Parental and professional opinion regarding outcome after neonatal stroke.

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EDITOR—Going beyond quantitative measurement, the qualitative exploration of parental perception is increasingly being considered. 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. In line with this concept, we compared parental and professional opinions about outcome in a cohort of children with neonatal arterial ischemic stroke (NAIS; see Fig. S1, online supporting information). In a comprehensive cross-sectional assessment of 69 children with NAIS at age 7 years (AVCnn cohort; NCT02511249), parental opinion was explored with a closed-ended question: ‘Do you think that your child currently has sequelae of her/his NAIS?’2 The parental Conners Comprehensive Behavior Rating scale was also used. Professional opinion was determined according to face-to-face interviews, standardized medical examination, and validated speech and neuropsychological assessments.2 The presence of impaired speech, cerebral palsy (CP), low academic skills, active epilepsy, or global intellectual deficiency was used to define sequelae. Although parental and professional opinions were mostly similar (48/69; 70%), they were discordant in 20/69 cases (29%); i.e. moderate strength of agreement (κ=0.42). In one family, the parents disagreed and the child was considered by professionals to have sequelae (low academic skills and speech impairment). For six children, parents considered that their child had sequelae, but professionals did not. These children had features not captured by the aforementioned predefined medical criteria used to define sequelae: (1) abnormal parental Conners Comprehensive Behavior Rating scale (n=3); (2) strabismus related to occipital infarct (n=2); (3) remote epilepsy (seizure-free without treatment for 5y; n=1); and (4) minor motor deficiency not classified as CP (n=1). For 14 children, the parents estimated that their child had no sequelae, but professionals gave a different opinion. Thirteen children had speech impairment, three had CP, and three had low academic skills (Fig. S1). Our findings highlight that familial and professional views of NAIS outcome most often overlap, but in some situations there may be some discrepancies. Parents and professionals may consider the threshold level for sequelae differently, especially as regards behavioural features and emotional experiences, e.g. in relation to (even past) seizures. Conversely, some professional assessments (our speech test has a high sensitivity) may reveal disturbances that do not appear in daily life. More broadly, our results reveal that parents and professionals do not similarly weigh post-early brain injury consequences. It was already known that professionals prioritize functional goals (the first step of the International Classification of Functioning, Disability and Health [ICF] biopsychosocial framework of health) to manage their therapeutic decision.3 This is what we implicitly did over 10 years ago when defining our assessment criteria. It should also be noted that even if we were interested in participation (the highest ICF step) by assessing schooling, we quoted it as a functional area: success versus failure. In contrast, families (notably children) favour activity and participation in their goal-setting process.3 Furthermore, environmental and personal determinants of sequelae also include social and psychological factors, family functioning and way of life, previous experience with disability, and health policies. These factors affect how parents cope with the traumatic experience of NAIS and the uncertainty about their child's future.4 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 The AVCnn study was funded by Ministère de la santé et des solidarités, CHU Saint-Étienne; Fondation paralysie cérébrale; Fondation Garches; Association des paralysés de France; and Fondation de France. The authors have no interests which might be perceived as posing a conflict or bias. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.