Information for Parents and Families

Too often we forget that cerebral palsy impacts both the affected individual — but also their family. For parents and families caring for a child with cerebral palsy, every aspect of life change to accomodate the needs of the individual. The publications listed below provide insight into this seemingly overlooked topic.

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Books about Cerebral Palsy Treatment for Parents and Families

All The Basics Of Cerebral Palsy To Help You Cope – Discover the Symptoms, Risk Factors, Treatments, Therapies and Special Section For Parents

Published October 11, 2011
More information at Amazon.com


Physiotherapy and Occupational Therapy for People with Cerebral Palsy: A Problem-Based Approach to Assessment and Management

Published February 16, 2010 by Mac Keith Press
More information at Amazon.com


Getting the Therapy, Benefits, and Resources Your Child Needs: A Gude for Parents of Children with Cerebral Palsy and Brain Injury

Published January 1, 2009 by Lighthouse Media Publishing
More information at Amazon.com


Finnie’s Handling the Young Child with Cerebral Palsy at Home

Published December 8, 2008 by Butterworth-Heinemann
More information at Amazon.com


Keys to Parenting a Child With Cerebral Palsy (Barron’s Parenting Keys)

Published August 1, 2007 by Barron's Educational Series
More information at Amazon.com


Children With Cerebral Palsy: A Manual for Therapists, Parents and Community Workers

Published February 21, 2007 by Sage Publications Pvt. Ltd
More information at Amazon.com


Teaching Motor Skills to Children With Cerebral Palsy And Similar Movement Disorders: A Guide for Parents And Professionals

Published July 19, 2006 by Woodbine House
More information at Amazon.com


Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)

Published May 4, 2006 by The Johns Hopkins University Press; 2nd edition
More information at Amazon.com


The Official Parent’s Sourcebook on Cerebral Palsy: A Revised and Updated Directory for the Internet Age

Published September 16, 2002 by ICON Health Publications
More information at Amazon.com


Uncommon Voyage: Parenting a Special Needs Child

Published September 21, 2001 by North Atlantic Books
More information at Amazon.com


My Perfect Son Has Cerebral Palsy: A Mother’s Guide of Helpful Hints

Published February 1, 2001 by 1st Book Library
More information at Amazon.com


Parents As Care Managers: The Experiences of Those Caring for Young Children With Cerebral Palsy

Published June 1, 1999 by Ashgate Pub Ltd
More information at Amazon.com


Children with Cerebral Palsy: A Parent’s Guide

Published January 1, 1998 by Woodbine House
More information at Amazon.com


Handling the Young Child with Cerebral Palsy at Home

Published August 20, 1997 by Butterworth-Heinemann
More information at Amazon.com


Step by Step: Real Life Experiences With Cerebral Palsy

Published August 19, 1995 by Rose Pub
More information at Amazon.com


Spastic cerebral palsy: A parents’ guide to physical treatment (Spastics Society. Parents handbook)

Published January 1, 1975 by Spastics Society
More information at Amazon.com


Cerebral Palsy in Children and its Treatment

Published January 1, 1963 by The MacMillan Co
More information at Amazon.com

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Publications about Cerebral Palsy Treatment for Parents and Families

Becoming and staying physically active in adolescents with cerebral palsy: protocol of a qualitative study of facilitators and barriers to physical activity

Published: January 7, 2011 by BMC Pediatrics, Volume 11
Adolescents with cerebral palsy (CP) show a reduced physical activity (PA). Currently there are no interventions for adolescents with CP in this critical life phase that optimise and maintain the individuals’ physical activity in the long term.

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Studies and Dissertations about Cerebral Palsy Treatment for Parents and Families

An Evaluation of Group Stepping Stones Triple P for Parents of Children with Developmental Disabilities

Published November 1, 2009 by Roux, Gemma
The primary focus of this research project was an evaluation of the Group Stepping Stones Triple P parenting program for parents of a child with a disability.


The validation of a task-specific measure of parenting self-efficacy for use with mothers of young children

Published September 1, 2009 by Harty, Michal
This research develops and validates a task-specific parenting self-efficacy measure focussing on the following domains: showing affection and empathy, engaging in play, facilitating routines, establishing discipline strategies, providing appropriate learning and development activities, and promoting communication interaction.


A Case Study Investigation of the Physical Activity Levels of Disabled Students at a Small Missoula, Montana Middle School

Published August 14, 2009 by Bond, Chelsea Marie
One of the major goals for the nation, described in the Surgeon General’s Report Healthy People 2010, is to promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S.


Theorizing Information and Communication Technologies for Parents of Children with Developmental Disabilities

Published June 19, 2009 by Campbell, Louise Marie
Studying the challenges faced by families with children who have developmental disabilities has produced a considerable body of literature. Much of this literature focuses on the families’ needs for information and social support.


Access to Dental Care for Persons with Disabilities in Ontario: A Focus on Persons with Developmental Disabilities

Published February 24, 2009 by Koneru, Anjani
This study was undertaken to determine if persons with disabilities encounter difficulties in accessing dental care in Ontario, to identify barriers to accessing dental care and to determine if persons with disabilities and caregivers value oral health.


