Consumer involvement in research – parent perceptions of partnership in cerebral palsy research : A qualitative study

Journal article

Headrick, Katie, Thornton, Marelle, Hogan, Amy, Deramore Denver, Belinda Jane, Drake, Gabrielle and Wallen, Margaret. (2023). Consumer involvement in research – parent perceptions of partnership in cerebral palsy research : A qualitative study. Disability and Rehabilitation. 45(3), pp. 483-493. https://doi.org/10.1080/09638288.2022.2034992
AuthorsHeadrick, Katie, Thornton, Marelle, Hogan, Amy, Deramore Denver, Belinda Jane, Drake, Gabrielle and Wallen, Margaret
Abstract

Purpose
Identify perceptions of parents and caregivers of children with cerebral palsy about being consumer research partners and identify strategies to inform involvement of parents in cerebral palsy research.

Materials and methods
Twenty-two parents in New South Wales and Victoria (Australia) participated in this qualitative study. Seven interviews and three focus groups were completed. Interpretive description guided data analysis. Methodological rigor was enhanced through involving two consumer investigators in the research team, member checking, and multiple researchers completing data analysis and theme generation.

Results
Participants identified a range of factors that may influence their involvement in research partner roles. Main topics emerging from the data included “Research Is Better with Parents” and “Parents Benefit from Being Research Partners.” A third, “Parents as Research Partners,” contained the themes “Flexible Involvement,” “Starting Partnerships,” and “Building and Sustaining Partnerships.”

Conclusion
This study has provided a rich insight into how parents perceive and describe engaging as research partners. Parent-identified guidance will inform future partnerships aiming to enhance the quality of cerebral palsy research and outcomes for people with cerebral palsy and their families. The involvement of consumer investigators in this study was considered valuable for enhancing the quality and applicability of the research.

IMPLICATIONS FOR REHABILITATION
Parents believed that parent partnership in research has benefits for the research and for the consumers involved.

Parents provided guidance about the importance of starting, building and sustaining relationships in involving parents as research partners.

Understanding the parent context, investing in relationships and acknowledgement of, and recognition for, contributions were considered important for building and sustaining effective partnerships.

Flexible approaches to supporting parents as research partners was considered necessary for effective partnership.

Keywordscerebral palsy; consumer involvement; patient and public involvement; co-researcher; research partner; parents
Year2023
JournalDisability and Rehabilitation
Journal citation45 (3), pp. 483-493
PublisherTaylor & Francis
ISSN0963-8288
Digital Object Identifier (DOI)https://doi.org/10.1080/09638288.2022.2034992
PubMed ID35133223
Scopus EID2-s2.0-85124914195
Page range483-493
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online08 Feb 2022
Publication process dates
Accepted21 Jan 2022
Deposited31 Oct 2023
Permalink -

https://acuresearchbank.acu.edu.au/item/8zxwz/consumer-involvement-in-research-parent-perceptions-of-partnership-in-cerebral-palsy-research-a-qualitative-study

