Parent preferences for neurodevelopmental screening in the neonatal intensive care unit

Abstract

Aim To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. Method This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi‐structured interviews. Data were analysed using a directed content analysis approach. Results Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant’s illness ‘day by day’ and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. Interpretation Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation. What this paper adds Most parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation.

Usability and inter-rater reliability of the NeuroMotion app: A tool in General Movements Assessments

“…Parents' filming experiences at home and being part of the assessment are important. Our findings of high parental satisfaction are consistent with a previous study (24) investigating parents' perspectives on taking part in early neurodevelopmental screening. Opinions varied on whether the filming with the NeuroMotion™ app increased the parents' awareness about their babies' development.…”

“…Parents´ participation in early screening may increase their awareness of their infant´s risk for neurodevelopmental disability, prepare them emotionally and motivate them to early interventions. (24) Our results indicate that a minority of parents would have preferred visits from health care personnel instead of filming their infant with an app. Using the NeuroMotion™ and Baby Moves app resulted in a minority of the parents feeling worried about their baby's development.…”

Parental and professional opinion regarding outcome after neonatal stroke

“…Improving family-centred care will promote parental autonomy and the therapeutic alliance between families and professionals. 1,[3][4][5]…”

“…This allows for both familial and professional complementary perspectives, giving a more global view of the child's developmental trajectory. We were particularly interested how this was explored in the recent study by Dorner et al 1 With audio‐recorded interviews and a directed content analysis design, the authors analysed how parents want to receive early developmental information about their child's outcome after a neonatal event. This process can also highlight definitional differences of what assessment and outcome are.…”

“…Eventually, parental opinion determines their attitude towards rehabilitation. Improving family‐centred care will promote parental autonomy and the therapeutic alliance between families and professionals 1,3–5 …”