, and Family Emotional and practical support from nurses, fellow caregivers, and family members was described as playing an important role in caregivers’ experiences. Positive relationships with staff build a sense of safety, while peer networks provide encouragement and enable a shared solidarity. “The relationship is good; they (nurses) are helping my child every time he needs attention; they go and check on him, they treat us well, and without them, our babies cannot get better….my mum is here with me and doing everything for me………I have made friends here, we share things, they also encourage and give me advice.” (CG13) (CG8) (CG4) 2. Health System Factors How health care workers interact and communicate with parents may enable early identification tools, such as the GMA, to be feasible for use. Fragile Trust in Healthcare Providers and Systems Some caregivers described how challenging it was when healthcare staff failed to keep them informed about their infant's condition or the procedures being performed. They explained how they had entrusted the safekeeping and care of their child to medical staff. Still, the lack of communication left them feeling overlooked and disrespected, leading to fear and loss of confidence in the staff. “ Sometimes, we are not told what they are doing with our baby; you need to know. The doctors and nurses should also tell us the good and bad things. As a mother, you get disappointed when nurses do something to your babies without telling you…., you observe and ask yourself, why are they not telling me? What is wrong with my baby?” (CG9) Some caregivers were not happy with their babies being videotaped. They did not trust the HCWs' intention of taking videos. They believed their infant's videos could be used for sourcing funds from donors or shared on social media like WhatsApp or TikTok. Aah, at first, I was not satisfied because I was wondering about the video that they would take and what they would use it for. The baby is too young, and will they not be posting anything on social media like WhatsApp? I was worried. But after explaining my worries to them, it was then that I understood the reason why they were to take the video. (CG1) 3. Gaps and Strengths in Health Education and Communication Caregivers reported that healthcare workers usually provided information regarding infection prevention in the NICU, as well as explaining what signs of infection or severe illness to look out for when at home. Caregivers reported that they were also provided with general information regarding routines to follow regarding baby feeding times. None of the caregivers mentioned being provided with information about signs of neurodisability or developmental difficulties, and how to seek help for this if they were concerned or worried. “They always advise us on how to care for our babies, changing diapers and keeping them clean….in the Kangaroo, they advise us on how to keep the baby warm all the time. They tell us how to feed the babies; some use tubes because they cannot suck the breast.” (CG7) Limited awareness of Cerebral Palsy and its causes: Very few of the caregivers relayed knowledge or understanding as to the causes of cerebral palsy. One caregiver described an issue with high blood pressure, but few of the others provided any reasoning or understanding as to why their child might have a developmental difficulty. “I am the one with the problem; my problem was high blood pressure during pregnancy, and labour just started before the due date had arrived. There are many causes, though.” (CG3) 4. Economic Strain During NICU Admission Financial hardships were a consistent burden, as caregivers struggled to afford basic necessities. Hospital-provided resources were limited, especially for those without nearby family support, exacerbating stress during hospitalization. “We lack food here. It is only provided to one person. It is sad to see your guardian not getting food, ending up sharing the same little food meant for one person… (CG10) There is always a food shortage, especially when you don’t have relatives to bring you extra food from home’’ (CG14). HEALTHCARE WORKERS' EXPERIENCE IN THE NICU We identified six themes that characterized HCWs' experience of early identification of cerebral palsy in the NICU. 1. Limited awareness of early identification tools and the provision of a diagnosis of CP Most HCWs were unaware of the tools recommended globally for identifying infants at risk of developing CP. The use of the Apgar score, clinical experience, and clinical examination was reported as the main ways of identifying infants at risk of CP. One medical officer described: ‘’The babies who are at risk of CP are associated with birth asphyxia…. We also look at posturing, as for a normal baby, their posture needs to be froggy and if the posture is extended, it is considered an abnormal posture…I think it depends on the level of knowledge and experience. For example, my colleague who is the Registrar does not have problems with identifying CP’’. (HCW1) Low Familiarity and Mixed Perceptions of the GMA Tool Most participants did not voice any knowledge regarding early identification tools such as HINE and GMA. While they considered GMA a good tool, when it was described to them, they also expressed worry about adding more work to their already busy schedule by using a specific tool to identify infants at risk of CP. “I do not use or know any tool. My impression is that GMA can be a good tool. My only worry is that you may be adding more work, but if you can do more to help somebody based on that extra work, then you will rather do it because there is no point spending the whole day, but then you are missing out some children who are at risk of developing CP. I will be happy to have such a tool.” (HCW4). 2. Informal and inconsistent referral processes HCWs described the process for referral of those children whom they felt might have CP in the NICU. They described how infants identified in the NICU at risk of developing CP were sometimes referred to the general clinic or physiotherapy department for further management, but with no set processes or criteria. “There is no set procedure for the identification of children at risk of CP. For babies with asphyxia, we examine and see that the baby is having signs like being floppy or having reduced reflexes, then we know that the baby has Hypoxic Ischemic Encephalopathy. On discharge, we advise that they book a general medical clinic, and we also tell them to book physiotherapy”. (HCW5) 3. Teamwork as a coping mechanism amid resource constraints Teamwork and collaboration among HCWs were reported to be very valuable in coping with the stress of understaffing, the challenging working environment, and high patient loads in the NICU. They reported a good working relationship between doctors and nurses. “ My relationship with my fellow doctors is good because we all know that we must finish the ward round. I feel like the relationship amongst members of staff here is good because if you do not know something as an intern, you and the seniors will help .” (HCW5) 4. Stereotypical perceptions (Caregiver misunderstandings and provider bias) An obvious tension was identified with HCWs describing how they perceived caregivers as troublesome, ignorant, and challenging. “ I feel like mothers are very difficult people to deal with, and have stories we don’t know, like how long it took for them to have that baby. Maybe they stayed a very long time, maybe that is the only child, or they wanted a boy child, and finally they have one.” (HCW4) 5. Staff numbers and roles (capacity within the NICU) HCWs highlighted systemic issues with staff ratios, burnout, and the need to engage more HCWs in the NICU. They reported how having very few nurses and doctors managing high caseloads of infants admitted to the NICU might affect the quality of services delivered. HCWs narrated on who was responsible for providing a CP diagnosis. “Most of the time, we are supposed to be seven nurses during the day. But currently, we are 3 or 4 nurses. We were supposed to have five nurses during the night, but mostly, there are two or three. The numbers vary depending on the availability of staff .” (HCW10) 6. Uncertainty and hierarchy in providing diagnoses of cerebral palsy Participants expressed their views on who should provide the diagnosis and their confidence in doing so. While some HCWs reported having confidence in identifying Infants at risk, diagnosis was reserved for seniors who conduct a clinic where diagnosis is provided. Infants identified in the NICU are usually referred to an outpatient clinic managed by a consultant pediatrician. “My job ends at booking them clinics. So, I am not part of whatever happens at the clinic; that is why I do not have practical experience of what happens. Those who make diagnoses are the ones who attend clinics; usually those doing masters and PhD; the Registrars also are the ones who do the diagnosis and clinics.” (HCW6) DISCUSSION This study has provided us with a deeper perspective on what it would take to implement the GMA tool in NICUs in Malawi . Through this study, we have aimed to explore caregivers’ journey and experiences in the NICU and their perceptions of the GM assessment. Our study is one of the very few that has delved deeply into exploring caregivers' and HCWs' experiences in the NICU to determine barriers and facilitators to implementing GMA . A similar study done in South Africa reported on the feasibility of the GMA, through examining the sensitivity and specificity of the tool rather than any more in-depth analysis of the actual barriers and facilitators in implementing the tool within their context.( 22 ) Another study that examined other aspects besides the tool's sensitivity and specificity was a study done in New Zealand.( 23 ) In this study, feasibility was assessed through determining the sensitivity and specificity of the GMA alongside an assessment of the fidelity of documentation, the quality of discussions with the clinical team, as well as communication with families. They demonstrated that establishing good collaboration among stakeholders was vital, while a lack of resources was the only perceived barrier to implementation.