A Resource Guide to Understanding Cerebral Palsy- Commentary on Collaboration to Support Health Literacy and Shared Decision Making

A Resource Guide to Understanding Cerebral Palsy- Commentary on Collaboration to Support Health Literacy and Shared Decision Making

© Elizabeth Chan et al., 2021. The definitive, peer reviewed and edited version of this article is published in Journal of Pediatric Rehabilitation Medicine, volume 14, issue 2, pages 173-182, 2021, DOI:10.3233/PRM-210026. 

Collage of individuals and families with cerebral palsy wearing green t-shirts that say go green for CP

Introduction

Understanding and managing healthcare and the healthcare system can be daunting for all of us. Attitudes of both providers and patients toward healthcare have experienced significant changes over the past few decades, shifting away from a focus on providers addressing problems as they arise, to more of a partnership and a shared decision-making process to maximize function, well-being, and reduce potential morbidities [1].

Shared decision making is particularly important for people with chronic conditions including cerebral palsy (CP), as this population has unique challenges and complex needs across the lifespan that impact health and function. In 2007, a consensus was reached which expanded the definition of cerebral palsy to a group of permanent disorders of the development of movement and posture causing activity limitation attributed to a non-progressive injury to the developing brain [2]. Cerebral palsy is the most common lifelong motor disability often accompanied by disturbances of sensation, perception, cognition, communication and behavior, vision, hearing, the gastrointestinal tract, epilepsy, & secondary musculoskeletal problems. This expanded definition aims to include ramifications of co-conditions and how these various conditions impact activity, affect function, and influence health [3].

As healthcare moves towards a more patient-centered approach with an emphasis on collaboration in decision-making between providers and patients, the issue of health literacy has come to the forefront.

Access to information has changed dramatically with the advent of technology over the years. Currently, there are over 4 billion active internet users worldwide, equating to about 57% of the global population, and there are about 3.9 billion mobile internet users worldwide [4]. More people than ever before have access to health related information through the internet or a mobile device. A plethora of cerebral palsy educational resources appear to be available digitally (websites, social media, blogs, articles, podcasts, webinars), however, this can also be problematic. The volume of information and sources available online often presents conflicting opinions or data as not all online information is verified and evidence-based. Another consideration is figuring out if the information provided is current. Much of it is not, and it can be overwhelming to sort through such a large number of resources and determine if the information provided is legitimate and reliable. Moreover, many digital resources may not be free from bias. A number of cerebral palsy related websites that show up frequently on internet search are constructed by personal injury legal teams and serve as a referral entry for their business.

Situation-specific and age-appropriate educational content play a role in health literacy in the context of chronic conditions like cerebral palsy. It is important to take into consideration that certain topics play a more prominent role at different time points in a person’s life. We aim to provide health care providers a current annotated list of reliable online resources for stakeholders and parents with the goal of supporting health literacy and therefore improving shared decision making and reducing disparity.

To highlight this, we will give three examples of time periods that have different concerns: 1. Initial diagnosis and early intervention, 2. The childhood years when treatment options, communication and school considerations become a priority, and 3. Transition to adulthood and beyond including building independence, self-sufficiency, adult medical care and relationships.

With these three time points in mind, this article will provide and describe reliable online resources that professionals can use during their clinical encounters to assist their patients and families learn more and develop health literacy throughout their lives (Table 1). The resources provided were curated by a search by the authors of this article and collectively discussed prior to inclusion. During the discussion, the decision was made to exclude websites created by specific healthcare institutions, sites with legal affiliations, published books and individual bloggers. Since the resources provided may have considerable overlap in knowledge and critical time periods, each resource will be described in detail the first time it is mentioned and subsequent references to this source will serve to highlight the resource’s age-specific content. This may not be an all-inclusive list, however, it is a starting point in discussion with families and individuals with cerebral palsy. 

Background

What is Health Literacy?

The Patient Protection and Affordable Care Act of 2010, Title V, defines health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions [5]. The U.S. Department of Health and Human Services (HHS) updated the definition to include personal health literacy emphasizing the ability to use health information rather than just understand it, with a focus on the ability to make well-informed decisions rather than simply appropriate ones [6].

