Welcome
Start exploring here! We hope this will be a useful resource to help you find the information you need about cerebral palsy and other childhood-onset disabilities. We want to help you to find answers to your questions – so please let us know what else you would like us to cover. Here we are presenting videos, summaries, research information and other resources.
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Ways we can help
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Family-friendly Books
Discover our collection of family-friendly books featuring accessible, research-based insights. These titles include the perspectives of families and individuals with lived experience, offering valuable guidance while supporting parents on their journey.
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Free Chapters
We have selected a range of chapters from our books, offering helpful insights and practical tips. Our chapters summaries highlight key points. View the full chapter to explore each topic in more depth.
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The Knowledge Bank
Explore the answers to your questions here. Find out more about conditions, treatments, interventions, and all aspects of care. Follow signposts to find more in-depth, evidence-based information from Mac Keith Press content, as well as other great sources of knowledge.
4
Plain Language Summaries
Plain language summaries are an effective way of communicating scientific research to a wider audience. By presenting the key findings and significance of a study in easy-to-understand language, the content becomes more accessible to more people. Here we present summaries of papers published in Developmental Medicine & Child Neurology (DMCN).
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Helpful Videos
Here you will find a collection of short videos from authors and editors summarising their work. They cover Developmental Medicine & Child Neurology (DMCN) articles, Mac Keith Press books and e-learning. The aim of the videos is to help viewers get a clear understanding of why the research is important, how it was carried out, and real-world implications.
Gillette Children’s Healthcare Series
The goal of the Gillette Children’s Healthcare Series is to empower families through a greater understanding of their condition and therefore help optimize outcomes for children, adolescents and adults living with these childhood-acquired and largely lifelong conditions.
Scoliosis: Congenital, Neuromuscular, Syndromic and other Nonidiopathic Types
“I highly recommend this impactful book for families and professionals working in the field of scoliosis.”
Ann Marie Sutton, Parent of daughter with scoliosis, US
Click on ‘Buy Now’ to find out more!
Epilepsy
“Finally! A book that truly helps families understand epilepsy. As a mother of a special needs child with epilepsy, I found Epilepsy to be an invaluable resource. This book skillfully combines medical insights with heartfelt stories, addressing the real-life challenges families like ours face every day. … I wish I had this book at the beginning of my journey. It’s a must-read for any family navigating life with epilepsy.”
Colleen Peterson, parent of son with Wolf-Hirshhorn and Lennox-Gastaut syndromes, USA
Click on ‘Buy Now’ to find out more!
Spastic Diplegia
“This is an indispensable guidebook for navigating spastic diplegia, as it is written for families with the condition. It imparts a deep understanding of the medical science and treatment pathways, supported by comprehensive evidence-based references and information resources. The author’s generous sharing of her and her son’s journey, and those of many others, provides valuable sign-posting, hope, and inspiration for the reader.”
Jean and John Glynn, parents of a son with spastic diplegia, Ireland
Click on ‘Buy Now’ to find out more!
Spastic Hemiplegia
“As someone with right spastic hemiplegia, I was amazed by how much of the information was relevant to my memories of childhood therapy appointments and doctor visits. I deeply enjoyed reading the testimonies of those with CP, and I felt recognized inside their stories. From small things like official medical terminology to detailed explanations on why I was receiving certain treatments as a child, this book helped me not only recontextualize my own experiences but also prepared me to be a better medical advocate for myself moving into adulthood.”
Emmalynne Shumard, Student; Adult with spastic hemiplegia, US
Click on ‘Buy Now’ to find out more!
Spastic Quadriplegia
“This book presents clear and concise explanations and eliminates the confusion caused by misinformation online. It has helped me realize that we are not alone; there are other families just like ours experiencing the same highs and lows, joys and sorrows. It will provide comfort and hope to families striving to adjust to a new and oftentimes difficult diagnosis.”
Kristen Stier, Mother of a young adult with spastic quadriplegia, US
Click on ‘Buy Now’ to find out more!
Craniosynostosis
“This is an excellent and informative book that is both clear and factual. It serves as a valuable resource for families, providing them with essential knowledge about craniosynostosis and empowering them to engage confidently with medical and health professionals. The personal stories included offer hope and reassurance, reminding families that they are not alone in their journey. This is the book I wish I had when my son was diagnosed with sagittal craniosynostosis in 2019.”