( 23 ) While all these aspects of feasibility are significant, it is also important to concentrate on the experiences of caregivers and HCWs to truly understand the issues with the implementation of a novel tool for early identification. The key findings of our study identify several factors that need to be considered when implementing an early identification tool, such as the GMA. We have demonstrated that caregivers who are admitted to the NICU have a journey characterized by the hope of a better outcome for the baby, which is affected by either positive or negative support from their spirituality, as well as family and community support. Our study also highlights the importance of communication between HCWs and caregivers, the caregiver’s knowledge of health issues affecting their infant, and finally, the capacity, knowledge, confidence, and competence of staff. Admission to the NICU takes away the joy and exposes caregivers to stress, anxiety, and fear. To cope with such, caregivers resort to spirituality, relying on faith and hoping that their infant will be healed through their belief in God. Most caregivers interviewed described spirituality as a key source of strength, trusting that God would ensure a positive outcome. None of the caregivers blamed God or viewed their baby’s admission as divine punishment or abandonment. This optimistic outlook likely reflects Malawians’ deeply religious culture and strong family ties, both linked to positive coping strategies.( 24 ) Spiritual care might be considered an ingredient of holistic support for caregivers in the NICU, boosting caregivers’ confidence and encouraging them to seek support from HCWs.( 24 ) Literature on how spirituality can affect the acceptability of early diagnoses is scanty, however, in our study, caregivers with positive coping skills described how they were more likely to accept interventions they perceived as helpful to the infant's development. Although all caregivers interviewed demonstrated positive coping skills, most caregivers were of primary education, lacking knowledge of the risks associated with their baby being admitted to the NICU. Caregivers emphasized the benefits of support from both family and hospital staff when they were first admitted to the NICU. Some reported feeling cared for and described positive relationships with the nurses, who they believed were dedicated to their babies’ recovery. Good communication between healthcare workers and caregivers played a key role in building trust, consistent with findings that strong HCW-family interaction reduces uncertainty and improves the NICU experience.( 25 ) Support from family also motivates caregivers to stay emotionally strong. However, some noted limited support due to families living far away and facing financial barriers to visiting or making phone calls. Psychosocial support is crucial for individuals facing stressful events, helping to mitigate the risk of mental health issues.( 26 , 27 ) While formal peer support systems are not in place, caregivers naturally support one another, and in Malawi, the cultural practice of umunthu , a communal way of caring that is embedded in daily life, can make a big difference to caregivers.( 27 ) Informal peer support is reported to be a key coping strategy employed by nurses in the NICUs’ depressing environment( 28 ). Trust and communication between caregivers and HCWs were highlighted as a vital factor in enabling the use of tools for early identification. Caregivers mentioned how they were often uncertain about procedures performed by HCWs on their children and described how challenging it was to not be updated or to be provided with information about their infants' situation. Caregivers described that although they had entrusted the safekeeping of their child to medical staff, they were not always respected and acknowledged, often creating fear and disappointment. Many caregivers described a culture or belief that doctors “know it all” and have the child’s best interests in mind and should not be questioned. This may contribute to caregivers not being proactive in seeking information about their child. Alongside this, some caregivers reported a good working relationship with HCWs, while others reported a degree of mistrust. HCWs generally reported positive working relationships with caregivers, which they described as being essential to facilitate the provision of services. However, some HCWs described how they also found caregivers challenging to work with due to perceived, and possibly stereotyped belief that families have low literacy levels, which in turn affects their ability to understand and follow simple instructions. It was clear from our transcripts that HCWs in the NICU perceived that they worked in a challenging environment with constantly high levels of stress, often encountering difficult situations needing critical decisions to be made during service delivery.( 29 ) From our results, it is clear that implementing the GMA in the NICU would require good working relationships and communication between HCWs and caregivers. Other studies have demonstrated how the medical team's relationship with caregivers can impact the delivery of an intervention.( 30 , 31 ) HCWs having a positive perception of the relationship between them and caregivers, as well as vice versa, may make a big difference as to whether implementation of GMAs is possible in our setting.( 29 ) Our study has highlighted how vital it is to consider the capacity, knowledge, confidence, and competence of staff when implementing a new tool such as the GMA for early identification. HCWs reported that high workloads affected their work experience in the NICU, and staff shortages were the main factors affecting the quality of their work. A similar study in the general ICU at the same hospital reported similar sentiments from HCWs. They reported being aware of how the quality of the service was compromised due to a high workload, making them prone to errors and putting patient safety at risk. ( 32 ) This was also observed in the NICU during this study, where three to five nurses attended to more than fifty high-risk babies. Babies were often observed unattended, some crying for long periods as nurses were busy attending to the most medically needy babies. Babies receiving phototherapy were seen removing the gauze, which was used to cover their eyes for protection and to prevent eye damage. Too few staff and too many patients are familiar narratives in Malawi, with these challenging environments, such as the NICU, having negative consequences on the physical and psychological well-being of staff. ( 33 ) Some HCWs described how they favored introducing the GMA in the NICU, however, they quickly pointed out that staff shortages could jeopardize its implementation. A similar study in the US reported the importance of considering staff capacity and time, environmental challenges, and professional awareness when implementing a new intervention in the NICU. ( 34 ) Our study demonstrated that most HCWs were unaware of current trends in novel tools for early identification, however, they all described sound knowledge in identifying infants at risk of CP through the use of clinical history, signs, and symptoms. HCWs reported that they understood that depending only on clinical history, signs, and symptoms might mean that they might miss some infants with more subtle signs who may have needed further attention and referrals. Some HCWs interviewed further reported a lack of confidence in providing a diagnosis, as often the diagnosis of CP was not done in the NICU but in a follow-up clinic, and that this was the responsibility of specialists. Most participants interviewed were junior doctors, interns, and nurses, and clearly, consultants who may have felt more confident were not interviewed due to a lack of availability. It is clear, however, that junior doctors are therefore much more immediately available, and it might be useful to consider whether supporting their confidence and capacity in this realm would be helpful. Strengths and limitations This study has extensively explored caregivers' and healthcare professionals' experiences, highlighting how they can affect the implementation of early identification tools in the NICU. Weaknesses Most healthcare professionals’ interviews were with interns and junior doctors; therefore, their opinions may not be representative of all doctors, especially senior doctors and consultants CONCLUSIONS Our study has identified several factors that can affect GMA implementation. Caregiver-HCW relationship, inadequate staffing, and caregiver welfare may affect its implementation. Caregiver welfare includes caregiver support targeting health education, improved communication, and social support may need to be considered as it affects their perception of HCWs and the service they provide. Increased awareness of conditions and risk factors would help with the acceptability of interventions and provide necessary support to HCWs during their stay in the NICU. HCWs need support in terms of proper staffing, training in specific areas like the use of novel tools in early identification and early intervention to facilitate early referral of at-risk infants. Future research should explore interventions that can improve caregiver and HCWs relationships and the support provided to caregivers in similar settings. Abbreviations CP Cerebral Palsy GMA General Movement Assessment HCW Health Care Worker HINE Hammersmith Infant Neurologic Examination COMREC College of Medicine Research Ethics Committee SAVE Skills for the Vibrant Economy Declarations Clinical trial number Not applicable Competing interests No competing interests were declared Ethical Approval Ethical clearance was obtained from the Kamuzu University Research Committee (COMREC), approval number: P.01/23/3955. Additionally, approvals were obtained from the Queen Elizabeth Central Hospital and the Department of Paediatric and Child Health. Funding This study was funded by the Skills for the Vibrant Economy project (SAVE) of Kamuzu University and Health Sciences: Grant NO. IDA-68910 Author Contribution A.M., M.M., A.S., A.L.N.M., K.K., and M.G. designed and conceptualized the study. A.M. collected data and performed data analysis. A.M., M.M., A.S., A.L.N.M., K.K., and M.G. contributed to writing the manuscript. All authors approved the final version of the manuscript. Acknowledgments We acknowledge Queen Elizabeth Central Hospital, all caregivers in the NICU who took part in the study, and the staff members of Chatinkha nursery. Data Availability The data can be made available on a well-motivated request. References Sadowska M, Sarecka-Hujar B, Kopyta I. Cerebral palsy: Current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatric Disease and Treatment. Volume 16. Dove Medical Press Ltd; 2020. pp. 1505–18. Proposed definition and classification of cerebral palsy. 