Health literacy extends beyond patients and their families. It is necessary for anyone who interacts with the medical community. Health literacy involves an individual’s cognitive ability to comprehend and process medical information that is presented, as well as their social ability to articulate what is understood and their personal preferences. Another important factor is having the skills and motivation to be able to seek out and critically judge health information available in order to promote and maintain good health [7].

Health literacy forms the foundation on which shared decision making is built upon. In order for effective communication to occur, health care providers, patients and stakeholders must have a similar understanding of the terms being used in the conversation. Without this common ground, the discussion will be limited in regards to furthering the understanding of the disease process, prognosis, risk-reduction strategies, treatment options, and goals of treatment [8].  

What Role Do Health Disparities Play?

It has long been established that health literacy promotes equity in the health care setting. It is important to note that a lack of health literacy might explain some of the variation in health disparities that would be otherwise linked to other socioeconomic factors, such as education or income for example [9, 10]. Health disparities are differences in health that occur due to social, economic, or environmental disadvantages. Groups that are more likely to fall victim to discrimination or segregation often face increased difficulties in preserving and improving their health [11].

Indeed, a lack of health literacy has been found to be associated with many of the drivers of health disparities including the incidence and prevalence of cerebral palsy. However, continued research is needed in this area to further assess linkages and risk factors [12].

Professionals have a responsibility to understand available resources and to direct those affected by cerebral palsy, and their caregivers, if appropriate, to reliable educational resources that serve the purpose of building the bridge to health literacy and shared decision-making.

In the instance of a lifelong condition such as cerebral palsy, disparities may occur in the form of diagnosis timing, prognosis and severity, access to therapies, home affordances, access to specialty providers, recreational activities, parental ability to take time off work for appointments, and ability to acquire certain medical equipment.

Health care professionals need to be cognizant of the level of understanding in each patient, family unit, and stakeholder, and take into account alternative perspectives, cultural considerations and any health disparities that may be present. It is the duty of medical professionals to continually re-evaluate and try to understand the unique beliefs and attitudes of patient and caregivers towards certain topics, as these beliefs may not be the same as their own.

The First Step in Cerebral Palsy Health Literacy: Early Diagnosis

For children with developmental disabilities, there is an increasing realization that diagnosis and intervention should start as early as possible. This may be even more important for those with cerebral palsy, as the etiology for cerebral palsy is multifactorial and there may be specific neurocritical interventions that enhance neuroplasticity and outcomes. An international consensus for the diagnosis of cerebral palsy was recently reached, making early diagnosis at less than 12 months of age not only achievable, but also desirable [13]. 

This represents a significant change regarding the timeframe of when cerebral palsy has been historically diagnosed and presents a new opportunity for family and caregiver education and early information dissemination.

Diagnosing cerebral palsy as early as possible has profound consequences, positively impacting many aspects of patient care. One of these benefits is the ability to increase caregiver empowerment and involvement early in the process of care [14]. Each case is unique however, and it is important to understand that each family may require different time periods to process the information surrounding a cerebral palsy diagnosis. As such, the information provided to the patient’s and families should be easily accessible at their own pace.

Current best practice in the initial discussion of a cerebral palsy diagnosis includes providing patients and family members with helpful information as well as providing the family with a plan [15, 16]. Reliable resources should be provided during this initial conversation on their diagnosis to enhance the patient’s and family’s understanding of their condition. Often, the primary concern at the point of diagnosis centers on understanding the disease and early treatment options. Increased knowledge arising from up to date and reliable educational materials has the potential to help increase patient confidence, reduce fear and confusion, and support the therapeutic bond with their clinicians and providers [17].

Early Cerebral Palsy Diagnosis Information Resources (Table 1)

The Cerebral Palsy Foundation (CPF) CPF is the largest cerebral palsy-specific nonprofit foundation in the United States supporting education and providing information for families with children/adults with cerebral palsy, as well as stakeholders. The Cerebral Palsy Foundation was created 61 years ago originally as the United Cerebral Palsy Research and Educational Foundation and is known today as the Cerebral Palsy Foundation. Their mission is to be a catalyst for creating positive change for people with cerebral palsy and to define, address, and help accelerate advances for moments of impact – the times at which interventions and insights, if properly implemented, have the power to change lives. [18] Information platforms available include:

CP Channel A Free Downloadable Mobile App for iOS and Android Devices. CP Channel puts hundreds of expert videos and more at the fingertips of anyone with a mobile device. Many of these videos focus on the topic of early cerebral palsy diagnosis and related intervention information.

