{
  "abstract": "Background: Improving infant neurodevelopment and nutrition globally depends on generating research applicable to low- and middle-income countries LMICs. However, limited understanding exists on why families disengage from research participation, introducing selection bias and limiting policy relevance. The Mini_ND study in Malawi explored health system capacity, service delivery, and social factors shaping research participation among mothers of preterm/low-birth weight LBW infants.\n\nMethods: We conducted a mixed-methods analysis of recruitment and follow-up within the Mini_ND longitudinal neonatal cohort embedded in routine neonatal care (August 2025–May 2026). Recruitment and attrition patterns were analysed descriptively, with attrition explored through participant follow-up phone calls. Field notes and follow-up data were analysed thematically to identify caregiver experiences and barriers.\n\nResults: Recruitment was low 32% with attrition 6.3%. Health system barriers: prolonged neonatal intensive care stays, limited infrastructure, staff shortages, and competing workloads reduced research capacity. Social factors were prominent; mothers described post-partum psychological distress with limited mental health support, affecting engagement. Community stigma surrounding preterm/LBW infants contributed to maternal–infant dissociation and reduced motivation. Decision-making was often constrained, with reliance on absent partners or guardians. Structural barriers including transport costs, competing responsibilities, and political instability further undermined participation.\n\nConclusions: Recruitment challenges were not solely methodological but driven by interconnected health system, social, and structural factors. Strategies trialled in Mini_ND included community sensitisation, peer networks, family involvement, and empowering mothers. Addressing these barriers is essential to ensure equitable health service delivery and inclusive, representative research design in LMICs.\n\nKey messages: • Social and psychological barriers in neonatal research are under recognised and can significantly reduce research participation in LMICs. Urgent need to highlight real-world system aware study design.\n\n• Increasing understanding on equitable neonatal research practices and leveraging culturally sensitive strategies to result in generalisable robust data that will drive public health policy.",
  "abstract_shown": true,
  "affiliations": [],
  "article_type": "abstract",
  "arxiv": null,
  "author_total": 7,
  "authors": [
    {
      "name": "S Kattera"
    },
    {
      "name": "B Chikaonda"
    },
    {
      "name": "T Ngwenya"
    },
    {
      "name": "K Maleta"
    },
    {
      "name": "K Kawaza"
    },
    {
      "name": "M Gladstone"
    },
    {
      "name": "T Smith"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/1331ejxqqg4b0.bib",
  "cited_by": 0,
  "doi": "10.1093/eurpub/ckag169.1519",
  "fulltext_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13699428/",
  "id": "1331ejxqqg4b0",
  "issns": [
    "1101-1262",
    "1464-360X"
  ],
  "landing_url": "https://doi.org/10.1093/eurpub/ckag169.1519",
  "language": "en",
  "licence": "CC-BY-NC-4.0",
  "licence_label": "CC BY-NC 4.0",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by-nc/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "heading",
      "6. Poster Displays"
    ],
    [
      "heading",
      "AcademicSubjects/MED00860"
    ],
    [
      "heading",
      "AcademicSubjects/SOC01210"
    ],
    [
      "heading",
      "AcademicSubjects/SOC02610"
    ],
    [
      "heading",
      "DM. Health services and systems research"
    ],
    [
      "openalex",
      "2739|Ethics in Clinical Research"
    ]
  ],
  "openalex": "W7223687336",
  "pdf_url": "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13699428/pdf/?tool=EBI",
  "pmcid": "PMC13699428",
  "pmid": null,
  "published": "2026-10-01",
  "publisher": "Oxford University Press",
  "ris": "https://research.draconitic.com/paper/1331ejxqqg4b0.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:20:02Z",
      "native_id": "PMC13699428",
      "source": "pmc",
      "url": "https://doi.org/10.1093/eurpub/ckag169.1519"
    },
    {
      "first_seen": "2026-10-30T12:21:44Z",
      "native_id": "PMC:PMC13699428",
      "source": "europepmc",
      "url": "https://europepmc.org/article/PMC/PMC13699428"
    }
  ],
  "subjects": [
    {
      "field": "medicine",
      "origin": "openalex:2739|Ethics in Clinical Research",
      "subfield": "epidemiology-public-health"
    }
  ],
  "title": "Determinants of neonatal research participation in LMICs: implications for health systems",
  "title_text": "Determinants of neonatal research participation in LMICs: implications for health systems",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:36:00Z",
  "url": "https://research.draconitic.com/paper/1331ejxqqg4b0",
  "venue": "The European Journal of Public Health",
  "versions": []
}