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Epidemiology of cerebral palsy in Malawi. Dev Med Child Neurol. 2025. Novak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J, et al. Early, accurate diagnosis and early intervention in cerebral palsy: Advances in diagnosis and treatment. Volume 171. JAMA Pediatrics. American Medical Association;; 2017. pp. 897–907. Glass HC, Li Y, Gardner M, Barkovich AJ, Novak I, McCulloch CE, et al. Early Identification of Cerebral Palsy Using Neonatal MRI and General Movements Assessment in a Cohort of High-Risk Term Neonates. Pediatr Neurol. 2021;118:20–5. Hadders-Algra M, Tacke U, Pietz J, Rupp A, Philippi H. Predictive value of the General Movements Assessment and Standardized Infant NeuroDevelopmental Assessment in infants at high risk of neurodevelopmental disorders. Dev Med Child Neurol. 2024;66(10):1361–8. Donald KA, Samia P, Kakooza-Mwesige A, Bearden D. Pediatric cerebral palsy in Africa: A systematic review. Semin Pediatr Neurol. 2014;21(1):30–5. 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The Knowledge Translation of Early Cerebral Palsy (KiTE CP) study: Implementing Screening among a High-risk Prospective Cohort of Australian Infants. J Pediatr. 2024;268. Donald KA, Samia P, Kakooza-Mwesige A, Bearden D. Pediatric cerebral palsy in Africa: A systematic review. Semin Pediatr Neurol. 2014;21(1):30–5. Valencia A, Viñals C, Alvarado E, Balderas M, Provasi J. Prechtl’s method to assess general movements: Inter-rater reliability during the preterm period. PLoS ONE. 2024;19(4 April). Hadders-Algra M, Tacke U, Pietz J, Rupp A, Philippi H. Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale. Dev Med Child Neurol. 2019;61(6):654–60. Armezzani M, Zamengo L. The theme-centred interview and the map of meanings: A phenomenological approach to the analysis of experience. Methods Psychol. 2024;11. Johnson JL, Adkins D, Chauvin S. QUALITATIVE RESEARCH IN PHARMACY EDUCATION A Review of the Quality Indicators of Rigor in Qualitative Research. Burger M, Frieg A, Louw QA. General movements as a predictive tool of the neurological outcome in very low and extremely low birth weight infants — A South African perspective. Early Hum Dev. 2011;87(4):303–8. Sandle M, Sheppard A, Fletcher AA, Berry M, DeVries N. Early identification of infants at risk of cerebral palsy:developing the use of general movement assessment in routine clinical practice in a tertiary neonatal unit in New zealand. N Z Med J. 2020;133(1514):63–70. Brelsford GM, Doheny KK. Religious and Spiritual Journeys: Brief Reflections from Mothers and Fathers in a Neonatal Intensive Care Unit (NICU). Pastoral Psychol. 2016;65(1):79–87. Gorsky KG, Butala S, House M, Moon C, Calvetti S, Khando T et al. Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives. Children. 2023;10(11). Oluoch D, Odinga N, Waithira C, Ngaiza G, Maluni J, Mutua E et al. Experiences of mothers in the context of a staffing intervention in select newborn units in Kenyan public hospitals. Int J Nurs Stud. 2025;172. Hall SL, Ryan DJ, Beatty J, Grubbs L. Recommendations for peer-to-peer support for NICU parents. Journal of Perinatology. Volume 35. Nature Publishing Group; 2015. pp. S9–13. Sen D, Boga M, Musitia P, Oluoch D, Adeniji Y, Odinga N et al. Emotional dimensions of nurses’ daily work in newborn units in Kenya: a qualitative study. BMC Public Health. 2025;25(1). Miller JJ, Serwint JR, Boss RD. Clinician–family relationships may impact neonatal intensive care: clinicians’ perspectives. J Perinatol. 2021;41(9):2208–16. Provenzi L, Barello S, Graffigna G. Caregiver Engagement in the Neonatal Intensive Care Unit: Parental Needs, Engagement Milestones, and Action Priorities for Neonatal Healthcare of Preterm Infants. 2015. Aljawad B, Miraj SA, Alameri F, Alzayer H. Family-centered care in neonatal and pediatric critical care units: a scoping review of interventions, barriers, and facilitators. BMC Pediatr. 2025;25(1). Banda Z, Simbota M, Mula C. Nurses’ perceptions on the effects of high nursing workload on patient care in an intensive care unit of a referral hospital in Malawi: a qualitative study. BMC Nurs. 2022;21(1). Bradley S, Kamwendo F, Chipeta E, Chimwaza W, de Pinho H, McAuliffe E. Too few staff, too many patients: A qualitative study of the impact on obstetric care providers and on quality of care in Malawi. BMC Pregnancy Childbirth. 2015;15(1). Godarzi Z, Rahimi O, Khalesi N, Soleimani F, Mohammadi N, Shamshiri AR. Nurses’ Opinions on the Barriers to Effective Implementation of Developmental Care in Neonatal Intensive Care Units. Crit Care Nurs. 2018;11(2). Tables Table 1 is available in the Supplementary Files section. Additional Declarations No competing interests reported. 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Mughogho","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA7klEQVRIiWNgGAWjYJACZiBOYGBvAzNI0cJzjGQtEmlEauGfdsb4dUFFbR6/5LM06YKKOgb+9gOsm3nwaJG4nWNmPePM8WLJ2WnHpGecOcwgcSaB7TY+LQxALca8bccSN9xOb5PmbTvAwHCDge12Dh4d8nAtN48DtfyrY5AnpMXgdo7xY962msQNN9iOSfM2MDMYENJieDutjJnnzIHEmT1pydY8xw7zGJ5JbLv9B48WudvJmz/zVNQl9rMfM7zNU1MnJ3f88LGbM/B5n4GBTYKB4TCcBwwrxgb8GoAx+YGBoY6QolEwCkbBKBjJAAAZQE5nDH/s9gAAAABJRU5ErkJggg==","orcid":"","institution":"Kamuzu University of Health Sciences","correspondingAuthor":true,"prefix":"","firstName":"Anderson","middleName":"","lastName":"Mughogho","suffix":""},{"id":587557383,"identity":"27f3a509-748a-46d7-9bac-7732468b171f","order_by":1,"name":"Macpherson Mallewa","email":"","orcid":"","institution":"Kamuzu University of Health Sciences","correspondingAuthor":false,"prefix":"","firstName":"Macpherson","middleName":"","lastName":"Mallewa","suffix":""},{"id":587557385,"identity":"798ec820-0be7-4569-a590-7824cc095d05","order_by":2,"name":"Kondwani Kawaza","email":"","orcid":"","institution":"Kamuzu University of Health Sciences","correspondingAuthor":false,"prefix":"","firstName":"Kondwani","middleName":"","lastName":"Kawaza","suffix":""},{"id":587557387,"identity":"95b6bd9d-7a58-4db6-88b8-20da1bbf85a9","order_by":3,"name":"Alicia Spittle","email":"","orcid":"","institution":"University of Melbourne","correspondingAuthor":false,"prefix":"","firstName":"Alicia","middleName":"","lastName":"Spittle","suffix":""},{"id":587557389,"identity":"8b179b10-469d-4bd0-8cf2-8c498bf3ec1f","order_by":4,"name":"Alinane Linda Nyondo -Mipando","email":"","orcid":"","institution":"Kamuzu University of Health Sciences","correspondingAuthor":false,"prefix":"","firstName":"Alinane","middleName":"Linda Nyondo","lastName":"-Mipando","suffix":""},{"id":587557390,"identity":"0816a249-8286-4fe0-bb7a-95cd9d30b131","order_by":5,"name":"Melissa Gladstone","email":"","orcid":"","institution":"University of Liverpool","correspondingAuthor":false,"prefix":"","firstName":"Melissa","middleName":"","lastName":"Gladstone","suffix":""}],"badges":[],"createdAt":"2026-01-07 04:23:23","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8536627/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8536627/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":102962060,"identity":"3c0942ea-8f82-4908-8032-59a4a8f69fb8","added_by":"auto","created_at":"2026-02-19 03:58:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1100980,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8536627/v1/3a2864c9-3172-4c0c-9ee3-bd259cfbb51c.pdf"},{"id":102219210,"identity":"1e35a9fa-4f3a-41ea-a1c8-6a7fc018e1c9","added_by":"auto","created_at":"2026-02-09 13:27:42","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":20380,"visible":true,"origin":"","legend":"","description":"","filename":"Table1.Demographicanalysisofparticipants.docx","url":"https://assets-eu.researchsquare.com/files/rs-8536627/v1/3e25aecd1e788bf5233a0293.docx"},{"id":102219209,"identity":"92593a9b-cdbe-4486-b71f-e7d1b5c7918a","added_by":"auto","created_at":"2026-02-09 13:27:42","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":30364,"visible":true,"origin":"","legend":"","description":"","filename":"APPENDIX4ACaregivers.docx","url":"https://assets-eu.researchsquare.com/files/rs-8536627/v1/51331218fd2de772f0247876.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"The feasibility of implementing the General Movement Assessment tool in the Neonatal Intensive Care Unit of a Tertiary Hospital in Malawi: A qualitative study of caregivers and healthcare workers’ experiences.","fulltext":[{"header":"What this paper adds","content":"\u003cul\u003e\n \u003cli\u003eImplementing GMA in a NICU setting in Malawi should involve supporting good working relationships between caregivers and healthcare workers\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eHealthcare workers in the NICU need to have basic training regarding screening and early identification of high-risk infants.\u003c/li\u003e\n \u003cli\u003eCaregivers and healthcare workers\u0026apos; lived experience can be a barrier or facilitator for implementing early screening tools in the NICU.\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"INTRODUCTION","content":"\u003cp\u003eCerebral palsy (CP) is a common childhood neurodevelopmental disability affecting millions of children worldwide.