Elaine L. Kinsella, Parent; Chartered Psychologist and Associate Professor in Psychology, University of Limerick, Ireland
Click on ‘Buy Now’ to find out more!
Idiopathic Scoliosis
“This book is great for anyone on this journey! Our daughter was diagnosed with juvenile idiopathic scoliosis right before she started kindergarten, and we were so worried and overwhelmed, and had so many questions. We wish we had this book during that time as it answers so many questions. We still have many questions and this book helps us pave a path today and for the future.”
Amber Marlatt, Parent of daughter with juvenile idiopathic scoliosis, US
Click on ‘Buy Now’ to find out more!
Free chapter downloads
Feeding and Nutritional Management Strategies
Nutrition and Neurodisability highlights managing feeding and nutrition in children with neurological impairments. Chapter 9 highlights how a multidisciplinary team approach can improve feeding safety and efficiency, addressing issues like dysphagia, poor nutrition, and gastrointestinal problems. Interventions include oral nutrition support, tube feeding, and caregiver training.
Personal experiences from a young person with visual impairment, Holly Tuke
This chapter is a personal account by Holly Tuke, a woman with retinopathy of prematurity, which caused blindness. Despite challenges with accessibility and independence, Holly excelled academically with support and assistive technology. Now a university graduate, she works in the charity sector and runs a successful blog, advocating for disability awareness.
Cerebral Palsy: Through the Eyes of Parents
Parents raising children with complex cerebral palsy (CP) face emotional, practical, and social challenges, including balancing caregiving with personal needs. Support from clinicians, fostering the child’s independence, and improving quality of life through recreational activities are essential. Long-term care planning and focusing on the child’s interests are also important.
Life with and for a Person with Down Syndrome
Families of children diagnosed with Down syndrome often face concerns about health, development, and support. It’s essential to deliver the diagnosis with care and provide accurate, up-to-date information. Early health assessments, addressing feeding challenges, and fostering development are key to helping children thrive, supported by love, encouragement, and healthcare guidance.
What is Cerebral Palsy?
‘Cerebral palsy (CP) describes a group of permanent disorders of the development
of movement and posture, causing activity limitation, that are attributed
to non-progressive disturbances that occurred in the developing fetal or infant
brain. The motor disorders of cerebral palsy are often accompanied by disturbances
of sensation, perception, cognition, communication, and behaviour,
by epilepsy, and by secondary musculoskeletal problems.’ This is the official (2007) definition – read the full chapter to find out much more.
How to Promote a Physically Active Lifestyle Across the Lifespan
The Knowledge Bank
Explore the answers to your questions here. Find out more about conditions, treatments, interventions, and all aspects of care. Follow signposts to find more in-depth, evidence-based information from Mac Keith Press content, as well as other great sources of knowledge.
Are there activities my child with epilepsy should avoid?
Certain activities may require precautions, such as swimming (with supervision), driving (only after seizure freedom and medical approval), or operating machinery.
Are there activities my child with epilepsy should avoid?
This answer is adapted from section 10.3 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families.
In general, children with epilepsy are encouraged to participate in normal activities, including school, sports, and social events, as long as safety measures are in place. While most activities are safe, some may need to be adjusted based on the individual’s seizure type, frequency, and control.
For example, certain activities may require precautions, such as swimming (with supervision), driving (only after seizure freedom and medical approval), or operating machinery. These decisions are typically made in consultation with a healthcare provider.
Open communication with the child’s medical team is essential to determine what is safe and appropriate.
How can parents help their child with cerebral palsy develop independence?
Parents can support their child’s independence in tasks like dressing or eating by breaking these activities into smaller, achievable steps. Using adaptive tools, offering consistent opportunities to practice, and allowing the child to explore solutions at their own pace helps build confidence and skill without overwhelming them. For more information, please read the extract from chapter 21 of ‘Children and Youth with Complex Cerebral Palsy’. Full chapter available to download.
How can parents help their child with cerebral palsy develop independence?
Extract from Glader and Stephenson, ‘Children and Youth with Complex Cerebral Palsy’, Chapter 21, page 330:
Tips for Parents of Children with Complex CP
- Pay attention to how much intellectual and personal energy you are giving toward finding answers for your child. Be sure to carve out times during the day to simply be with your child, other family members, or spouse without thinking about CP and the challenges your child faces.
