More than words: Parent, Patient and Public Involvement perspectives on language used by clinical researchers in neonatal care

Moss, Becky; Lammons, William; Johnson, Samantha; Ribas, Ricardo; Uthaya, Sabita; Battersby, Cheryl; Cornelius, Victoria; Babalis, Daphne; Modi, Neena

doi:10.1016/j.earlhumdev.2022.105611

Cited by 3 publications

(2 citation statements)

References 14 publications

(16 reference statements)

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“…We developed the study in collaboration with parents; the British Association of Perinatal Medicine; British Association of Neonatal Neurodevelopmental Follow-Up; Bliss, the national charity for babies born preterm or sick; and clinicians from north-west London neonatal units. We held three focus groups to engage and involve parents (five women and one man) and obtain their views during the design of the study 18…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Pilot feasibility study of a digital technology approach to the systematic electronic capture of parent-reported data on cognitive and language development in children aged 2 years

Modi,

Ribas,

Johnson

et al. 2023

BMJ Health Care Inform

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BackgroundThe assessment of language and cognition in children at risk of impaired neurodevelopment following neonatal care is a UK standard of care but there is no national, systematic approach for obtaining these data. To overcome these challenges, we developed and evaluated a digital version of a validated parent questionnaire to assess cognitive and language development at age 2 years, the Parent Report of Children’s Abilities-Revised (PARCA-R).MethodsWe involved clinicians and parents of babies born very preterm who received care in north-west London neonatal units. We developed a digital version of the PARCA-R questionnaire using standard software. Following informed consent, parents received automated notifications and an invitation to complete the questionnaire on a mobile phone, tablet or computer when their child approached the appropriate age window. Parents could save and print a copy of the results. We evaluated ease of use, parent acceptability, consent for data sharing through integration into a research database and making results available to the clinical team.ResultsClinical staff approached the parents of 41 infants; 38 completed the e-registration form and 30 signed the e-consent. The digital version of the PARCA-R was completed by the parents of 21 of 23 children who reached the appropriate age window. Clinicians and parents found the system easy to use. Only one parent declined permission to integrate data into the National Neonatal Research Database for approved secondary purposes.DiscussionThis electronic data collection system and associated automated processes enabled efficient systematic capture of data on language and cognitive development in high-risk children, suitable for national delivery at scale.

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Section: Methodsmentioning

confidence: 99%

“…We held three focus groups to engage and involve parents (five women and one man) and obtain their views during the design of the study. 18 …”

Section: Methodsmentioning

confidence: 99%