CPResource.org Developed in 2020 by leading experts and families featuring reliable, to date information and resources through the lifespan including fact sheets, expert videos, and family stories about early cerebral palsy diagnosis, early intervention information, research, education, educational town halls, adaptive product information, curated content for all ages, and much more. CPResource.org is designed around the concept of the International Classification of Functioning, Disability, and Health (ICF)  system addressing human functioning, providing a standard language and framework that describes how people with a health condition function in their daily lives.  Links to cerebral palsy clinical trials and research can also be found on this site.

Centers for Disease Control and Prevention (CDC) The CDC features general information about a variety of developmental disabilities, including cerebral palsy. The CDC also provides links to early intervention programs by state, statistics, and family stories [19].

CP ToolKit The Cerebral Palsy Tool Kit is accessed through the Cerebral Palsy Research Network and was created to help families sort through the initial emotions in response to a child or loved one receiving a diagnosis of cerebral palsy and to answer questions and concerns related to cerebral palsy [20].
The CP ToolKit is also available in Spanish.

Available for free via download at www.cprn.org and for purchase in print for $12.69 on Amazon as of January 2021.

International Alliance for Pediatric Stroke (IAPS) The International Alliance for Pediatric Stroke unites pediatric stroke communities worldwide to share vetted medical information, bringing education, awareness, and research together to help these children and their families. The IAPS website includes information, resources, fact sheets, videos, stories, and more. A newly launched (2021) Support Network connects families of children who have had strokes with peers who can help navigate the journey after stroke [21].

Children’s Hemiplegia and Stroke Association (CHASA) A grassroots non-profit organization dedicated to improving the quality of life for those who developed hemiplegia during childhood. They provide specific information on the hemiplegic subtype of cerebral palsy [22].

National Institute of Neurological Disorders and Stroke (NINDS) A division within the National Institutes of Health (NIH) that seeks fundamental knowledge about the brain and nervous system to reduce the burden of neurological disease. They provide a limited overview of the definition of cerebral palsy, treatment options, resources, and research projects [23].

Also available in Spanish.

Growing into the Childhood Years

Childhood is the time for finding one’s place in the world and establishing a sense of self. Children of all abilities want to fit in and make friends. Given this, having a chronic diagnosis can make building these relationships and developing independence more difficult. Children with chronic conditions like cerebral palsy need to find a way to understand their own diagnosis and learn to advocate for themselves with their peers, teachers, and medical professionals as they mature.

Additionally, all children should have opportunities to find ways to explore their interests, participate, and interact with the world, be it through sports, recreation, or other extra-curricular pursuits. Becoming active not only improves motor function and physical health, but it also encourages participation in community programs, school sports, and other events that help an individual with disabilities expand physical and cognitive skills. Research has shown improvement in children’s speech, self-esteem, and emotional well-being through becoming more active
[24]. Becoming engaged in their own health early on sets the child up to continue to actively be involved in their medical care through their lives while promoting self-advocacy and a higher quality of life.

As a child with cerebral palsy grows, the focus shifts from trying to understand the diagnosis to looking for ways to maximize outcome and address any potential limitations that may come up through physical limitations, growth spurts, social considerations, and school-related issues. There is no standard therapy or treatment that works for every individual with cerebral palsy. Once the diagnosis is made, and the type of cerebral palsy is determined, a team of health care professionals will work with a child and family/caregivers to develop a plan to maximize the child’s participation and quality of life.

In addition to different treatment options, an additional level of complexity is added when the wide practice variations between practitioners are taken into consideration. Moreover, specific treatments may only be available in certain parts of a country, or only certain countries. Thus, not everyone has access to the same treatment options. Caregivers often find themselves in the position of not fully understanding what the best-evidence for treatment is. Access to reliable information, knowledgeable providers, and shared decision making is critical to successfully address questions and issues.