- Don’t sacrifice reason and good sense to help your child. New therapies will constantly be presented as the treatment for CP. Before trying a new therapy, make a list of the sacrifices the treatment will require you and your family to make. Weigh the emotional and financial costs and the physical, safety, and unknown risks the treatment will present against the possible benefits for your child. Remember that a treatment without any known risks does not mean it is risk free. Discuss these issues with people you trust and your child’s medical team. Set time commitment limits and financial limits and be aware of your expectations about the treatment.
- Your child will have his or her own developmental timeline. When you compare your child to other same aged peers, you may subliminally approach your child with disappointment and he or she may perceive this as something he or she is doing wrong. Focus on the positive points, the things that are working and the small, incremental steps that lead to putting together larger developmental pieces.
- Assess and honor your child’s physical and cognitive energy limits each day. These may change daily. You know your child best. Don’t be afraid to speak up if you think what is best for your child is different from what the experts advise.
- Be aware of what is driving your approach to your child’s therapy/developmental support program. Be honest with yourself and look out for guilt, fear, and hopelessness that are motivating you to push your child and other family members too much. This may be difficult territory to sort through and balance, but is often part of the emotional journey that is a necessary step to accept the CP diagnosis. Remember, it’s your child who ultimately has to participate in the therapy and integrate all the information that comes from your therapy planning.
- Creating a balanced schedule becomes easier as your child’s developmental picture becomes clearer. Over time, as you and your professional team have had a chance to observe your child, you will have a better understanding of how to focus your time and which therapies and treatments work best for your child. In addition, you child’s clinical team may use the Gross Motor Classification System (GMFCS, see Chapter 1) to help guide decision making around goals and treatments.
- Focus on what your child does well and what they like. Integrate interests with opportunities for development. For instance, perhaps a child likes the water. Swimming is an activity that your child can enjoy while also developing their motor skills.
- Explore respite resources in your area including what is offered by local parent-to-parent offices, churches or other religious centers, and state programming that allows for in-home support for your child. Some US states offer programs through Medicaid/TEFRA/Katie Beckett that allow for parents to have respite hours. Additionally, your area may have medical day care centers which offer out-of home respite programs. Contact your local Health and Human Services Agency for more information.
How can parents support a child with vision impairment to become more independent and successful?
Parents can encourage their child with vision impairment by treating them like any other child, fostering independence, and promoting the use of assistive technology. Providing emotional support, learning braille or assistive tools together, and ensuring access to resources like mobility training and specialized equipment also enhance independence and self-confidence.
For more information, please read the extract from chapter 21 ‘Personal Experiences from a Young Person’ from ‘Children with Vision Impairment’. Full chapter available to download.
How can parents support a child with vision impairment to become more independent and successful?
Extract from Dale et al., ‘Children with Vision Impairment’, Chapter 21 ‘Personal Experiences from a Young Person’, p. 260
What is important to me as a young person with a vision impairment:
- Being encouraged to strive for success and to have aspirations; having a disability is not an obstacle for success.
- Recognising that every child or young person with vision impairment is different, just like their peers. What works for one person may not work for another.
- Being listened to and understood.
- Remembering that vision impairment is a spectrum and it is important for others to understand what a young person can or cannot see.
- Focussing on the positives of having a vision impairment such as being part of the vision impairment community and proactively acting on these positives.
DMCN articles
For further information, read the below papers on vision impairment in DMCN:
- Interventions for children with cerebral visual impairment: A scoping review
- Autonomy in children and adolescents with visual impairment: Validation of the Visual Impairment Developmental Autonomy scale
- Early visual training and environmental adaptation for infants with visual impairment and its plain language summary
What are some key strategies for parents to manage feeding difficulties in their child with neurodisability, and how can a multidisciplinary team (MDT) support this?
Parents can manage feeding difficulties in children with neurodisability by creating a calm mealtime environment, ensuring proper positioning, using adaptive feeding techniques and equipment, and modifying food textures. A multidisciplinary team (MDT) can provide comprehensive support, including nutritional assessments, caregiver training, and tailored feeding strategies. For more information, please read the extract from chapter 9 of ‘Nutrition and Neurodisability’. Full chapter available to download.
