Between Anxiety and Adaptation: Children’s and Parents’ Experiences with Botulinum Toxin Treatment in Cerebral Palsy
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participants and Recruitment
2.3. Clinical Setting
2.4. Ethical Considerations
2.5. Data Collection
2.6. Data Analysis
2.7. Interpretative Framework
3. Results
3.1. Study Participants
3.2. Themes
3.3. Prepearing for the Treatment
3.3.1. Between Fear and Familiarity
3.3.2. Navigating Information
3.4. Being in the Moment
3.4.1. Managing Pain
3.4.2. Experiencing the Injection
3.5. Adapting After Treatment
3.5.1. Regaining Stability
3.5.2. Coping Through Rewards
4. Discussion
4.1. Discussion in Light of CCC
4.2. Discussion in Light of Earlier Research
4.3. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Novak, I.; Morgan, C.; Fahey, M.; Finch-Edmondson, M.; Galea, C.; Hines, A.; Langdon, K.; Namara, M.M.; Paton, M.C.; Popat, H.; et al. State of the Evidence Traffic Lights 2019: Systematic Review of Interventions for Preventing and Treating Children with Cerebral Palsy. Curr. Neurol. Neurosci. Rep. 2020, 20, 3. [Google Scholar] [CrossRef] [PubMed]
- Hollung, S.J.; Hägglund, G.; Gaston, M.S.; Seid, A.K.; Lydersen, S.; Alriksson-Schmidt, A.I.; Andersen, G.L. Point prevalence and motor function of children and adolescents with cerebral palsy in Scandinavia and Scotland: A CP-North study. Dev. Med. Child Neurol. 2021, 63, 721–728. [Google Scholar] [CrossRef] [PubMed]
- Saether, R.; Helbostad, J.L.; Adde, L.; Brændvik, S.; Lydersen, S.; Vik, T. Gait characteristics in children and adolescents with cerebral palsy assessed with a trunk-worn accelerometer. Res. Dev. Disabil. 2014, 35, 1773–1781. [Google Scholar] [CrossRef]
- Nardon, M.; Ruzzante, F.; O’Donnell, L.; Adami, A.; Dayanidhi, S.; Bertucco, M. Energetics of walking in individuals with cerebral palsy and typical development, across severity and age: A systematic review and meta-analysis. Gait Posture 2021, 90, 388–407. [Google Scholar] [CrossRef]
- Puce, L.; Pallecchi, I.; Chamari, K.; Marinelli, L.; Innocenti, T.; Pedrini, R.; Mori, L.; Trompetto, C. Systematic Review of Fatigue in Individuals with Cerebral Palsy. Front. Hum. Neurosci. 2021, 15, 598800. [Google Scholar] [CrossRef]
- Maher, C.A.; Williams, M.T.; Olds, T.; Lane, A.E. Physical and sedentary activity in adolescents with cerebral palsy. Dev. Med. Child Neurol. 2007, 49, 450–457. [Google Scholar] [CrossRef]
- Hägglund, G.; Hollung, S.J.; Ahonen, M.; Andersen, G.L.; Eggertsdóttir, G.; Gaston, M.S.; Jahnsen, R.; Jeglinsky-Kankainen, I.; Nordbye-Nielsen, K.; Tresoldi, I.; et al. Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: A CP-North registry study. BMC Neurol. 2021, 21, 276. [Google Scholar] [CrossRef]
- Ross Raftemo, A.E.; Mahendran, A.; Hollung, S.J.; Jahnsen, R.B.; Lydersen, S.; Vik, T.; Andersen, G.L. Use of botulinum toxin A in children with cerebral palsy. Tidsskr. Nor. Laegeforen. 2019, 139. [Google Scholar] [CrossRef]
- Blumetti, F.C.; Belloti, J.C.; Tamaoki, M.J.; Pinto, J.A. Botulinum toxin type A in the treatment of lower limb spasticity in children with cerebral palsy. Cochrane Database Syst. Rev. 2019, 10, Cd001408. [Google Scholar] [CrossRef]
- Multani, I.; Manji, J.; Hastings-Ison, T.; Khot, A.; Graham, K. Botulinum Toxin in the Management of Children with Cerebral Palsy. Paediatr. Drugs 2019, 21, 261–281. [Google Scholar] [CrossRef]