Best evidence and treatment standards of care for cerebral palsy that families and caregivers can easily access have not been easy to find in one place. It is challenging for families and caregivers to understand the treatment options and what might be available to them. 
 

Resources for the Childhood Years (Table 1)

Cerebral Palsy Research Network (CPRN) A 28 multisite group of doctors, therapists, epidemiologists, and patient advocates collaborating to empower, improve treatments, and improve outcomes for people with cerebral palsy through research, education, and community programming. They facilitate cooperative research and use rigorous data collection practices to plan and execute a learning health network, clinical trials, and quality improvement protocols. CPRN’s recent merger with CPNow has created a platform for educational materials such as the CP Tool Kit (see above) and resources for well-being [20].

CPResource.org (Cerebral Palsy Foundation) Includes a variety of information and resources for the school-age child with cerebral palsy and their families, including information about education considerations, treatment options, growth/nutrition, sleep, activity and movement. School inclusion through the “Just Say Hi” initiative.

ClinicalTrials.gov A database of privately and publicly funded clinical studies conducted around the world, including studies about cerebral palsy. The majority of cerebral palsy clinical studies are targeted towards school-age children with a smaller number of trials focused on younger children and adults.

The American Academy for Cerebral Palsy & Developmental Medicine (AACPDM) An academy of health professionals dedicated to providing multidisciplinary scientific education and promoting excellence in research and services for the benefit of people with and at risk for cerebral palsy and other childhood-onset disabilities. The AACPDM website can be searched by families and caregivers in order to find clinicians with a focus on cerebral palsy. The website also features a variety of Fact Sheets providers can share with their patients and families on topics including executive function, adaptive physical activity, fatigue, sialorrhea, walking over the lifespan, and other topics [25].

Community Council Made up of a variety of families, individuals with cerebral palsy, and stakeholders who conduct a no cost family forum during the AACPDM annual meeting and serves as a resource for families and caregivers.

Individuals with Disabilities Education Act (IDEA)  The Individuals with Disabilities Education Act is a law that makes available a free appropriate public education to eligible children with disabilities throughout the US and ensures special education and related services to those children. The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 7.5 million eligible infants, toddlers, children, and youth with disabilities. This website has a wide variety of information and resources for families.

SWIFT Schools SWIFT is a national technical assistance center that builds whole system—state, district, school, and community—capacity to provide academic and behavioral support to improve outcomes for all students.

International Resources

CanChild (Canada) An academic network of international scientists who conduct applied clinical and health services research. CanChild's research efforts focus on children and youth with disabilities including cerebral palsy and their families. As a world leader in the field, CanChild strives to generate innovative knowledge and translate research in an accessible way that is relevant and meaningful to those who need it most: families and service providers [26].

Cerebral Palsy Alliance (Australia) Cerebral Palsy Alliance provides family-centered therapies, life skills programs, equipment and support for people and their families living with cerebral palsy and other neurological and physical disabilities in Australia. Additionally, Cerebral Palsy Alliance has dedicated millions of dollars to the study and implementation of cerebral palsy prevention, and advancement of treatments for those living with cerebral palsy including a consolidated international roadmap for cerebral palsy research [27].

Federacion Aspace (Spain) 
A movement of people, families, professionals, and entities in Spain dedicated to providing adequate services and support in each life stage of people with cerebral palsy, regardless of the degree of autonomy. This is a caregiver resource that explains what cerebral palsy is, gives guidelines for daily living with a child with cerebral palsy, family dynamics, and potential benefits [28].

Sports and Recreation

Cerebral Palsy International Sports & Recreation Association (CPISRA) The only global adaptive sport and recreation organization solely focused on people with cerebral palsy and related conditions. CPISRA provides and promotes opportunities for recreational sport and activity, develops grassroots adaptive sport and provides platforms for regional and international competitive and elite sport. CPISRA is also passionate about promoting sport for recreation, well-being and enjoyment for individuals with cerebral palsy [29].

MoveUnited Provides national leadership and opportunities for individuals with disabilities to develop independence, confidence, and fitness through participation in community sports, competition, recreation, high performance sport and educational programs. Move United annually serves 100,000 youth and adults with disabilities through a nationwide network of over 170 community-based chapters in more than 40 states in the US [30].