Log in to edit

Restricted files

Publisher's version

  • 54
    total views
  • 0
    total downloads
  • 3
    views this month
  • 0
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Including People Who Use Augmentative and Alternative Communication in Qualitative Research : Can You Hear Us?
Walsh, Megan, Harman, Isobel, Manning, Penny, Ponza, Brenton, Wong, Shirley, Shaw, Brodie, Sellwood, Darryl, Anderson, Kate, Reddihough, Dinah and Wallen, Margaret. (2024). Including People Who Use Augmentative and Alternative Communication in Qualitative Research : Can You Hear Us? International Journal of Qualitative Methods. 23, pp. 1-13. https://doi.org/10.1177/16094069241234190
Caregiver perspectives of scoliosis surgery for children with cerebral palsy : a qualitative study
Stewart, Kirsty, Price, Georgia, Kelderman, Jayne, Carman, Sarah, Imms, Christine and Wallen, Margaret. (2024). Caregiver perspectives of scoliosis surgery for children with cerebral palsy : a qualitative study. Disability and Rehabilitation. pp. 1-10. https://doi.org/10.1080/09638288.2024.2342501
Does exercise affect quality of life and participation of adolescents and adults with cerebral palsy : A systematic review
Czencz, James, Shields, Nora, Wallen, Margaret, Wilson, Peter H., McGuckian, Thomas B. and Imms, Christine. (2022). Does exercise affect quality of life and participation of adolescents and adults with cerebral palsy : A systematic review. Disability and Rehabilitation. pp. 1-17. https://doi.org/10.1080/09638288.2022.2148297
Implications of providing wrist-hand orthoses for children with cerebral palsy : Evidence from a randomised controlled trial
Imms, Christine, Wallen, Margaret, Elliott, Catherine, Hoare, Brian, Greaves, Susan, Randall, Melinda and Orsini, Francesca. (2022). Implications of providing wrist-hand orthoses for children with cerebral palsy : Evidence from a randomised controlled trial. Disability and Rehabilitation. 45(12), pp. 2046-2056. https://doi.org/10.1080/09638288.2022.2079734
Perspectives of children and adolescents with cerebral palsy about involvement as research partners : A qualitative study
Cavens, C., Imms, C., Drake, G., Garrity, N. and Wallen, M.. (2022). Perspectives of children and adolescents with cerebral palsy about involvement as research partners : A qualitative study. Disability and Rehabilitation. 44(16), pp. 4293-4302. https://doi.org/10.1080/09638288.2021.1900927
Measure of early vision use : Development of a new assessment tool for children with cerebral palsy
Deramore Denver, Belinda, Froude, Elspeth, Rosenbaum, Peter and Imms, Christine. (2022). Measure of early vision use : Development of a new assessment tool for children with cerebral palsy. Disability and Rehabilitation. 44(15), pp. 4055-4065. https://doi.org/10.1080/09638288.2021.1890241
Measure of early vision use : Initial validation with parents of children with cerebral palsy
Deramore Denver, Belinda, Froude, Elspeth, Rosenbaum, Peter and Imms, Christine. (2022). Measure of early vision use : Initial validation with parents of children with cerebral palsy. Disability and Rehabilitation. 44(15), pp. 4066-4074. https://doi.org/10.1080/09638288.2021.1890243
The Dyskinetic Cerebral Palsy Functional Impact Scale : Development and validation of a new tool
Stewart, Kirsty, Lewis, Jennifer, Wallen, Margaret, Bear, Natasha and Harvey, Adrienne. (2021). The Dyskinetic Cerebral Palsy Functional Impact Scale : Development and validation of a new tool. Developmental Medicine and Child Neurology. 63(12), pp. 1469-1475. https://doi.org/10.1111/dmcn.14960
Are boys and girls just different? Gender differences in the Movement Assessment Battery for Children, 2nd edition (M ABC-2) suggests that they are
Fairbairn, Natalie, Galea, Claire, Wallen, Margaret, Walker, Karen, Hodge, Antoinette, Badawi, Nadia and Loughran-Fowlds, Alison. (2020). Are boys and girls just different? Gender differences in the Movement Assessment Battery for Children, 2nd edition (M ABC-2) suggests that they are. Australian Occupational Therapy Journal. 67(3), pp. 229 - 236. https://doi.org/10.1111/1440-1630.12646
Brain magnetic resonance imaging is a predictor of bimanual performance and executive function in children with unilateral cerebral palsy