(\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Prevalence is reported to be the highest in low\u0026mdash;and middle-income countries due to challenges to access healthcare, poor prenatal and perinatal care, and a higher incidence of birth asphyxia.(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Pooled prevalence ratios in sub-Saharan Africa are estimated to be between 2.7 and 3.9%.(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) These higher prevalences are usually associated with the more severe forms of CP, which often can further increase the burden of having a CP child in the family.(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) A recent epidemiological study from Malawi has reported a prevalence of 1.7 per 1000 births, which is lower than the prevalence reported across Africa. However, the findings of this study reflect an identification bias of the Key Informants' use, as they identified more severe cases than milder ones of grade I and II on Gross Motor Function Classification (GMFC). Most cases reported scored level IV and V on GMFC, which affects the generalizability to the broader CP population.(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eEarly identification of infants with CP, or at risk of CP, is increasingly becoming an area of interest for researchers, due to evidence that clinical diagnosis is possible as early as a few weeks to six months corrected gestational age. This is achieved through the use of novel early identification tools, such as the General Movement Assessment (GMA) and the Hammersmith Infant Neurological Examination (HINE), in conjunction with the use of earlier Magnetic Resonance Imaging (MRI). These are now widely used in the neonatal intensive care units (NICU) and follow-up clinics in high-income countries(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), particularly as new evidence emerges on the highly predictive value of these tools for detecting infants at risk.(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) Furthermore, another tool, the Standardized Infant NeuroDvelopmental Assessment (SINDA),(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e) has demonstrated similar predictive validity to the GMA and HINE at a corrected age of three months.\u003c/p\u003e \u003cp\u003eCurrently, in many low-resource settings, especially in Africa, early identification and formal diagnosis of infants at risk for CP remain challenging. Contributing factors include limited access to MRI, a shortage of specialists in pediatric neurology and neuro disability, and barriers such as late presentation, lack of follow-up, financial constraints, and the stigma surrounding disability. (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) The GMA, HINE, and SINDA appear to be better suited for these low-resource settings than other tools, due to their high predictive power and applicability from birth, whereas neuroimaging is prohibitively expensive. The HINE, although effective like the GMA, has a recommendation for use of 2 to 24 months, similar to the SINDA, which demonstrates excellent accuracy at a corrected age of three months. However, this is often too late in our context, as many infants would have been discharged and are difficult to track. The GMA assesses infants' spontaneous movements from birth to about five months post-term. GMA is non-intrusive, non-invasive, and cost-effective, making it a tool that could be implemented in resource-limited settings in the early months after birth. (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). It has also been demonstrated to be more specific and sensitive than HINE. (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) Implementing early identification tools, however, requires feasibility studies tailored to the specific context.\u003c/p\u003e \u003cp\u003eStudies in the USA and Australia have investigated the feasibility of implementing the GMA, reporting that it was possible within their existing follow-up programs, which are run through clinics.(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) Researchers demonstrated that implementing GMA using new processes improved the number of infants examined by the GMA. More importantly, the changing implementation practice raised health providers\u0026rsquo; awareness of the need for early intervention in at-risk infants, leading to earlier diagnoses. The international guidelines on early detection of CP recommend that in most low-resource settings (including Malawi), the GMA and HINE can be used, however, there is limited knowledge on how these tools should be implemented in these settings.(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eThe GMAs' demonstrated ability to use during the writhing period makes it the preferred tool for implementation in the NICU. It requires minimal handling of medically fragile infants. (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)In contrast, the SINDA demonstrates accuracy at three months and the HINE at two months, making them suitable for post discharge outpatient assessment rather than in the NICU. (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)Consequently, the GMA could be a more appropriate tool for early detection in the NICU, while the SINDA and HINE would be better suited for follow-up clinics.(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eIn this study, we sought to explore caregivers' lived experiences in the NICU and the use of the GMA tool. We also explored healthcare workers' (HCWs) perceptions of early identification tools and their confidence in diagnosing and referring at-risk infants. The overall aim of the study was to determine the feasibility of implementing the GMA tool in the referral (tertiary) NICU of a resource-limited setting in Africa. Understanding the perceptions of caregivers and HCWs will provide us with invaluable information to determine the feasibility of use and future needs for implementation.\u003c/p\u003e"},{"header":"METHOD","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eThis study used in-depth interviews to explore caregivers\u0026rsquo; and healthcare workers\u0026rsquo; perspectives on their experiences in the NICU. We used a phenomenological approach, believing that the verbatim of those interviewed validly reflects the views and perceptions of those we study.(\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) These methods enable the gathering of rich data from participants who can express themselves freely, providing detailed information for understanding the present situation.(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eResearch setting\u003c/h3\u003e\n\u003cp\u003eThe study was conducted in a 40-bed capacity neonatal unit of a tertiary hospital in Blantyre, Malawi. In addition to admissions from within the hospital, there are referrals from surrounding health centres, private hospitals, and districts. The NICU is staffed by nurses (registered and technicians) and clinicians (medical officers, registrars, interns, and consultants).\u003c/p\u003e\n\u003ch3\u003eRecruitment and selection\u003c/h3\u003e\n\u003cp\u003eWe trained a study nurse to conveniently sample caregivers of infants at high risk of CP who had undergone a GM assessment and were about to be discharged from the NICU.\u003c/p\u003e \u003cp\u003eInternal hospital communications provided staff members with information about the study. The lead author (AM) then approached clinicians on duty in the NICU, who offered to take part.\u003c/p\u003e\n\u003ch3\u003eInterviews\u003c/h3\u003e\n\u003cp\u003eIn-depth interviews were conducted with both caregivers and HCWs, facilitated by guides. After piloting, we adjusted the topic guide. The caregiver interview guide was translated into Chichewa, while HCW interviews were in English. Informed consent was obtained before the interview. Caregiver interviews lasted 15\u0026ndash;60 minutes, and HCW interviews lasted 25\u0026ndash;90 minutes and were conducted in a quiet room near the NICU. A well-trained and experienced female researcher (JMN) with a master\u0026rsquo;s degree in education was hired to conduct all the interviews. She underwent an orientation of all the research materials done by AM. AM and ALNM participated in some of the pilot interviews. JM was not known to all participants before the interviews. Ethical approval was gained from Kamuzu University of Health Sciences, number P.01/23/3955.\u003c/p\u003e\n\u003ch3\u003eAnalysis\u003c/h3\u003e\n\u003cp\u003eAn experienced transcriber transcribed all interviews verbatim. Transcripts were reviewed and compared with audio files to ascertain quality. Translation into English of the Chichewa transcripts was then conducted. Transcripts were uploaded into Dedoose software, version 9.054 (SocioCultural Research Consultants, Manhattan Beach, CA, USA). AM created codes deductively from the study objectives and inductively from the data available. After an iterative process, a list of codes was shared with MG and ALNM, who contributed to ensuring a consistent coding structure before the final coding framework. This was discussed further with the team to create a thematic map showing the experience of caregivers and HCWs in the NICU. Data saturation was achieved after this iterative process and determining a final sample size. Data triangulation of the themes from caregivers and HCWs was done at the point of discussion, where themes that may be considered barriers and facilitators to implementing the GMA in the NICU were identified.\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003eAll 15 caregivers were female and were biological mothers of the neonates admitted to the NICU. Their ages ranged between 18 and 45. The HCWs comprised six clinicians (three medical officers, two registrars, and one medical intern) and four staff nurses (two nurse technicians and two registered nurses). The majority of HCWs were female, except for two males (a nurse and a medical officer).