Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
Abstract
:1. Introduction
2. Materials and Methods
2.1. Development of the Clinical Scenarios
2.2. Survey Administration
2.3. Statistical Analysis
2.4. Ethics
3. Results
3.1. Population Characteristics
3.2. Severity Rating
3.3. Classification of Scenario as a Severe Health Condition
3.4. Comparison of Respondent Characteristics
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
Appendix A. Clinical Scenarios
SCENARIO 1 (Cerebral palsy) Jamie is an 18-month-old child. He can sit with support and roll and creep on his stomach. He has stiff legs and will very likely use a wheelchair for longer distances at school. He can see and hear normally. He learns like other children his age and likes to play with other children. He can follow simple directions and use words like other children his age. |
SCENARIO 2 (Motor impairment) Riley is an 18-month-old child. She was slower at learning how to roll and sit. She now walks like an 11- to 12-month-old instead of an 18-month-old child. She will take three steps by herself but is unsteady and falls often. She can hold a crayon but is not able to scribble. She can see and hear normally. She is learning to play with toys like other children her age and likes to play with other children. She can follow simple directions and use words like other children her age. |
SCENARIO 3 (Cognitive impairment) Max is an 18-month-old child. He likes to play with toys for younger children (10–12 months). He takes more time to learn new skills and needs more help doing so, compared to other children his age. He can see and hear normally. He walks, runs, and moves like other children his age. He can follow simple directions and use words like other children his age. |
SCENARIO 4 (Language impairment) Lina is an 18-month-old child. She says ‘mama’ and ‘dada’ and one other word, which is less than expected for her age. She does not point to her ears and eyes when asked. She does not use words to make her wants known but cries or grabs you instead. She can see and hear normally. She walks, runs, and moves like other children her age. She learns, plays, and explores the environment like other children her age. |
SCENARIO 5 (Visual impairment) Alex is an 18-month-old child. He is blind in both eyes but can see light and shadows with poor clarity. He can hear normally. He can walk at home but needs help to find his way and be safe outside, since he cannot see well. He is curious and plays and learns like other children his age except where good vision is needed. He can follow simple verbal directions and use words like other children his age. |
SCENARIO 6 (Hearing impairment) Emilia is an 18-month-old child. With a hearing aid, she hears well but has difficulty in noisy environments. Without the hearing aid, she cannot understand regular speech. She can see normally. She learns, plays, and explores the environment like other children her age, but with the use of a hearing aid. With a hearing aid and regular speech therapy, she can follow simple directions and use words like other children her age. She walks, runs, and moves like other children her age. |
SCENARIO 7 (Motor and language impairment) Ali is an 18-month-old child. He was slower at learning how to roll and sit. He now walks like an 11- to 12-month-old instead of an 18-month-old child. He will take three steps by himself but is unsteady and falls often. He can hold a crayon but is not able to scribble. He says ‘mama’ and ‘dada’ and one other word, which is less than expected for his age. He does not point to his ears and eyes when asked. He does not use words to make his wants known but cries or grabs you instead. He can see and hear normally. He is learning to play with toys like other children his age and likes to play with other children. |
SCENARIO 8 (Cognitive and language impairment) Gracie is an 18-month-old child. She likes to play with toys for younger children (10–12 months). She takes more time to learn new skills and needs more help doing so, compared to other children her age. She says ‘mama’ and ‘dada’ and one other word, which is less than expected for her age. She does not point to her ears and eyes when asked. She does not use words to make her wants known but cries or grabs you instead. She can see and hear normally. She walks, runs, and moves like other children her age. |