Crichton, Alison, Ditchfield, Michael, Gwini, Stellamay, Wallen, Margaret, Thorley, Megan, Bracken, Jenny, Harvey, Adrienne, Elliott, Catherine, Novak, Iona and Hoare, Brian. (2020). Brain magnetic resonance imaging is a predictor of bimanual performance and executive function in children with unilateral cerebral palsy. Developmental Medicine and Child Neurology. 62(5), pp. 615 - 624. https://doi.org/10.1111/dmcn.14462
The validity of early intervention for children with visual impairment
Deramore Denver, Belinda. (2019). The validity of early intervention for children with visual impairment. Developmental Medicine and Child Neurology. 61(6), p. 627. https://doi.org/10.1111/dmcn.14090
The Hand Assessment for Infants at risk for cerebral palsy
Margaret Wallen. (2019). The Hand Assessment for Infants at risk for cerebral palsy. Developmental Medicine and Child Neurology. 61(9), p. 999. https://doi.org/10.1111/dmcn.14183
Upper limb function of children with unilateral cerebral palsy after a magic-themed HABIT: A pre-post-study with 3- and 6-month follow-up
Hines, Ashleigh, Bundy, Anita C., Black, Deb, Haertsch, Maggie and Wallen, Margaret. (2019). Upper limb function of children with unilateral cerebral palsy after a magic-themed HABIT: A pre-post-study with 3- and 6-month follow-up. Physical & Occupational Therapy in Pediatrics. 39(4), pp. 404 - 419. https://doi.org/10.1080/01942638.2018.1505802
Eyes on communication: Trialling eye-gaze control technology in young children with dyskinetic cerebral palsy
Karlsson, Petra, Bech, Anna, Stone, Helen, Vale, Cecily, Griffin, Suzan, Monbaliu, Elegast and Wallen, Margaret. (2019). Eyes on communication: Trialling eye-gaze control technology in young children with dyskinetic cerebral palsy. Developmental Neurorehabilitation. 22(2), pp. 134 - 140. https://doi.org/10.1080/17518423.2018.1519609
A magic-themed upper limb intervention for children with unilateral cerebral palsy: The perspectives of parents
Hines, A., Bundy, A. C., Haertsch, M. and Wallen, M.. (2019). A magic-themed upper limb intervention for children with unilateral cerebral palsy: The perspectives of parents. Developmental Neurorehabilitation. 22(2), pp. 104 - 110. https://doi.org/10.1080/17518423.2018.1442372
Cognition and bimanual performance in children with unilateral cerebral palsy: Protocol for a multicentre, cross-sectional study
Hoare, Brian, Ditchfield, Michael, Thorley, Megan, Wallen, Margaret, Bracken, Jenny, Harvey, Adrienne, Elliott, Catherine, Novak, Iona and Crichton, Ali. (2018). Cognition and bimanual performance in children with unilateral cerebral palsy: Protocol for a multicentre, cross-sectional study. BMC Neurology. 18(1), pp. 1 - 12. https://doi.org/10.1186/s12883-018-1070-z
Parent perception of two eye-gaze control technology systems in young children with cerebral palsy: pilot study.
Karlsson, Petra and Wallen, Margaret. (2017). Parent perception of two eye-gaze control technology systems in young children with cerebral palsy: pilot study. In In P. Cudd and L. D. Witte (Ed.). Harnessing the Power of Technology to Improve Lives pp. 1095 - 1102 IOS Press BV. https://doi.org/10.3233/978-1-61499-798-6-1095
REACH: study protocol of a randomised trial of rehabilitation very early in congenital hemiplegia
Boyd, Roslyn N., Ziviani, Jenny, Sakzewski, Leanne, Novak, Iona, Badawi, Nadia, Pannek, Kerstin, Elliott, Catherine, Greaves, Susan, Guzzetta, Andrea, Whittingham, Koa, Valentine, Jane P., Morgan, Cathy, Wallen, Margaret, Eliasson, Ann-Christin, Findlay, Lisa, Ware, Robert S., Fiori, Simona and Rose, Stephen. (2017). REACH: study protocol of a randomised trial of rehabilitation very early in congenital hemiplegia. BMJ Open. 7(9), pp. 1 - 18. https://doi.org/10.1136/bmjopen-2017-017204
Comparison of the properties of the Handwriting Speed Test (HST) and Detailed Assessment of Speed of Handwriting (DASH): An exploratory study
Francis, Anna, Wallen, Margaret and Bundy, Anita. (2017). Comparison of the properties of the Handwriting Speed Test (HST) and Detailed Assessment of Speed of Handwriting (DASH): An exploratory study. Physical & Occupational Therapy in Pediatrics. 37(2), pp. 155 - 169. https://doi.org/10.1080/01942638.2016.1185499
Eye-gaze control technology for children, adolescents and adults with cerebral palsy with significant physical disability: findings from a systematic review
