Children and Youth with Complex Cerebral Palsy: Care and Management
03 June 2019 (eFirst)
Children and Youth with Complex Cerebral Palsy: Care and Management. Laurie Gladder and Richard Stevenson (eds.). A practical guide from Mac Keith press. London: Mac Keith Press, 2019. £45.20 (paperback), pp. 404. ISBN: 978-1-909962-98-9
The cover of this volume shows many children with higher gross motor function classification system (GMFCS) levels participating in different activities like painting, picking fruit, playing cricket, holding a chicken, and cheerleading. Laurie Glader and Richard Stevenson are leaders in the field of neurodisability with a special interest in care and management of children with cerebral palsy (CP) having often several comorbidities. They were able to motivate a broad coauthorship of all the specialties needed for a holistic approach to care for the severely affected children with CP. Their preface reflects their sincere wish to provide guidelines for the management of those children taking into serious consideration all their different comorbidities at the present level of evidence. Their learning attitude can be recognized in their statement regarding the contribution of all their patients: “you have been our,” “continuing education” in the field, helping us to see beyond our sometimes narrow medical view to a perspective that is always broad and meaningful.”
The book is organized in 23 chapters. Starting with classification systems within the framework of International Classification of Functioning, Disability and Health (ICF) in the first chapter, the second chapter gives a good introduction in functional assessments. The comprehensive “Cincinnati Children's Hospital Cerebral Palsy Care Map” seems to me a most helpful roadmap of a comprehensive care and management of children with CP with lower and higher GMFCS levels as an interdisciplinary tool. The third chapter covers different forms of hypertonia, the knowledge of which allow a more adequate management. The 4th chapter contains the most relevant insights of musculoskeletal and orthopaedic management under the perspective of improving or maintaining function and preventing pain. Chapter 5 includes the empowering possibilities of seating and mobility aids. Chapters 6 to 9 and 14 to 16 embrace the most frequent comorbidities osteoporosis, feeding and nutrition, gastrointestinal challenges, pulmonary and sleep disorders, pain, seizures, and urologic issues, and their managements. The chapters 10 to 13 contain more developmental issues of assessing and supporting speech and communication, cognition and sensory function, challenging behaviors, sleep and toileting, as well as mental health as basis for adequate facilitation of the different developmental aspects and set common goals with the children and their care providers as far as possible. Chapter 17 and 18 entail important themes of adolescence and sexuality as well as transition into adulthood with a most helpful “transition checklist,” “a transition readiness assessment questionnaire (TRAQ),” “a care as well a medical summary for a transitioning patient,” a “care plan,” and an “adult transition policy” which reflects an attitude of empowerment young people with disabilities without denying necessary support and care in adulthood. The last five chapters (19–23) empower parents and professionals to better care for the children by encouraging each other: a “tool chest for empowering families navigate treatment options” starting with defining the question or goal for treatment, with difficult topics and decision makings providing a helpful list of common emotional defenses for difficult themes like out of home care, nonoral feeding, tracheostomy, orthopaedic procedures and surgery, addressing the needs of the whole family, palliative care, and resuscitation to name a few topics. Chapter 21 reflects the perspective of parents to adapt to and to cope with a child with severe CP, to promote the child's independence and participation in leisure activities, to take care of themselves, and to anticipate transition into adulthood. Chapter 22 is written by adolescents and adults with CP providing valuable experiences how to grow up, how to grow well with cerebral palsy, and to participate as much as possible in life. The last chapter contains again a large care tool for clinical practice: the “health review for children with CP,” the “equipment, supplies, and support,” and the “ICF-based care: goals and management form” with the links for download. Each chapter contains many tables summarizing the content and “key points” at the end of each chapter enclosing the most important facets of each topic. Broad reference lists at the end of each chapter provide further information.
I found reading this volume very informative for both beginners and advanced professionals in the field of treating of and caring for children with complex CP. I fully agree with Carole Shrader, a mother with triplets who provided the foreword that this volume reflects the necessity of a holistic approach of all involved in the care of a child with complex CP, to carry out their professional work with competence, as well as with passion. It encourages involving the parents and as much as possible children and young persons with CP to set common goals, to empower and to encourage parents to care for their child with special needs, as well as for themselves and the siblings.
In summary, this book is indeed a comprehensive guide for treatment and care for highly dependent children with CP with multiple comorbidities in a standardized fashion. Laurie Glader and Richard Stevenson and the contributing experts are helping us to see more clearly how to achieve this and provide many helpful tools. Therefore, I can highly recommend this book for professionals at all levels of experience working with children with complex CP.