What are some key strategies for parents to manage feeding difficulties in their child with neurodisability, and how can a multidisciplinary team (MDT) support this?
Extract from Sullivan, Andersen and Andrew, ‘Nutrition and Neurodisability’, Chapter 9 (free download), pp. 153-154
Postural Management and Positioning When Eating
Optimal positioning to improve head and trunk stability during mealtimes provides a critical foundation for both safety and efficiency, and is a priority for all children with feeding difficulties (Benfer et al. 2013). Optimal mealtime positioning influences tone and overall patterns of movement, improves coordination of oral motor movements, enhances respiration and airway protection, provides a mechanical advantage for bolus dynamics, positively influences reflux and gut motility, and improves self-feeding (Hulme et al. 1983). Modification of a child’s sitting position from one of generalised extension to greater flexion (particularly at the hips and knees) can facilitate jaw stability and head flexion (Stratten 1981). A stable and aligned head position, achieved both through overall body positioning and specific head support (including head rests or occipital rolls), may improve position, mobility and coordination of the lips, tongue and oral anatomy (Lanert & Ekberg 1995).
Ideal mealtime positioning involves the child seated upright, with 90-degree hip flexion, feet supported, head in midline and aligned on the anterior–posterior plane, and chin slightly tucked. However, no single optimal position exists for all children. Recommendations for mealtime position should be made in collaboration with the child’s physical or occupational therapist, incorporating individualised findings from video fluoroscopy when appropriate and available (Lanert & Ekberg 1995; Gisel et al. 2003). Options for improving mealtime positioning may include specialised seating (infant feeder seats, wheelchairs or supportive chairs); the adaptation of regular seating using pillows, rolled towels, foam and support straps; or postural support by the care-giver’s body. A tray may provide additional postural support and allow stabilisation of the upper limb and shoulder girdle, to achieve a functional sitting position (Stavness 2006). Whilst an upright position is generally advocated, up to 30 degrees of recline, for children who are unstable in an upright position, reduces lip pursing, gag and tongue thrust (Lanert & Ekberg 1995). The upright position may be more beneficial than recline for children with poor pharyngeal clearance or those requiring a slower bolus flow rate (Morton et al. 1993). Flexed head position and chin tuck improves protection of the airway, decreases risk of laryngeal penetration and aspiration and is particularly helpful for children with a delayed swallow initiation (Lanert & Ekberg 1995). Preliminary evidence suggests that reductions in aspiration from improved position, combined with texture modification of food and fluids, translate into longer-term improvements in respiratory function for children with severe feeding difficulties (Gisel et al. 2003).
For an overview of feeding, nutrition and growth in children with complex CP please read chapter 7 of ‘Children and Youth with Complex Cerebral Palsy: Care and Management’, edited by Laurie Glader and Richard Stevenson. Free chapter download.
DMCN articles
For further information, read the below papers on feeding difficulties in DMCN:
- Prevalence of drooling, swallowing, and feeding problems in cerebral palsy across the lifespan: a systematic review and meta-analyses
- Eating and drinking abilities and respiratory and oral health in children and young adults with cerebral palsy and its plain language summary
- Eating and drinking ability and nutritional status in adults with cerebral palsy and its plain language summary
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Plain Language Summaries
Plain language summaries are an effective way of communicating scientific research to a wider audience. By presenting the key findings and significance of a study in easy-to-understand language, the content becomes more accessible to individuals with disabilities, parents, caregivers, and others. Here we present summaries of papers published in Developmental Medicine & Child Neurology (DMCN).
Sleep problems in children with cerebral palsy and their parents
The study found that sleep problems are common in children with cerebral palsy (CP) aged 0 to 11 years. The most common problems reported by parents were: daytime fatigue, difficulty falling asleep, and early-morning waking. Children with CP were also more likely to have sleep problems than typically developing children, and children with CP who cannot walk were more severely affected by sleep problems than children with CP who can walk.
Quality of life in caregivers of a child with a developmental and epileptic encephalopathy
Developmental and epileptic encephalopathies (DEEs) are severe forms of epilepsy that usually start during infancy. There are many types of DEE, making each specific diagnosis extremely rare. Children with a DEE typically have seizures that are hard to treat and that impact their development and learning. Other symptoms may include feeding difficulties, movement problems, and features on the autism spectrum.