National Center on Health, Physical Activity and Disability (NCHPAD) A public health practice and resource center focused on health promotion for people with disabilities through increased participation in all types of physical and social activities, including fitness and aquatic activities, recreational and sports programs, adaptive equipment usage, and more [31].

Adapted Sports Journal Digest (within AACPDM) Brief, easy-to-read review of the most recent research pertaining to adaptive sports, recreation, and physical activity for individuals with disabilities across the lifespan [25].

Podcasts & More about Cerebral Palsy

Let’s Talk CP Connecting the cerebral palsy community one podcast at a time –this Cerebral Palsy Foundation podcast series brings education, conversation, support and much more on a variety of topics to the cerebral palsy community by interviewing clinicians, researchers, families and people with cerebral palsy [18].

Cerebral Palsy Health Conversations with experts about issues related to cerebral palsy that affect health, fitness, function and participation [18].

Terapia Y Ejericio Fisico and PC Crece Developmental Medicine and Child Neurology (DMCNTopics include the importance of exercise and physical activity, developmental trajectories of children with cerebral palsy, and aging of children with cerebral palsy.

New Horizons Cerebral Palsy Virtual Town Halls

These multi-disciplinary virtual panel discussions feature leading clinicians, researchers and therapists from across the US highlight the latest updates in care of children with cerebral palsy.
 

Transition to Adulthood and Beyond

In the past, cerebral palsy informational resources focused primarily on children and their parents. Since most people with cerebral palsy have a near-normal lifespan, adult resources are equally important as is further research on the aging consequences of cerebral palsy [32]. Recent trends in clinical care and research emphasize a longitudinal model of care which takes into consideration the priorities of adults affected by cerebral palsy [33, 34].

The journey of preparing children with cerebral palsy for the transition to adulthood generally starts around age fourteen to ensure they have ample time to gain the confidence and skills needed. Maximizing independence, to the degree possible, becomes the major focus of this time period. Children with cerebral palsy should be encouraged to take ownership of their medical needs as early as possible with increased emphasis during the teen years.

During this time, a variety of important issues should be addressed including sexuality, reproductive health, social relationships, well-being, and mental health. Teens with cerebral palsy should be supplied with critical information necessary for future planning, post-secondary education, job training/ employment, and independent living.

Resources for Transitioning to Adulthood (Table 1)

AACPDM Fact sheets for adults with cerebral palsy on fitness and primary care available [25].

CP Channel (CPF) An accessible tool that can be used to teach teens basic knowledge concerning cerebral palsy. It can also be used as a useful starting point for discussion of practical matters related to the transition to adult providers [18].

CPResource Section on adolescence-adults: Explore information from experts, stories from people with cerebral palsy who have experienced adolescence and adulthood [18].

MyCP (CPRN) MyCerebralPalsy.org is a resource for the cerebral palsy community to participate in research and discuss research priorities in cerebral palsy. MyCP connects to the CPRN Community Registry.

Child Neurology Foundation (CNF) Child Neurology Foundation has resources available tailored to families with neurological conditions including cerebral palsy, and features helpful information about the transition years. 

Conclusion

Access to accurate and reliable information is an important step to optimize outcomes across the lifespan, improve health literacy, and build the foundation for collaboration between provider and patient during the decision-making process. Stakeholders with an investment in cerebral palsy also need access to the same resources to find the common ground in shared decision making. These sources of educational information about cerebral palsy should be easy to navigate and reflect the various issues faced in the different stages of a person’s life with cerebral palsy through adulthood.

With this in mind, this article serves as a guide for reliable cerebral palsy stakeholder resources describing the foundational merits of each resource, and providing easy access to trusted information for providers, families, and caregivers. From the physician point of view, the more well-versed in healthcare knowledge the patient or caregiver is, the more engaged they are likely to be in goal-setting and shared decision making.  

We encourage you to read available cerebral palsy educational information and to critically evaluate all of the sources that your patients and families bring to your attention. In an age of misinformation, providers have the duty to independently verify the information as well as question the information within the source. An honest discussion with the family or individual can follow your appraisal of these new potential resources. A partnership in navigating resources will improve trust, and most importantly, empower both the families of a child with cerebral palsy and the individual with cerebral palsy over their lifetime.