Karlsson, Petra, Allsop, Abigail, Dee-Price, Betty Jean and Wallen, Margaret. (2017). Eye-gaze control technology for children, adolescents and adults with cerebral palsy with significant physical disability: findings from a systematic review. Developmental Neurorehabilitation. https://doi.org/10.1080/17518423.2017.1362057
Minimising impariment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy
Imms, Christine, Wallen, Margaret, Elliott, Catherine, Hoare, Brian, Randall, Melinda Joy, Greaves, Susan, Adair, Brooke, Bradshaw, Elizabeth, Carter, Rob, Orsini, Francesca, Shih, Sophy T. F. and Reddihough, Dinah S.. (2016). Minimising impariment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy. BMC Pediatrics. 16(70), pp. 1 - 15. https://doi.org/10.1186/s12887-016-0608-8
Patient and public involvement (PPI) in research is perceived to benefit stroke survivors and the research process. Barriers and facilitators exist which can be addressed to enable PPI in stroke research
Wallen, Margaret. (2016). Patient and public involvement (PPI) in research is perceived to benefit stroke survivors and the research process. Barriers and facilitators exist which can be addressed to enable PPI in stroke research. Australian Occupational Therapy Journal. 63, pp. 218 - 220. https://doi.org/10.1111/1440-1630.12304
Grading and quantification of upper extremity function in children with spasticity
Wallen, Margaret and Stewart, Kirsty. (2016). Grading and quantification of upper extremity function in children with spasticity. Seminars in Plastic Surgery. 30(1), pp. 5 - 13. https://doi.org/10.1055/s-0035-1571257
Identifying and monitoring pain and sleep in children with cerebral palsy: Early findings from a surveillance program
Karlsson, Petra, Galea, C., Townsend, A. and Wallen, Margaret. (2016). Identifying and monitoring pain and sleep in children with cerebral palsy: Early findings from a surveillance program. Developmental Medicine and Child Neurology. 58(S5), pp. 95 - 95. https://doi.org/10.1111/dmcn.23_13225
The measurement of visual ability in children with cerebral palsy : A systematic review
Deramore Denver, Belinda, Froude, Elspeth, Rosenbaum, Peter, Wilkes-Gillan, Sarah and Imms, Christine. (2016). The measurement of visual ability in children with cerebral palsy : A systematic review. Developmental Medicine and Child Neurology. 58(10), pp. 1016-1029. https://doi.org/10.1111/dmcn.13139
Reflections on the contribution of the Assisting Hand Assessment
Wallen, Margaret. (2016). Reflections on the contribution of the Assisting Hand Assessment. Developmental Medicine and Child Neurology. 58(6), pp. 537 - 538. https://doi.org/10.1111/dmcn.12963
Minimising impairment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy
Imms, Christine, Wallen, Margaret, Elliott, Catherine M., Hoare, Brian, Randall, Melinda Joy, Greaves, Susan, Adair, Brooke, Bradshaw, Elizabeth Jane, Carter, Robert, Orsini, Francesca, Shih, Sophy T. F. and Reddihough, Dinah S.. (2016). Minimising impairment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy. BMC Pediatrics. 16(1), pp. 70 - 85. https://doi.org/10.1186/s12887-016-0608-8
Upper limb function in everyday life of children with cerebral palsy: Description and review of parent report measures
Wallen, Margaret and Stewart, Kirsty. (2015). Upper limb function in everyday life of children with cerebral palsy: Description and review of parent report measures. Disability and Rehabilitation. 37(15), pp. 1353 - 1361. https://doi.org/10.3109/09638288.2014.963704
No differences were observed between six months of context-versus child-focussed intervention for young children with cerebral palsy on self-care, mobility, range-of-motion or participation
Wallen, Margaret. (2014). No differences were observed between six months of context-versus child-focussed intervention for young children with cerebral palsy on self-care, mobility, range-of-motion or participation. Australian Occupational Therapy Journal. 61(2), pp. 126 - 127. https://doi.org/10.1111/1440-1630.12109
Caution regarding the Pediatric Motor Activity Log to measure upper limb intervention outcomes for children with unilateral cerebral palsy