\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCAREGIVERS\u0026apos; EXPERIENCE AND JOURNEY IN THE NICU\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe identified four key themes that characterized caregivers\u0026rsquo; experiences in the NICU, offering crucial insights into what could affect the feasibility of implementation of the GMA in a tertiary neonatal unit in Malawi. The themes are outlined in the preceding sections:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e1.\u0026nbsp; \u0026nbsp;\u0026nbsp;Support for caregivers:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSupport for caregivers is vital \u0026ndash; whether this is through their spirituality, staff, peers, and/or family.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSpirituality as a Source of Strength and Acceptance\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCaregivers described how they turned to faith and spiritual beliefs to find hope and resilience during their child\u0026rsquo;s NICU stay. Their belief that outcomes were in God\u0026apos;s hands helped them accept the situation, offering emotional support in a time of uncertainty.\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;\u003cem\u003eStaying here is a challenging experience. However, I have nothing to worry about; I know everything will be fine with my baby\u0026hellip;I have accepted the situation about my baby since it\u0026apos;s God\u0026apos;s will for this to happen.\u0026rdquo;.\u0026nbsp;\u003c/em\u003e(CG9, CG15)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eThe Power of Social Support: Staff, Peers, and Family\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEmotional and practical support from nurses, fellow caregivers, and family members was described as playing an important role in caregivers\u0026rsquo; experiences. Positive relationships with staff build a sense of safety, while peer networks provide encouragement and enable a shared solidarity.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;The relationship is good; they (nurses) are helping my child every time he needs attention; they go and check on him, they treat us well, and without them, our babies cannot get better\u0026hellip;.my mum is here with me and doing everything for me\u0026hellip;\u0026hellip;\u0026hellip;I have made friends here, we share things, they also encourage and give me advice.\u0026rdquo;\u003c/em\u003e (CG13) (CG8) (CG4)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2.\u0026nbsp; \u0026nbsp;\u0026nbsp;Health System Factors\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHow health care workers interact and communicate with parents may enable early identification tools, such as the GMA, to be feasible for use.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;Fragile Trust in Healthcare Providers and Systems\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSome caregivers described how challenging it was when healthcare staff failed to keep them informed about their infant\u0026apos;s condition or the procedures being performed. \u0026nbsp;They explained how they had entrusted the safekeeping and care of their child to medical staff. Still, the lack of communication left them feeling overlooked and disrespected, leading to fear and loss of confidence in the staff. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u0026ldquo;\u003c/em\u003e\u003c/strong\u003e\u003cem\u003eSometimes, we are not told what they are doing with our baby; you need to know. The doctors and nurses should also tell us the good and bad things. As a mother, you get disappointed when nurses do something to your babies without telling you\u0026hellip;., you observe and ask yourself, why are they not telling me? What is wrong with my baby?\u0026rdquo;\u003c/em\u003e (CG9)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSome caregivers were not happy with their babies being videotaped. They did not trust the HCWs\u0026apos; intention of taking videos. They believed their infant\u0026apos;s videos could be used for sourcing funds from donors or shared on social media like WhatsApp or TikTok.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAah, at first, I was not satisfied because I was wondering about the video that they would take and what they would use it for. The baby is too young, and will they not be posting anything on social media like WhatsApp? I was worried. But after explaining my worries to them, it was then that I understood the reason why they were to take the video.\u0026nbsp;\u003c/em\u003e(CG1)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e3. \u003cstrong\u003eGaps and Strengths in Health Education and Communication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCaregivers reported that healthcare workers usually provided information regarding infection prevention in the NICU, as well as explaining what signs of infection or severe illness to look out for when at home. Caregivers reported that they were also provided with general information regarding routines to follow regarding baby feeding times. None of the caregivers mentioned being provided with information about signs of neurodisability or developmental difficulties, and how to seek help for this if they were concerned or worried.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;They always advise us on how to care for our babies, changing diapers and keeping them clean\u0026hellip;.in the Kangaroo, they advise us on how to keep the baby warm all the time. They tell us how to feed the babies; some use tubes because they cannot suck the breast.\u0026rdquo;\u0026nbsp;\u003c/em\u003e(CG7)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimited awareness of Cerebral Palsy and its causes:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eVery few of the caregivers relayed knowledge or understanding as to the causes of cerebral palsy. One caregiver described an issue with high blood pressure, but few of the others provided any reasoning or understanding as to why their child might have a developmental difficulty.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I am the one with the problem; my problem was high blood pressure during pregnancy, and labour just started before the due date had arrived. There are many causes, though.\u0026rdquo;\u003c/em\u003e (CG3)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e4. \u003cstrong\u003e\u0026nbsp;Economic Strain During NICU Admission\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFinancial hardships were a consistent burden, as caregivers struggled to afford basic necessities. Hospital-provided resources were limited, especially for those without nearby family support, exacerbating stress during hospitalization.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We lack food here. It is only provided to one person. It is sad to see your guardian not getting food, ending up sharing the same little food meant for one person\u0026hellip;\u003c/em\u003e(CG10) \u003cem\u003eThere is always a food shortage, especially when you don\u0026rsquo;t have relatives to bring you extra food from home\u0026rsquo;\u0026rsquo;\u003c/em\u003e(CG14).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHEALTHCARE WORKERS\u0026apos; EXPERIENCE IN THE NICU\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe identified six themes that characterized HCWs\u0026apos; experience of early identification of cerebral palsy in the NICU.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e1. Limited awareness of early identification tools and the provision of a diagnosis of CP\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMost HCWs were unaware of the tools recommended globally for identifying infants at risk of developing CP. The use of the Apgar score, clinical experience, and clinical examination was reported as the main ways of identifying infants at risk of CP.\u003c/p\u003e\n\u003cp\u003eOne medical officer described: \u003cem\u003e\u0026lsquo;\u0026rsquo;The babies who are at risk of CP are associated with birth asphyxia\u0026hellip;. We also look at posturing, as for a normal baby, their posture needs to be froggy and if the posture is extended, it is considered an abnormal posture\u0026hellip;I think it depends on the level of knowledge and experience. For example, my colleague who is the Registrar does not have problems with identifying CP\u0026rsquo;\u0026rsquo;.\u003c/em\u003e (HCW1)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003cstrong\u003eLow Familiarity and Mixed Perceptions of the GMA Tool\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMost participants did not voice any knowledge regarding early identification tools such as HINE and GMA. While they considered GMA a good tool, when it was described to them, they also expressed worry about adding more work to their already busy schedule by using a specific tool to identify infants at risk of CP.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I do not use or know any tool. My impression is that GMA can be a good tool. My only worry is that you may be adding more work, but if you can do more to help somebody based on that extra work, then you will rather do it because there is no point spending the whole day, but then you are missing out some children who are at risk of developing CP. I will be happy to have such a tool.\u0026rdquo; (HCW4).\u003c/em\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2. Informal and inconsistent referral processes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHCWs described the process for referral of those children whom they felt might have CP in the NICU. They described how infants identified in the NICU at risk of developing CP were sometimes referred to the general clinic or physiotherapy department for further management, but with no set processes or criteria.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;There is no set procedure for the identification of children at risk of CP. For babies with asphyxia, we examine and see that the baby is having signs like being floppy or having reduced reflexes, then we know that the baby has Hypoxic Ischemic Encephalopathy. On discharge, we advise that they book a general medical clinic, and we also tell them to book physiotherapy\u0026rdquo;.