- Nugud, A.; Alhoot, S.; Agabna, M.; Babiker, M.O.E.; El Bashir, H. Analgesia and sedation modalities used with botulinum toxin injections in children with cerebral palsy: A literature review. Sudan. J. Paediatr. 2021, 21, 6–12. [Google Scholar] [CrossRef] [PubMed]
- Moreira, E.; Rodrigues, M.; Beça, G. Pain Management Strategies for Botulinum Toxin Type A Injections in Children: A Comprehensive National Survey and Procedural Protocol. Cureus 2023, 15, e48311. [Google Scholar] [CrossRef] [PubMed]
- Sæther, R.; Elvrum, A.G.; Brændvik, S.M. Correspondence between Expected, Perceived, and Measured Effects of BoNT-A Treatment in Calf Muscles among Children and Adolescents with Cerebral Palsy: A Mixed Methods Study. J. Clin. Med. 2024, 13, 1453. [Google Scholar] [CrossRef] [PubMed]
- Karadag-Saygi, E.; Kenis-Coskun, Ö.; Unalan, P.C.; Evkaya-Acar, A.; Giray, E.; Akgulle, A.H. Pros and cons of botulinum toxin injection therapy in cerebral palsy: A qualitative study exploring caregivers’ perspective. Child Care Health Dev. 2022, 48, 150–158. [Google Scholar] [CrossRef]
- Lorin, K.; Forsberg, A. Treatment with botulinum toxin in children with cerebral palsy: A qualitative study of parents’ experiences. Child Care Health Dev. 2016, 42, 494–503. [Google Scholar] [CrossRef]
- Nguyen, L.; Di Rezze, B.; Mesterman, R.; Rosenbaum, P.; Gorter, J.W. Effects of Botulinum Toxin Treatment in Nonambulatory Children and Adolescents with Cerebral Palsy: Understanding Parents’ Perspectives. J. Child Neurol. 2018, 33, 724–733. [Google Scholar] [CrossRef]
- Almoajil, H.; Theologis, T.; Dawes, H.; Parsonage, J.; Pierce, J.; Hopewell, S.; Toye, F. Patients’ and parents’ views about lower limb orthopaedic surgery for ambulant children and young people with cerebral palsy: A qualitative evidence synthesis. J. Child Orthop. 2020, 14, 562–573. [Google Scholar] [CrossRef]
- Carter, B.; Young, S.; Ford, K.; Campbell, S. The Concept of Child-Centred Care in Healthcare: A Scoping Review. Pediatr. Rep. 2024, 16, 114–134. [Google Scholar] [CrossRef]
- Coyne, I.; Hallström, I.; Söderbäck, M. Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. J. Child Health Care Prof. Work. Child. Hosp. Community 2016, 20, 494–502. [Google Scholar] [CrossRef]
- Brændvik, S.M.; Roeleveld, K.; Andersen, G.L.; Raftemo, A.E.; Ramstad, K.; Majkic-Tajsic, J.; Lamvik, T.; Lund, B.; Follestad, T.; Vik, T. The WE-Study: Does botulinum toxin A make walking easier in children with cerebral palsy?: Study protocol for a randomized controlled trial. Trials 2017, 18, 58. [Google Scholar] [CrossRef]
- Brændvik, S.M.; Ross Raftemo, A.E.; Roeleveld, K.; Andersen, G.L.; Ramstad, K.; Follestad, T.; Aarli, Å.; Bonikowski, M.; Vik, T. Does botulinum neurotoxin A make walking easier in children with cerebral palsy? A randomized clinical trial. Dev. Med. Child Neurol. 2025, 67, 263–271. [Google Scholar] [CrossRef] [PubMed]
- Malterud, K.; Siersma, V.D.; Guassora, A.D. Sample Size in Qualitative Interview Studies: Guided by Information Power. Qual. Health Res. 2016, 26, 1753–1760. [Google Scholar] [CrossRef] [PubMed]
- Braun, V.; Clarke, V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006, 3, 77–101. [Google Scholar] [CrossRef]
Interview Questions |
---|
Knowledge about BoNT-A treatment |
Can you describe what you know about Botox treatment? |