Acknowledgements

Dr. Veronica Schiariti and Dr. Mauricio Delgado contributed to the Spanish resources.

Table 1: Resource List

Resource Name

Intended audience

Access

 

Websites

American Academy for Cerebral Palsy and Developmental Medicine

(AACPDM)

Clinicians, stakeholders

https://www.aacpdm.org

Community Forum https://www.aacpdm.org/meetings/2021/community-forum

Center for Disease Control

(CDC)

Families and the community

cdc.gov/ncbddd/cp/index.html

Cerebral Palsy Foundation

Families, stakeholders

www.yourcpf.org

“Just say hi” 

https://www.yourcpf.org/just-say-hi-in-schools/

Adults with cerebral palsy, families, Providers

Cerebral Palsy Resource cpresource.org

Childhood specific
cpresource.org/topic/school-education

Adults
cpresource.org/topic/adolescence-adults

Virtual Town Halls 

cpresource.org/topic/treatment-options/new-horizons-virtual-townhall-series
 

Cerebral Palsy Research Network (CPRN)

Clinicians, stakeholders, families

www.cprn.org

Cerebral Palsy Toolkit (Parents)

https://cpnowfoundation.org/wp/wp-content/uploads/2015/11/Toolkit-Preview.pdf

Children’s Hemiplegia And Stroke Association

(CHASA)

 

Families

https://chasa.org/medical/cerebral-palsy/

Child Neurology Foundation

Families

https://www.childneurologyfoundation.org/transitions/

Clinical Trials

Families, adult with cerebral palsy, researchers

https://www.clinicaltrials.gov/ct2/results?recrs=ab&cond=Cerebral+Palsy&term=&cntry=US&state=&city=&dist=

International Alliance for Pediatric Stroke

Families

https://iapediatricstroke.org/

NINDS

Clinicians, Families, Community

https://www.ninds.nih.gov/Disorders/All-Disorders/Cerebral-Palsy-Information-Page

Sports

Cerebral Palsy International Sports & Recreation Association

Children and adults with cerebral palsy

www.cpisra.org

Move United

Children and adults with cerebral palsy

https://www.moveunitedsport.org

National Center on Health, Physical Activity and Disability (NCHPAD)

Adults with cerebral palsy, community stakeholders, educators

https://www.nchpad.org

Mobile Apps

Cerebral Palsy Channel

(CPR)

Teens/adults with cerebral palsy, families, stakeholders

Free Mobile App

Download for free on any iOS or Android device

Podcasts

Let’s Talk CP

(CPS)

Families, Caregivers

https://cpresource.org/topic/cerebral-palsy-facts/lets-talk-cp-were-together

iTunes

iHeart Radio

Spotify

Pandora

 

Cerebral Palsy Health

Families, caregivers

https://cpresource.org/topic/cerebral-palsy-facts/cerebral-palsy-health-jennifer-lyman

DMCN - PC Crece

Families, clinicians

https://youtu.be/LvyvadD01X4

DMCN- Terapia Y Ejerico Fisico

Families

https://youtu.be/vzVrkI8Rkac

International Resources

Can Child

(Canada)

Clinicians, families, adults with cerebral palsy, stakeholders

canchild.ca/en/diagnoses/cerebral-palsy

Cerebral Palsy Alliance

Child and adult with cerebral palsy, families, stakeholders

https://cerebralpalsy.org.au/our-research/about-cerebral-palsy

Federacion Aspace
(Spain)

Families

https://aspacegranada.org/descargas/MI_BEBE_TIENE_PARALISIS_CEREBRAL_ASPACE_GRANADA.pdf
https://aspace.org/assets/uploads/publicaciones/GUIA_DE_PADRES.pdf

Additional resources on Development and Developmental Disabilities

Easter Seals

Families

https://www.easterseals.com/

Individuals with Disabilities Education Act

(IDEA)

Families

https://sites.ed.gov/idea/?src=policy-page

March of Dimes

Families

https://www.marchofdimes.org/index.aspx

Pathways.org

Families

 

pathways.org

SWIFT Schools

Families

https://swiftschools.org/ 

United Cerebral Palsy

Families

https://ucp.org/

 

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