Helping Kids Understand Stroke and Aphasia
When I first started working as a speech-language pathologist (S-LP) at the Aphasia Institute in Toronto, Canada, the majority of my clients were seniors. Over the years the demographic shifted to a younger population. According to the CDC, every year, more than 795,000 people in the United States have a stroke. Stroke in young adults (under 50 years) is estimated to represent 10-15% of all strokes. Many of these stroke survivors have young children and face unique challenges around parenting and family functioning. Communication is an essential element in parenting. When parents with stroke also have aphasia, the challenges are magnified. Imagine how many conversations you have with your child in one day. Now, imagine not being able to ask them questions about school, share words of wisdom, or read them a bedtime story.
My journey in writing 'Listen with Your Heart: Helping Kids Understand Stroke and Aphasia' happened to start with a bedtime story. One night, my daughter didn’t want to go to bed after story time. She was upset and I was tired. I told her to talk it out with her stuffy, Pink Puppy. She wasn’t buying it and told me that Pink Puppy doesn’t talk back, so she couldn’t help her go to sleep.
For some reason, I thought of a phrase used by an amazing social worker named Charline Sherman. As a new grad I was in awe at how Charline always knew what was under the surface of a comment or situation. When I asked her the secret, she told me, "I listen with my heart." I told my daughter that while Pink Puppy may not talk, she listens with her heart. My daughter was satisfied with that response and went to bed, and I had the spark that would become the main theme of my book. When connecting with people with aphasia, it’s often more important to listen with your heart, listen to the body language, listen to the tone, than listening to the specific words being used.
I felt and saw the challenges faced by young stroke survivors and S-LPs looking for resources. I couldn’t imagine being a parent to a young child, not understanding my own aphasia, and now having to try and explain it to my child. I knew I had the skills and knowledge to create something to fill this gap. Now I had the inspiration I needed.
My belief about the lack of resources and need for education in this area was confirmed by research. More than 75% of S-LPs surveyed indicated that they believed there is a need to improve the services provided to children of parents with an acquired communication disability. They outlined barriers such as limited access to children in therapy sessions, lack of confidence in having the conversations, not knowing if children should be included in therapy, lack of resources, funding, and time.
'Listen with Your Heart' was written to help fill this need and give healthcare providers and caregivers strategies, language, and confidence to educate children on this important topic. 'Listen with Your Heart' is intended to help those impacted by stroke and aphasia, while encouraging an attitude of acceptance and hope. When reading the book, you will notice questions and comments at the bottom of some pages. These conversational prompts have been carefully considered to foster conversations. My hope is that the book will be used not only to explain aphasia and conversational supports, but also as a doorway to difficult but important conversations. Topics, questions and feelings families may not have anticipated, but ones that I know often come up with time.
While using the book to discuss stroke and aphasia with children, I feel it is important to address their concerns openly. Caregivers may sometimes avoid discussing stroke and aphasia to protect children, however, children can often sense when something is wrong. Take time to understand what the child thinks about the situation, as their emotions and reactions can vary greatly. Avoid promising complete recovery, as progress can vary greatly. It is helpful to reassure the child that it is not their fault. If there are worries about the child’s well-being, seek guidance from a family doctor or mental health professional.
'Listen with Your Heart' fills an important gap in services for people with aphasia! I hope you find something meaningful within its pages.
About the Author
Lisa Samson is a speech-language pathologist who has worked with individuals and families with aphasia and acquired brain injuries since graduating from the University of Toronto in 2008. Lisa developed her clinical skill set while working at the Aphasia Institute, where she practiced for over 10 years. Lisa is an Assistant Clinical Professor (Adjunct) at McMaster University. Using the Life Participation Approach to Aphasia and supported conversation techniques, Lisa has guided numerous families, individuals, and healthcare professionals. Lisa currently works at Lear Communication serving clients in the Greater Toronto Area.
For More Information Contact: Resourcefulslp@gmail.com
References and related articles
Brain Injury Canada. (2020). Language and communication. https://braininjurycanada.ca/en/living-brain-injury/language/
Bright, Felicity, Attrill, Stacie, & Hersh, Deborah. (2021). Therapeutic relationships in aphasia rehabilitation: Using sociological theories to promote critical reflexivity. International Journal of Language & Communication Disorders, 56(2), 234–247. https://doi.org/10.1111/1460-6984.12590
Bright, Felicity A. S, Kayes, Nicola M, McPherson, Kathryn M, & Worrall, Linda E. (2018). Engaging people experiencing communication disability in stroke rehabilitation: a qualitative study. International Journal of Language & Communication Disorders, 53(5), 981–994. https://doi.org/10.1111/1460-6984.12409
Dawes, K., Carlino, A., van den Berg, M., & Killington, M. (2020). Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions. DIsability and Rehabilitation, 44(2), 282–290. https://doi.org/10.1080/09638288.2020.1766582
Dawes, K., Simpson, G., Lines, L., & Van Den Berg, M. (2024). Interventions to support children after a parental acquired brain injury: A scoping review. Brain Injury, 38(10), 773–786. https://doi.org/10.1080/02699052.2024.2347555
DeVries, D., & Sunden, S. (2019). Bibliotherapy with children who have a sibling with a disability. Journal of Poetry Therapy, 32(3), 135–155.