What information did you receive beforehand? |
How does the treatment work, and what is its purpose? |
How is the procedure performed, including preparation and execution? |
Experience of the treatment |
Can you describe how you/your child experienced the treatment? |
Post-treatment reflections |
Can you describe how you/your child felt after the treatment? |
Principle | Described as | Linked to |
---|---|---|
Agency | Described as being agentic, social agents, or agentic beings | Linked to children’s rights and their participation in healthcare |
Participation | Described as degrees of involvement and inclusion | Linked to eliciting children’s perspectives and preferences |
Impact | Described as impact on practice or experiences | Linked to context-specific and more generalizable impacts |
Decision-making | Described in terms of children being involved | Linked to children making choices based on their needs and interests |
Communication | Described in terms of voices, dialog, expression, and cocreation | Linked to presenting their experiences and wishes |
Id | Age * | Gender | GMFCS | UL/BL | Parent | Earlier BoNT-A ** |
---|---|---|---|---|---|---|
1 | 6 | M | I | BL | mo | 0 |
2 | 9 | M | I | UL | fa | 3 |
3 | 4 | F | I | UL | mo | 0 |
4 | 4 | F | I | UL | fa | 0 |
5 | 11 | F | I | UL | mo | 1 |
6 | 8 | F | I | UL | mo | 3 |
7 | 9 | F | I | UL | fa | 0 |
8 | 10 | M | I | UL | mo | 16 |
9 | 7 | F | I | UL | fa | 0 |
10 | 11 | M | I | UL | fa | 3 |
11 | 15 | M | II | UL | fa | 0 |
12 | 8 | M | I | UL | mo | 15 |
13 | 12 | F | II | UL | mo | 1 |
14 | 10 | M | I | UL | mo | 6 |
15 | 7 | F | I | UL | mo | 5 |
16 | 14 | M | I | UL | fa | 1 + |
17 | 8 | M | I | UL | mo | 1 + |
18 | 10 | M | I | UL | fa | 1 + |
19 | 9 | F | I | UL | mo | 0 |
20 | 10 | F | II | UL | mo | 9 |
Themes | Categories |
---|---|
Preparing for the treatment | Between fear and familiarity |
Navigating information | |
Being in the moment | Managing pain |
Experiencing the injection | |
Adapting after treatment | Regaining stability |
Coping through rewards |
CCC Principle | Example Strategies |
---|---|
Agency |
|
Participation |
|
Impact |
|
Decision-making |
|
Communication |
|
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2025 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Sæther, R.; Brændvik, S.M.; Elvrum, A.-K.G. Between Anxiety and Adaptation: Children’s and Parents’ Experiences with Botulinum Toxin Treatment in Cerebral Palsy. J. Clin. Med. 2025, 14, 3164. https://doi.org/10.3390/jcm14093164
Sæther R, Brændvik SM, Elvrum A-KG. Between Anxiety and Adaptation: Children’s and Parents’ Experiences with Botulinum Toxin Treatment in Cerebral Palsy. Journal of Clinical Medicine. 2025; 14(9):3164. https://doi.org/10.3390/jcm14093164
Chicago/Turabian StyleSæther, Rannei, Siri Merete Brændvik, and Ann-Kristin Gunnes Elvrum. 2025. "Between Anxiety and Adaptation: Children’s and Parents’ Experiences with Botulinum Toxin Treatment in Cerebral Palsy" Journal of Clinical Medicine 14, no. 9: 3164. https://doi.org/10.3390/jcm14093164
APA StyleSæther, R., Brændvik, S. M., & Elvrum, A.-K. G. (2025). Between Anxiety and Adaptation: Children’s and Parents’ Experiences with Botulinum Toxin Treatment in Cerebral Palsy. Journal of Clinical Medicine, 14(9), 3164. https://doi.org/10.3390/jcm14093164