Development & validation of parent-completed screening checklist for early movement abnormalities indicating high risk development of cerebral palsy.
Lead Research Organisation:
Newcastle University
Department Name: Institute of Neuroscience
Abstract
The project aims to develop and validate a parent-completed screening checklist for early movement abnormalities indicating a high risk of development of Cerebral Palsy. The project will review observational studies and assessments describing features of typical and pathological development in infants in the first 6 months of life and develop a screening checklist using qualitative design methods. The development will be framed for use by parents and with their input and feedback. Content validity will be assessed by healthcare professionals and parents. The reliability and validity of the screening checklist will be assessed in 30 infants at high risk of CP and 60 typically developing infants and their parents against standardised motor assessments and motor outcomes at one year of age. The relationship between checklist scores and parental mental health will be explored.
Organisations
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P000762/1 | 01/10/2017 | 30/09/2027 | |||
| 1887896 | Studentship | ES/P000762/1 | 01/10/2017 | 31/01/2022 | Jessica Baggaley |
| Description | Parents of infants who have undiagnosed Cerebral Palsy report the same concerns as the signs of Cerebral Palsy reported by specialists. Infants who are initially identified as having movement problems in primary care experience a significant delay in referral for treatment and diagnosis compared to infants identified in secondary care. The earlier parents raise concerns to primary health care professionals the less likely their infant will receive an immediate referral to secondary care for treatment and diagnosis. No currently available screening tool for emerging movement problems (0-6 months of age) included parents in the decisions on what items (questions) to include. The majority of currently available screening tools for emerging movement problems developed their content from the literature. Differences in the language used occurs between screening tools aimed for use by health care professionals and by parents. Tools aimed at parents tend to use lay language whereas tools aimed at health care professionals currently use medical terminology. Although the currently available screening tools aimed at parents use lay language, the content of the tools does not cover the entire spectrum of concerns parents raise when their infants have undiagnosed Cerebral Palsy. |
| Exploitation Route | Currently, there is another stage of the project that needs to be completed, relating to the development of a screening tool from the parent concerns identified earlier in the PhD. At the moment the PhD has raised questions as to 1) why are parental concerns are being missed within primary care. 2) Why does the infants' age at which parents report their concerns influence the immediateness of the referral. 3) How often do primary health care professionals hear parental concerns that do not require referral. Answering these questions would be very useful in understanding if these cases are just an odd few bad experiences within a much larger good primary care clinical practice. Further research needs to be carried out into the citation pathways of the screening tools. Due to covid I have only been able to trace 1 level of citations. Even within this one level, cross-referencing between the tools have occurred. This suggests that the current screening tools are based on the same original data. Further research into this area would highlight which tools are original and why so many tools have been created. |
| Sectors | Healthcare |
| Description | early recognition of infants at risk of CP - the Red Book project |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Internal oral presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Oral presentation at the IHS postgraduate conference at Newcastle University. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Online poster presentation at RCPCH |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Online poster presentation about the earliest concerns parents has of their child development when their child has undiagnosed Cerebral Palsy. The poster was presented online for several months. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Online poster presentation at the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | This was a poster presented at an international e-conference on Exploration of Delays in referrals to Secondary care of infants with suspected Cerebral Palsy. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Oral presentation at the European Academy of Childhood Disability Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | An online oral presentation was given at an international conference. The talk was around the earliest concerns parents have of their infants' development when their infant has undiagnosed Cerebral Palsy and the frequency in which these concerns occur between infants who receive immediate referral or delayed referral from primary care practitioners. Due to the conferencing being online there was no opportunity for networking. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Poster presentation at North East Postgraduate Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | A poster presentation on the primary care pathways to referral that parents of children with undiagnosed Cerebral Palsy experience. The poster received multiple questions and I was awarded the 1st place poster prize. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Poster presentation at the European Academy of Childhood Disability Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Poster presentation in person and online on Which motor screening tools for infants aged 0-6 months included parents in their development process? A scoping review. This is to take place in May 2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Poster presentation at the European Academy of Childhood Disability Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Online and in-person poster presentation on 'Navigating the ocean alone in a reed boat with no map.' Parental experiences of accessing primary care referral for their infants with Cerebral Palsy. This is to take place in May 2022 |
| Year(s) Of Engagement Activity | 2022 |