SCENARIO 9 (Motor and cognitive impairment) Lee is an 18-month-old child. He was slower at learning how to roll and sit. He now walks like an 11- to 12-month-old instead of an 18-month-old child. He will take three steps by himself but is unsteady and falls often. He can hold a crayon but is not able to scribble. He likes to play with toys for younger children (10–12 months). He takes more time to learn new skills and needs more help doing so, compared to other children his age. He can see and hear normally. He can follow simple directions and use words like other children his age. |
SCENARIO 10 (Cerebral palsy and language impairment) Bailey is an 18-month-old child. She can sit with support and roll and creep on her stomach. She has stiff legs and will very likely use a wheelchair for longer distances at school. She says ‘mama’ and ‘dada’ and one other word, which is less than expected for her age. She does not point to her ears and eyes when asked. She does not use words to make her wants known but cries or grabs you instead. She can see and hear normally. She learns like other children her age and likes to play with other children. |
SCENARIO 11 (Typically developing child) Tasha is an 18-month-old child. She can see and hear normally. She walks, runs, and moves like other children her age. She learns, plays, and explores the environment like other children her age. She can follow simple directions and use words like other children her age. |
Questions: If 0 is the worst possible health and 10 is the best possible health, where do you think __ fits on the scale? _0 _1 _2 _3 _4 _5 _6 _7 _8 _9 _10 Does __’s case describe a severe health condition? _Y _N (repeat for all scenarios) |
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Characteristic | N (%) (N = 827) | |
---|---|---|
Language of Questionnaire | English | 354 (43%) |
French | 473 (57%) | |
Personal or Professional Description | Parent/caregiver or family of a child born preterm | 471 (57%) |
Person born preterm | 21 (3%) | |
Healthcare professional | 228 (28%) | |
Teacher/educator | 14 (2%) | |
Student/trainee | 5 (1%) | |
Researcher | 14 (2%) | |
Other | 9 (1%) | |
Country of Residence (international survey only) | United States | 54 (6.5%) |
United Kingdom | 26 (3.1%) | |
France | 181 (21.9%) | |
Other | 62 (7.5%) |
Scenario | Mean Differences (95% CI) | p Value |
---|---|---|
No impairment | −0.06 (−0.3, 0.17) | 0.60 |
Cerebral palsy | −0.23 (−0.61, 0.16) | 0.25 |
Motor | −0.04 (−0.32, 0.25) | 0.81 |
Cognitive | 0.25 (−0.09, 0.59) | 0.16 |
Language | 0.14 (−0.2, 0.48) | 0.41 |
Visual impairment | 0.03 (−0.36, 0.41) | 0.89 |
Hearing impairment | −0.22 (−0.46, 0.2) | 0.07 |
Motor and language | 0 (−0.34, 0.33) | 0.99 |
Language and cognitive | 0.24 (−0.08, 0.55) | 0.14 |
Motor and cognitive | −0.03 (−0.34, 0.28) | 0.83 |
Cerebral palsy and language | −0.36 (−0.66, −0.05) | 0.02 |
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Synnes, A.; Chera, A.; Richter, L.L.; Bone, J.N.; Bourque, C.J.; Zhang-Jiang, S.; Pearce, R.; Janvier, A.; Luu, T.M. Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders. Children 2023, 10, 880. https://doi.org/10.3390/children10050880
Synnes A, Chera A, Richter LL, Bone JN, Bourque CJ, Zhang-Jiang S, Pearce R, Janvier A, Luu TM. Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders. Children. 2023; 10(5):880. https://doi.org/10.3390/children10050880
Chicago/Turabian StyleSynnes, Anne, Amarpreet Chera, Lindsay L. Richter, Jeffrey N. Bone, Claude Julie Bourque, Sofia Zhang-Jiang, Rebecca Pearce, Annie Janvier, and Thuy Mai Luu. 2023. "Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders" Children 10, no. 5: 880. https://doi.org/10.3390/children10050880
APA StyleSynnes, A., Chera, A., Richter, L. L., Bone, J. N., Bourque, C. J., Zhang-Jiang, S., Pearce, R., Janvier, A., & Luu, T. M. (2023). Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders. Children, 10(5), 880. https://doi.org/10.3390/children10050880