https://doi.org/10.1080/08893675.2019.1625147
Gabrielle M. Harris & Janet Prvu Bettger (2018) Parenting after stroke: a systematic review, Topics in Stroke Rehabilitation, 25:5, 384-392, DOI:10.1080/10749357.2018.1452366 Harris Walker, Gabrielle, Oyesanya, Tolu O,
Hallé, M & Le Dorze G. (2013). Understanding significant other’s experience of aphasia and rehabilitation following stroke. Disability and Rehabilitation, 38 (21), 1774-1782.
Harlow, Ann, & Murray, Laura L. (2001). Addressing the Needs of Adolescent Children When a Parent Becomes Aphasic: One Family's Experiences. Topics in Stroke Rehabilitation, 7(4), 46–51. https://doi.org/10.1310/3V28-6BQ5-CWPG-V3UF
Hurley, Alexandria, Sandhu, Sahil, Liu, Chelsea, Mulla, Maaz, & Prvu Bettger, Janet. (2021). Recovery experiences of younger stroke survivors who are parents: A qualitative content analysis. Journal of Clinical Nursing, 30(1-2), 126–135. https://doi.org/10.1111/jocn.15529
Kissela, B. M., Khoury, J. C., Alwell, K., Moomaw, C. J., Woo, D., Adeoye, O., Flaherty, M. L., Khatri, P., Ferioli, S., De Los Rios La Rosa, F., Broderick, J. P., & Kleindorfer, D. O. (2012). Age at stroke: Temporal trends in stroke incidence in a large, biracial population. Neurology, 79(17), 1781–1787. https://doi.org/10.1212/WNL.0b013e318270401d
Kitzmüller et al., (2012). Long-term Experiences of Living with Stroke in a Family Context. Faculty of Health Sciences. https://munin.uit.no/bitstream/handle/10037/4623/thesis.pdf?isAllowed=y&sequence=2
Lawrence, M 2010, 'Young adults’ experience of stroke: a qualitative review of the literature', British Journal of Nursing, vol. 19, no. 4, pp. 241-248.
Le Dorze, Guylaine, Tremblay, Véronique, & Croteau, Claire. (2009). A qualitative longitudinal case study of a daughter's adaptation process to her father's aphasia and stroke. Aphasiology, 23(4), 483–502. https://doi.org/10.1080/02687030801890909
Ller, Gabriele Kitzmü, Asplund, Kenneth, & Häggströ, Terttu. (2012). The long-term
experience of family life after stroke. The Journal of Neuroscience Nursing, 44(1), E1–E13. https://doi.org/10.1097/JNN.0b013e31823ae4a1
Manders, E., Mariën, A., & Janssen, V. (2011). Informing and supporting partners and children of persons with aphasia: A comparison of supply and demand. Logopedics Phoniatrics Vocology, 36(4), 139–144. https://doi.org/10.3109/14015439.2011.562534
Manning, Molly, MacFarlane, Anne, Hickey, Anne, & Franklin, Sue. (2019). Perspectives of people with aphasia post-stroke towards personal recovery and living successfully: A systematic review and thematic synthesis. PloS One, 14(3), e0214200–e0214200. https://doi.org/10.1371/journal.pone.0214200
Michie, S., Van Stralen, M. M., & West, R. (2011). The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science, 6(1), 42. https://doi.org/10.1186/1748-5908-6-42
Shrubsole, K., Pitt, R., Till, K., Finch, E., & Ryan, B. (2021). Speech language pathologists’ practice with children of parents with an acquired communication disability: A preliminary study. Brain Impairment, 22(2), 135–151. doi:10.1017/BrImp.2020.11
Vetri, K., Piché, G., & Villatte, A. (2022). An evaluation of the acceptability, appropriateness, and utility of a bibliotherapy for children of parents with a mental illness. Frontiers in Psychiatry, 13, 815873.
Walker, H.G., Oyesanya, T. O., Hurley, A., Sandhu, S., Liu, C., Mulla, M., & Prvu Bettger, J. (2021). Recovery experiences of younger stroke survivors who are parents: A qualitative content analysis. Journal of Clinical Nursing, 30(1–2), 126–135. https://doi.org/10.1111/jocn.15529
Yahya, T, et al., (2020).Stroke in young adults: Current trends, opportunities for prevention and pathways forward. American Journal of Preventative Cardiology, vol 3 https://doi.org/10.1016/j.ajpc.2020.100085