Experiences of children and adolescents with attention-deficit/hyperactivity disorder taking methylphenidate
Understanding the experiences of adolescents diagnosed with attention-deficit/hyperactivity disorder (ADHD) and taking ritalin and other stimulant medication is crucial in order to improve medical counselling to them. A central theme in these experiences is adolescents’ self-esteem and their sense of control on their body and life.
Epilepsy and cannabis: so near, yet so far
In 2018, the UK government changed the law so that cannabis-based medicines could legally be prescribed. Since then, very few prescriptions have been issued. Why is this?
Some children with epilepsy have seizures that respond very poorly to standard medications and their quality of life suffers. CBMPs may have an important role in helping those children. There are many forms of CBMPs and one medicine, cannabidiol, now has a license for some rare types of epilepsy.
Child-led goal setting and evaluation tools for children with a disability: A scoping review
Children with disabilities and delays benefit from being involved in setting and evaluating intervention goals. When goals hold personal value for children, they can feel more motivated to work towards them, which can improve their intervention outcomes. However, in current practice, parents or therapists are most often the primary decision-makers about intervention priorities. Which practices support allied health professionals to involve children with disabilities in goal setting and evaluation?
‘Power in Mobility’: Parent and therapist perspectives of the experiences of children learning to use powered mobility
This study focuses on the importance of mobility for children with mobility impairments and the impact of using powered mobility devices on their development and participation. To gather data, interviews with parents and therapists of children who had recently started using powered mobility devices were analyzed to identify common themes and gain insights into the experiences and perceptions of parents and therapists.
Survival of individuals with cerebral palsy: A Victorian longitudinal cohort study spanning four decades
The aim of this research was to provide an updated description of the death rates, trends in death rates over time, and predictors of deaths of persons with cerebral palsy (CP) who were born in the Australian state of Victoria between 1970 and 2012. The authors found that improvements in survival for those born in the 2000s was likely mainly related to a proportional reduction in complex CP, a finding that is supported by other studies.
Letting Tourette’s be: The importance of understanding lived experience in research and the clinic
Tourette syndrome is a neurodevelopmental condition characterized by involuntary movements and sounds that are known as tics. Historically, the focus of biomedical and clinical research and treatment has been on reducing these tics, viewing them primarily as symptoms of a neurological disorder. However, in this article we argue that this approach is too narrow as it does not adequately consider the lived experiences of Tourettic individuals.
UK research priority setting for childhood neurological conditions
In this project, the researchers wanted to find the most important unanswered questions about treatments, or therapies for children and young people with childhood neurological conditions such as epilepsies, cerebral palsy, and many rare conditions. This is called a Priority Setting Partnership. Priority Setting Partnerships aim to help patients, carers, and health professionals work together to agree research priorities. After two rounds of surveys, the top 10 priorities were identified.
Environment-based approaches to improve participation of young people with physical disabilities during COVID-19
Personalized interventions to enhance participation in meaningful activities in everyday environments are recommended for young people with physical disabilities. Pathways and Resources for Engagement and Participation (PREP) is one such intervention, focusing on changing the environment (e.g. inaccessibility, limited social support, lack of availability of programs) and coaching young people/parents and community members on removing environmental barriers.
Magic-themed motor training for daily bimanual task performance in children with unilateral spastic cerebral palsy: A systematic review and meta-analysis
Unilateral spastic cerebral palsy (CP) is a disorder of motor and postural development caused by early brain injury. This impairment poses significant challenges for daily physical tasks such as getting dressed, taking a shower, cutting food, etc. The authors of this study undertook a systematic literature review to discover what research has taken place on the effectiveness of magic-themed interventions in improving task performance in both hands in children with unilateral spastic CP.
Helpful videos
Here you will find a collection of short videos from authors and editors summarising their work. They cover Developmental Medicine & Child Neurology (DMCN) articles, Mac Keith Press books and e-learning. The aim of the videos is to help viewers get a clear understanding of why the research is important, how it was carried out, and real-world implications.
UK research priority setting for childhood neurological conditions| Jill Cadwgan & Rhys Inward |DMCN
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