\u003c/em\u003e (HCW5)\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3. Teamwork as a coping mechanism amid resource constraints\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTeamwork and collaboration among HCWs were reported to be very valuable in coping with the stress of understaffing, the challenging working environment, and high patient loads in the NICU. They reported a good working relationship between doctors and nurses.\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;\u003cem\u003eMy relationship with my fellow doctors is good because we all know that we must finish the ward round. I feel like the relationship amongst members of staff here is good because if you do not know something as an intern, you and the seniors will help\u003c/em\u003e.\u0026rdquo; (HCW5)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e4. Stereotypical perceptions (Caregiver misunderstandings and provider bias)\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAn obvious tension was identified with HCWs describing how they perceived caregivers as troublesome, ignorant, and challenging.\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;\u003cem\u003eI feel like mothers are very difficult people to deal with, and have stories we don\u0026rsquo;t know, like how long it took for them to have that baby. Maybe they stayed a very long time, maybe that is the only child, or they wanted a boy child, and finally they have one.\u0026rdquo;\u003c/em\u003e (HCW4)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e5. Staff numbers and roles (capacity within the NICU)\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHCWs highlighted systemic issues with staff ratios, burnout, and the need to engage more HCWs in the NICU. They reported how having very few nurses and doctors managing high caseloads of infants admitted to the NICU might affect the quality of services delivered. HCWs narrated on who was responsible for providing a CP diagnosis.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Most of the time, we are supposed to be seven nurses during the day. But currently, we are 3 or 4 nurses. We were supposed to have five nurses during the night, but mostly, there are two or three. The numbers vary depending on the availability of staff\u003c/em\u003e.\u0026rdquo; (HCW10)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;6. Uncertainty and hierarchy in providing diagnoses of cerebral palsy\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants expressed their views on who should provide the diagnosis and their confidence in doing so. While some HCWs reported having confidence in identifying Infants at risk, diagnosis was reserved for seniors who conduct a clinic where diagnosis is provided. Infants identified in the NICU are usually referred to an outpatient clinic managed by a consultant pediatrician.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My job ends at booking them clinics. So, I am not part of whatever happens at the clinic; that is why I do not have practical experience of what happens. Those who make diagnoses are the ones who attend clinics; usually those doing masters and PhD; the Registrars also are the ones who do the diagnosis and clinics.\u0026rdquo;\u003c/em\u003e (HCW6)\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThis study \u003cb\u003ehas provided us with a deeper perspective on what it would take to implement the GMA tool in NICUs in Malawi\u003c/b\u003e. Through this study, we have aimed to explore caregivers\u0026rsquo; journey and experiences in the NICU and their perceptions of the GM assessment.\u003c/p\u003e \u003cp\u003eOur study \u003cb\u003eis one of the very few that has delved deeply into exploring caregivers' and HCWs' experiences in the NICU to determine barriers and facilitators to implementing GMA\u003c/b\u003e. A similar study done in South Africa reported on the feasibility of the GMA, through examining the sensitivity and specificity of the tool rather than any more in-depth analysis of the actual barriers and facilitators in implementing the tool within their context.(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) Another study that examined other aspects besides the tool's sensitivity and specificity was a study done in New Zealand.(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) In this study, feasibility was assessed through determining the sensitivity and specificity of the GMA alongside an assessment of the fidelity of documentation, the quality of discussions with the clinical team, as well as communication with families. They demonstrated that establishing good collaboration among stakeholders was vital, while a lack of resources was the only perceived barrier to implementation.(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) While all these aspects of feasibility are significant, it is also important to concentrate on the experiences of caregivers and HCWs to truly understand the issues with the implementation of a novel tool for early identification.\u003c/p\u003e \u003cp\u003eThe key findings of our study identify several factors that need to be considered when implementing an early identification tool, such as the GMA. We have demonstrated that caregivers who are admitted to the NICU have a journey characterized by the hope of a better outcome for the baby, which is affected by either positive or negative support from their spirituality, as well as family and community support. Our study also highlights the importance of communication between HCWs and caregivers, the caregiver\u0026rsquo;s knowledge of health issues affecting their infant, and finally, the capacity, knowledge, confidence, and competence of staff.\u003c/p\u003e \u003cp\u003eAdmission to the NICU takes away the joy and exposes caregivers to stress, anxiety, and fear. To cope with such, caregivers resort to spirituality, relying on faith and hoping that their infant will be healed through their belief in God. Most caregivers interviewed described spirituality as a key source of strength, trusting that God would ensure a positive outcome. None of the caregivers blamed God or viewed their baby\u0026rsquo;s admission as divine punishment or abandonment. This optimistic outlook likely reflects Malawians\u0026rsquo; deeply religious culture and strong family ties, both linked to positive coping strategies.(\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) Spiritual care might be considered an ingredient of holistic support for caregivers in the NICU, boosting caregivers\u0026rsquo; confidence and encouraging them to seek support from HCWs.(\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) Literature on how spirituality can affect the acceptability of early diagnoses is scanty, however, in our study, caregivers with positive coping skills described how they were more likely to accept interventions they perceived as helpful to the infant's development. Although all caregivers interviewed demonstrated positive coping skills, most caregivers were of primary education, lacking knowledge of the risks associated with their baby being admitted to the NICU.\u003c/p\u003e \u003cp\u003e Caregivers emphasized the benefits of support from both family and hospital staff when they were first admitted to the NICU. Some reported feeling cared for and described positive relationships with the nurses, who they believed were dedicated to their babies\u0026rsquo; recovery. Good communication between healthcare workers and caregivers played a key role in building trust, consistent with findings that strong HCW-family interaction reduces uncertainty and improves the NICU experience.(\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) Support from family also motivates caregivers to stay emotionally strong. However, some noted limited support due to families living far away and facing financial barriers to visiting or making phone calls. Psychosocial support is crucial for individuals facing stressful events, helping to mitigate the risk of mental health issues.(\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) While formal peer support systems are not in place, caregivers naturally support one another, and in Malawi, the cultural practice of \u003cem\u003eumunthu\u003c/em\u003e, a communal way of caring that is embedded in daily life, can make a big difference to caregivers.(\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) Informal peer support is reported to be a key coping strategy employed by nurses in the NICUs\u0026rsquo; depressing environment(\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e\u003cb\u003eTrust and communication between caregivers and HCWs\u003c/b\u003e were highlighted as a vital factor in enabling the use of tools for early identification. Caregivers mentioned how they were often uncertain about procedures performed by HCWs on their children and described how challenging it was to not be updated or to be provided with information about their infants' situation. Caregivers described that although they had entrusted the safekeeping of their child to medical staff, they were not always respected and acknowledged, often creating fear and disappointment. Many caregivers described a culture or belief that doctors \u0026ldquo;know it all\u0026rdquo; and have the child\u0026rsquo;s best interests in mind and should not be questioned. This may contribute to caregivers not being proactive in seeking information about their child. Alongside this, some caregivers reported a good working relationship with HCWs, while others reported a degree of mistrust. HCWs generally reported positive working relationships with caregivers, which they described as being essential to facilitate the provision of services. However, some HCWs described how they also found caregivers challenging to work with due to perceived, and possibly stereotyped belief that families have low literacy levels, which in turn affects their ability to understand and follow simple instructions. It was clear from our transcripts that HCWs in the NICU perceived that they worked in a challenging environment with constantly high levels of stress, often encountering difficult situations needing critical decisions to be made during service delivery.