Acceptability and feasibility of a community-hospital parenting support and prevention programme for families of infants at high neurodevelopmental risk following neonatal encephalopathy: protocol of the PRePaR (PRevention and support for Parenthood in early Rehabilitation) mixed-methods study

针对新生儿脑病后神经发育高风险婴儿家庭的社区医院育儿支持和预防项目的可接受性和可行性:PRePaR(早期康复中育儿预防和支持)混合方法研究方案

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Abstract

INTRODUCTION: Neonatal encephalopathy, particularly situations involving neonatal hypoxic-ischaemic encephalopathy (NHIE) and neonatal stroke (NS), covers complex neonatal conditions associated with a risk of neurodevelopmental difficulties. Early prevention programmes have shown benefits for neurodevelopment, but few address both NHIE and NS populations. Following an initial joint development phase with families and professionals, we identified two areas of intervention: (1) Making infant care and referral more streamlined and (2) Increasing parent empowerment. The PRevention and support for Parenthood in an early Rehabilitation programme is a multidisciplinary intervention initiated in the neonatal intensive care unit and continuing at home until the infant reaches a corrected age of 4 months. Its objectives are to: (1) Ensure that the family environment is adapted to the child's needs, (2) Introduce parents to digital support suggesting information on the care pathway and developmental interventions, (3) Maintain continuity of care and (4) Maximise early detection by sharing videos for analysis of the child's movements. METHOD AND ANALYSIS: This longitudinal study uses a mixed-methods approach to assess the acceptability and feasibility of the early parenthood support programme involving parents and healthcare professionals. The qualitative research will be carried out through focus groups (parents and professionals) held at the end of the intervention programme. The corpus of semidirected collective interviews (focus group) will be processed by thematic content analysis. Initial coding and analysis will be conducted by the sociologist with expertise in qualitative methods, and the emerging themes and interpretations will then be discussed, refined and validated through interdisciplinary analysis meetings involving the broader research team. This collective analytical process will allow for deeper engagement with the data and ensure that interpretations are challenged and enriched by multiple professional perspectives. The quantitative research will rely on self-administered questionnaires (parents and professionals), assessment of child neurodevelopment using standardised tools by physiotherapists and assessment of parental skills using standardised observation grids. ETHICS AND DISSEMINATION: This study has full approval from an independent ethics committee (CPP Ile de France I). Its findings will be published in peer-reviewed journals and conference presentations. The trial was registered on Clinicaltrials.gov (NCT05457569).

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