Wallen, Margaret and Ziviani, Jenny. (2013). Caution regarding the Pediatric Motor Activity Log to measure upper limb intervention outcomes for children with unilateral cerebral palsy. Developmental Medicine and Child Neurology. 55(6), pp. 497 - 498. https://doi.org/10.1111/dmcn.12057
Weighted vests did not improve competing behaviours or joint attention of 2 year olds with Autism Spectrum Disorder (ASD)
Wallen, Margaret. (2012). Weighted vests did not improve competing behaviours or joint attention of 2 year olds with Autism Spectrum Disorder (ASD). Australian Occupational Therapy Journal. 59(6), pp. 468 - 470. https://doi.org/10.1111/1440-1630.12014
Effects of neoprene wrist/hand splints on handwriting for students with joint hypermobility syndrome: A single system design study
Frohlich, Lauren, Wesley, Alison, Wallen, Margaret and Bundy, Anita. (2012). Effects of neoprene wrist/hand splints on handwriting for students with joint hypermobility syndrome: A single system design study. Physical & Occupational Therapy in Pediatrics. 32(3), pp. 243 - 255. https://doi.org/10.3109/01942638.2011.622035
Validity of the fine motor area of the 12-month ages and stages questionnaire in infants following major surgery
Smith, Cally, Wallen, Margaret, Walker, Karen, Bundy, Anita, Rolinson, Rachel and Badawi, Nadia. (2012). Validity of the fine motor area of the 12-month ages and stages questionnaire in infants following major surgery. Physical & Occupational Therapy in Pediatrics. 32(3), pp. 260 - 271. https://doi.org/10.3109/01942638.2011.606261
Modified constraint-induced therapy for children with hemiplegic cerebral palsy: A randomized trial
Wallen, Margaret, Ziviani, Jenny, Naylor, Olivia, Evans, Ruth, Novak, Iona and Herbert, Robert D.. (2011). Modified constraint-induced therapy for children with hemiplegic cerebral palsy: A randomized trial. Developmental Medicine and Child Neurology. 53(12), pp. 1091 - 1099. https://doi.org/10.1111/j.1469-8749.2011.04086.x
Comparing the effectiveness of a parent group intervention with child-based intervention for promoting playfulness in children with disabilities
Bundy, Anita, Kolrosova, Jitka, Paguinto, Sarah-Grace, Bray, Paula, Swain, Belinda, Wallen, Margaret and Engelen, Lina. (2011). Comparing the effectiveness of a parent group intervention with child-based intervention for promoting playfulness in children with disabilities. Israeli Journal of Occupational therapy. 20(4), pp. e95 - e113.
Botulinum Toxin A as an Adjunct to Treatment in the Management of the Upper Limb in Children with Spastic Cerebral Palsy (UPDATE)
Hoare, Brian, Wallen, Margaret, Imms, Christine, Villanueva, Elmer, Rawicki, Hyam and Carey, Leeanne. (2010). Botulinum Toxin A as an Adjunct to Treatment in the Management of the Upper Limb in Children with Spastic Cerebral Palsy (UPDATE). Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD003469.pub4
Modified constraint induced therapy for young children
Wallen, Margaret and Imms, Christine. (2010). Modified constraint induced therapy for young children. In In Dodd, Karen J., Imms, Christine and Taylor, Nicholas F. (Ed.). Physiotherapy and occupational therapy for people with cerebral palsy : A problem-based approach to assessment and management pp. 114-129 Mac Keith Press.
Therapeutic practice resulted in moderate improvement in handwriting ability for children with poor handwriting when compared with sensorimotor intervention, but not when compared with a control group
Wallen, Margaret and Froude, Elspeth. (2007). Therapeutic practice resulted in moderate improvement in handwriting ability for children with poor handwriting when compared with sensorimotor intervention, but not when compared with a control group. Australian Occupational Therapy Journal. 54(3), pp. 239 - 244.
Editorial: Critically Appraised Papers Related to Children with Autism
Wallen, Margaret and Imms, Christine. (2006). Editorial: Critically Appraised Papers Related to Children with Autism. Australian Occupational Therapy Journal. 53(3), pp. 237 - 238.
Searching for Evidence in Pediatric Occupational Therapy Using Free versus Subscription Databases: A Comparison of Outcomes
Lovarini, Meryl, Wallen, Margaret and Imms, Christine. (2006). Searching for Evidence in Pediatric Occupational Therapy Using Free versus Subscription Databases: A Comparison of Outcomes. Physical & Occupational Therapy in Pediatrics. 26(3), pp. 19 - 38. https://doi.org/10.1300/J006v26n03_03