(\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e) From our results, it is clear that implementing the GMA in the NICU would require good working relationships and communication between HCWs and caregivers. Other studies have demonstrated how the medical team's relationship with caregivers can impact the delivery of an intervention.(\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e) HCWs having a positive perception of the relationship between them and caregivers, as well as vice versa, may make a big difference as to whether implementation of GMAs is possible in our setting.(\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eOur study has highlighted how vital it is to consider the \u003cb\u003ecapacity, knowledge, confidence, and competence of staff when implementing a new tool such as the GMA for early identification.\u003c/b\u003e HCWs reported that \u003cb\u003ehigh workloads\u003c/b\u003e affected their work experience in the NICU, and staff shortages were the main factors affecting the quality of their work. A similar study in the general ICU at the same hospital reported similar sentiments from HCWs. They reported being aware of how the quality of the service was compromised due to a high workload, making them prone to errors and putting patient safety at risk. (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e) This was also observed in the NICU during this study, where three to five nurses attended to more than fifty high-risk babies. Babies were often observed unattended, some crying for long periods as nurses were busy attending to the most medically needy babies. Babies receiving phototherapy were seen removing the gauze, which was used to cover their eyes for protection and to prevent eye damage. Too few staff and too many patients are familiar narratives in Malawi, with these challenging environments, such as the NICU, having negative consequences on the physical and psychological well-being of staff. (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e) Some HCWs described how they favored introducing the GMA in the NICU, however, they quickly pointed out that staff shortages could jeopardize its implementation. A similar study in the US reported the importance of considering staff capacity and time, environmental challenges, and professional awareness when implementing a new intervention in the NICU. (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eOur study demonstrated that \u003cb\u003emost HCWs were unaware of current trends in novel tools\u003c/b\u003e for early identification, however, they all described sound knowledge in identifying infants at risk of CP through the use of clinical history, signs, and symptoms. HCWs reported that they understood that depending only on clinical history, signs, and symptoms might mean that they might miss some infants with more subtle signs who may have needed further attention and referrals. Some HCWs interviewed further reported a lack of confidence in providing a diagnosis, as often the diagnosis of CP was not done in the NICU but in a follow-up clinic, and that this was the responsibility of specialists. Most participants interviewed were junior doctors, interns, and nurses, and clearly, consultants who may have felt more confident were not interviewed due to a lack of availability. It is clear, however, that junior doctors are therefore much more immediately available, and it might be useful to consider whether supporting their confidence and capacity in this realm would be helpful.\u003c/p\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eThis study has extensively explored caregivers' and healthcare professionals' experiences, highlighting how they can affect the implementation of early identification tools in the NICU.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eWeaknesses\u003c/h2\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eMost healthcare professionals\u0026rsquo; interviews were with interns and junior doctors; therefore, their opinions may not be representative of all doctors, especially senior doctors and consultants\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"CONCLUSIONS","content":"\u003cp\u003eOur study has identified several factors that can affect GMA implementation. Caregiver-HCW relationship, inadequate staffing, and caregiver welfare may affect its implementation. Caregiver welfare includes caregiver support targeting health education, improved communication, and social support may need to be considered as it affects their perception of HCWs and the service they provide. Increased awareness of conditions and risk factors would help with the acceptability of interventions and provide necessary support to HCWs during their stay in the NICU. HCWs need support in terms of proper staffing, training in specific areas like the use of novel tools in early identification and early intervention to facilitate early referral of at-risk infants. Future research should explore interventions that can improve caregiver and HCWs relationships and the support provided to caregivers in similar settings.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eCerebral Palsy\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eGMA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eGeneral Movement Assessment\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHCW\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHealth Care Worker\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHINE\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHammersmith Infant Neurologic Examination\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCOMREC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eCollege of Medicine Research Ethics Committee\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eSAVE\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eSkills for the Vibrant Economy\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003ch2\u003eClinical trial number\u003c/h2\u003e \u003cp\u003eNot applicable\u003c/p\u003e \u003ch2\u003eCompeting interests\u003c/h2\u003e \u003cp\u003eNo competing interests were declared\u003c/p\u003e\u003ch2\u003eEthical Approval\u003c/h2\u003e \u003cp\u003e Ethical clearance was obtained from the Kamuzu University Research Committee (COMREC), approval number: P.01/23/3955. Additionally, approvals were obtained from the Queen Elizabeth Central Hospital and the Department of Paediatric and Child Health.\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis study was funded by the Skills for the Vibrant Economy project (SAVE) of Kamuzu University and Health Sciences: Grant NO. IDA-68910\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eA.M., M.M., A.S., A.L.N.M., K.K., and M.G. designed and conceptualized the study. A.M. collected data and performed data analysis. A.M., M.M., A.S., A.L.N.M., K.K., and M.G. contributed to writing the manuscript. All authors approved the final version of the manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgments\u003c/h2\u003e \u003cp\u003e We acknowledge Queen Elizabeth Central Hospital, all caregivers in the NICU who took part in the study, and the staff members of Chatinkha nursery.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe data can be made available on a well-motivated request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eSadowska M, Sarecka-Hujar B, Kopyta I. Cerebral palsy: Current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatric Disease and Treatment. Volume 16. Dove Medical Press Ltd; 2020. pp. 1505\u0026ndash;18.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eProposed definition and classification of cerebral palsy. April 2005. Dev Med Child Neurol. 2007;47(8):571\u0026ndash;571.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M. A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology. Volume 49. Blackwell Publishing Ltd; 2007. pp. 8\u0026ndash;14.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMcIntyre S, Goldsmith S, Webb A, Ehlinger V, Hollung SJ, McConnell K, et al. Global prevalence of cerebral palsy: A systematic analysis. Dev Med Child Neurol. 2022;64(12):1494\u0026ndash;506.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAbate BB, Tegegne KM, Zemariam AB, Alamaw AW, Kassa MA, Kitaw TA et al. Magnitude and clinical characteristics of cerebral palsy among children in Africa: A systematic review and meta-analysis. PLOS Global Public Health. 2024;4(6 June).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVadivelan K, Sekar P, Sruthi SS, Gopichandran V. Burden of caregivers of children with cerebral palsy: An intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health. 2020;20(1).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKatangwe-Chirwa TJ, Jahan I, Chitedze A, Mankhokwe T, Mughogho A, Kamanga P et al. Epidemiology of cerebral palsy in Malawi. Dev Med Child Neurol. 2025.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNovak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J, et al. Early, accurate diagnosis and early intervention in cerebral palsy: Advances in diagnosis and treatment. Volume 171. JAMA Pediatrics. American Medical Association;; 2017. pp. 897\u0026ndash;907.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGlass HC, Li Y, Gardner M, Barkovich AJ, Novak I, McCulloch CE, et al. Early Identification of Cerebral Palsy Using Neonatal MRI and General Movements Assessment in a Cohort of High-Risk Term Neonates. Pediatr Neurol. 2021;118:20\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHadders-Algra M, Tacke U, Pietz J, Rupp A, Philippi H. Predictive value of the General Movements Assessment and Standardized Infant NeuroDevelopmental Assessment in infants at high risk of neurodevelopmental disorders. Dev Med Child Neurol. 2024;66(10):1361\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDonald KA, Samia P, Kakooza-Mwesige A, Bearden D. Pediatric cerebral palsy in Africa: A systematic review. Semin Pediatr Neurol. 2014;21(1):30\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNovak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-hernandez J, et al. Early, accurate diagnosis and early intervention in cerebral palsy: Advances in diagnosis and treatment. JAMA Pediatr. 2017;171(9):897\u0026ndash;907.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSnider LM, Majnemer A, Mazer B, Campbell S, Bos AF. A comparison of the general movements assessment with traditional approaches to newborn and infant assessment: Concurrent validity. Early Hum Dev. 2008;84(5):297\u0026ndash;303.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEinspieler C, Bos AF, Libertus ME, Marschik PB, Ford R. The General Movement Assessment Helps Us to Identify Preterm Infants at Risk for Cognitive Dysfunction. 2016;7(March):1\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eByrne R, Noritz G, Maitre NL. Implementation of Early Diagnosis and Intervention Guidelines for Cerebral Palsy in a High-Risk Infant Follow-Up Clinic. Pediatr Neurol. 2017;76:66\u0026ndash;71.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKwong AKL, Eeles AL, Anderson PJ, Badawi N, Boyd RN, Cameron KL et al. The Knowledge Translation of Early Cerebral Palsy (KiTE CP) study: Implementing Screening among a High-risk Prospective Cohort of Australian Infants. J Pediatr. 2024;268.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDonald KA, Samia P, Kakooza-Mwesige A, Bearden D. Pediatric cerebral palsy in Africa: A systematic review. Semin Pediatr Neurol. 2014;21(1):30\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eValencia A, Vi\u0026ntilde;als C, Alvarado E, Balderas M, Provasi J. Prechtl\u0026rsquo;s method to assess general movements: Inter-rater reliability during the preterm period. PLoS ONE. 2024;19(4 April).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHadders-Algra M, Tacke U, Pietz J, Rupp A, Philippi H. Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale. Dev Med Child Neurol. 2019;61(6):654\u0026ndash;60.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eArmezzani M, Zamengo L. The theme-centred interview and the map of meanings: A phenomenological approach to the analysis of experience. Methods Psychol. 2024;11.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJohnson JL, Adkins D, Chauvin S. QUALITATIVE RESEARCH IN PHARMACY EDUCATION A Review of the Quality Indicators of Rigor in Qualitative Research.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBurger M, Frieg A, Louw QA. General movements as a predictive tool of the neurological outcome in very low and extremely low birth weight infants \u0026mdash; A South African perspective. Early Hum Dev. 2011;87(4):303\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSandle M, Sheppard A, Fletcher AA, Berry M, DeVries N. Early identification of infants at risk of cerebral palsy:developing the use of general movement assessment in routine clinical practice in a tertiary neonatal unit in New zealand. N Z Med J. 2020;133(1514):63\u0026ndash;70.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBrelsford GM, Doheny KK. Religious and Spiritual Journeys: Brief Reflections from Mothers and Fathers in a Neonatal Intensive Care Unit (NICU). Pastoral Psychol. 2016;65(1):79\u0026ndash;87.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGorsky KG, Butala S, House M, Moon C, Calvetti S, Khando T et al. Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives. Children. 2023;10(11).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOluoch D, Odinga N, Waithira C, Ngaiza G, Maluni J, Mutua E et al. Experiences of mothers in the context of a staffing intervention in select newborn units in Kenyan public hospitals. Int J Nurs Stud. 2025;172.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHall SL, Ryan DJ, Beatty J, Grubbs L. Recommendations for peer-to-peer support for NICU parents. Journal of Perinatology. Volume 35. Nature Publishing Group; 2015. pp. S9\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSen D, Boga M, Musitia P, Oluoch D, Adeniji Y, Odinga N et al. Emotional dimensions of nurses\u0026rsquo; daily work in newborn units in Kenya: a qualitative study. BMC Public Health. 2025;25(1).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMiller JJ, Serwint JR, Boss RD. Clinician\u0026ndash;family relationships may impact neonatal intensive care: clinicians\u0026rsquo; perspectives. J Perinatol. 2021;41(9):2208\u0026ndash;16.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eProvenzi L, Barello S, Graffigna G. Caregiver Engagement in the Neonatal Intensive Care Unit: Parental Needs, Engagement Milestones, and Action Priorities for Neonatal Healthcare of Preterm Infants. 2015.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAljawad B, Miraj SA, Alameri F, Alzayer H. Family-centered care in neonatal and pediatric critical care units: a scoping review of interventions, barriers, and facilitators. BMC Pediatr. 2025;25(1).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBanda Z, Simbota M, Mula C. Nurses\u0026rsquo; perceptions on the effects of high nursing workload on patient care in an intensive care unit of a referral hospital in Malawi: a qualitative study. BMC Nurs. 2022;21(1).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBradley S, Kamwendo F, Chipeta E, Chimwaza W, de Pinho H, McAuliffe E. Too few staff, too many patients: A qualitative study of the impact on obstetric care providers and on quality of care in Malawi. BMC Pregnancy Childbirth. 2015;15(1).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGodarzi Z, Rahimi O, Khalesi N, Soleimani F, Mohammadi N, Shamshiri AR. Nurses\u0026rsquo; Opinions on the Barriers to Effective Implementation of Developmental Care in Neonatal Intensive Care Units. Crit Care Nurs. 2018;11(2).\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTable 1 is available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"
[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Cerebral palsy, Early identification, Early intervention, General movement assessment, Malawi","lastPublishedDoi":"10.21203/rs.3.rs-8536627/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8536627/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Early identification of infants at risk of neurodevelopmental disability is increasingly becoming possible, through the use of novel early identification tools. In this study, we sought to explore the views of healthcare workers and caregivers on their experiences in the Neonatal Intensive Care Unit around the time of early diagnosis using the General Movement Assessment to understand the best ways to implement the tool.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods. \u003c/strong\u003eWe conveniently sampled 15 caregivers with infants at high risk of CP as well as ten health care workers from a tertiary hospital in Blantyre, Malawi. We conducted in-depth interviews using a translated and piloted topic guide in Chichewa (caregivers) and English (health workers), audio-recorded and transcribed verbatim. Transcripts were then inductively coded and placed within themes aimed at understanding barriers and facilitators to implementation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e. Major themes identified from caregiver interviews included: spirituality as a source of strength and acceptance, the power of social support, fragile trust in healthcare workers' provider systems, economic strain during admission, gaps and strengths in health education and communication, and limited awareness of CP and its causes. Healthcare workers' themes included: limited awareness of early identification tools for CP, uncertainty and hierarchy in providing CP diagnosis, informal and inconsistent referral process, low familiarity and mixed perception about the GMA and teamwork as a coping mechanism amid resource constraints.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion. \u003c/strong\u003eImplementing GMA in Malawi requires a trusting environment between caregivers and healthcare workers, a better understanding of the importance of early identification tools and strengthening capacity within neonatal units. Furthermore, parents need to receive clear, accessible information to support their willingness to participate and improve their experience with early CP screening.\u003c/p\u003e","manuscriptTitle":"The feasibility of implementing the General Movement Assessment tool in the Neonatal Intensive Care Unit of a Tertiary Hospital in Malawi: A qualitative study of caregivers and healthcare workers’ experiences.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-02-09 13:27:37","doi":"10.21203/rs.3.rs-8536627/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-03-12T10:44:40+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-23T23:48:07+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-22T13:47:39+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"39375760150205822485530237643863851677","date":"2026-02-22T13:19:18+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-18T21:37:25+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-15T10:31:31+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-14T11:09:59+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"246210297056145174800017721920788303110","date":"2026-02-13T10:27:09+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"201213370348083028380775324319474628472","date":"2026-02-10T21:48:52+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"149148318022232218411402250493745018631","date":"2026-02-07T21:22:25+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"35024894657196153393299923928668600039","date":"2026-02-06T18:31:26+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"338609135154309096811080570323760821611","date":"2026-02-06T13:51:03+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-02-05T11:31:24+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-01-12T08:28:10+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-10T02:39:29+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-01-10T02:38:02+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pediatrics","date":"2026-01-07T04:15:36+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
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