An Evaluation of the Use of Eye Gaze to Measure Preference for Individuals with Multiple Disabilities

Published January 1, 2009 by Wheeler, Geoffrey M.
This study used duration of eye gaze toward a stimulus to measure preference. The study took place in two schools for students with mental retardation and developmental disabilities.


Examining Individual and Neighborhood-Level Risk Factors for Delivering Preterm

Published by Dooley, Pamela A.
This dissertation examines the relationship between several neighborhood and individual-level factors and the probability of delivering a preterm infant. Infants born prematurely, or at less than 37 weeks of gestation, have a greater risk of long-term developmental disabilities, such as cerebral palsy, than infants born at full term.


Investigation of Unintentional Movement in People with Cerebral Palsy to Improve Computer Target Acquisition

Published July 22, 2008 by Sibenaller, Sara Marie
People with Cerebral Palsy (CP) have difficulty using computer pointing devices due to unintentional movement in their upper extremities. Fifty percent of people with CP have impaired arm-hand function which limits their ability to interface with pointing devices and effectively control cursor movement on the computer screen. This thesis involves two studies which utilize an Isometric Joystick in order to access the computer and complete target acquisition tasks.


Caregiver Strain Among African American and Caucasian Family Members Caring for Children with Emotional and Behavioral Problems: The Role of Race

Published May 8, 2008 by Taylor, Kelly D.
Caregiver strain is a complex phenomenon with the potential to have a deleterious effect on caregivers’ ability to perform their caregiving duties. Previous research has suggests that differences in race influence caregivers’ reported level of strain, with African Americans tending to report lower levels of strain than their Caucasian counterpart.


Music therapy for young children who have special needs : the music therapy experience from the perspectives of carers and professionals

Published January 1, 2008 by Chiang, Jenny Yu Kuan
This project aims to investigate how carers and other professionals perceive the music therapy process over time. Music therapy has been used to address a wide range of diagnoses and developmental issues of young children.


The Experience of Being a Taiwanese Mother of a Child with Cerebral Palsy

Published by Huang, Yu-Ping
Cerebral palsy (CP) is the most common cause of physical disability in children. Disabilities are associated with walking, sitting and hand function. The nature and severity of impairments varies but in all cases the demands placed upon caregivers is significant.


Never-ending caring : the experiences of caring for a child with cerebral palsy : a thesis presented in fulfillment of the requirements for the degree of Doctor of Philosophy in Nursing at Massey University, Palmerston North, New Zealand

Published by Klankaradi, Kuephan
Cerebral palsy is one of the chronic conditions which have become a serious health burden worldwide. Consequently, this health burden involves healthcare as a whole, regardless of whether the focus is on the macro or micro system.


"Time to care": relationship between time spent caring for pre-school children with developmental delays and psychological, social and physical well-being of parents

Published by Crettenden, Angela D.
Advances in medical technologies and changing philosophies of health care have led to a rapid increase in home-based care for children with disabilities. While there are cost savings for health services if children are cared for at home there are extensive additional demands on the time and resources of parents, particularly primary caregivers, who are usually mothers.


Investigation of the effect of intrauterine inflammation and infection on fetal brain injury using human and animal models

Published by Patrick, Lindsay Alexandra Laurentia
In recent years, increased focus has been placed on the role of intrauterine infection and inflammation in the pathogenesis of fetal brain injury leading to neurodevelopmental disorders such as cerebral palsy.


Quantification of Muscle Fatigue in Cerebral Palsy and Its Relationship to Impairments and Function

Published November 13, 2006 by Moreau, Noelle G.
Three experiments were designed to explore the measurement of muscle fatigue in people with cerebral palsy (CP).


Participation and disability : a study of participation in school for children and youth with disabilities

Published September 8, 2006 by Eriksson, Lilly
Participation in everyday life is vital to a child’s development and well-being and is a basic human right. One definition of participation is engagement in life areas.


A Qualitative Analysis of the Experiences and Perspectives of Family Child Care Providers Who Care for Young Children with Disabilities

Published August 10, 2006 by Wayne, Tracey Simone
Increases in the number of parents in the paid labor force and welfare reform have resulted in more families requiring non-parental child care. Most often this care is provided in environments outside of the child’s own home.


Hand functioning in children with cerebral palsy / Le fonctionnement de la main chez les enfants infirmes moteurs d’origine cérébrale

Published February 13, 2006 by Arnould, Carlyne
The purpose of the present work was to study hand impairments and manual ability in children with cerebral palsy (CP) as well as to clarify their relationship.


Phonological representations, phonological awareness, and print decoding ability in children with moderate to severe speech impairment

Published January 1, 2006 by Sutherland, Dean Edward
The development of reading competency is one of the most significant pedagogical achievements during the first few years of schooling. Although most children learn to read successfully when exposed to reading instruction, up to 18% of children experience significant reading difficulty (Shaywitz, 1998).


Maternal stress and coping when a child is fed enterally

Published by Baack, Cathryn J.
While there is extensive literature on parental stress associated with parenting a child with special health needs, few researchers have looked specifically at the stress associated with parenting a child fed enterally.


Attachment theory and the adjustment to school for young children with special needs

Published July 1, 2005 by Schischka, Janice
There is increasing evidence that a positive start to school sets the child up for continued positive educational experiences and future life opportunities(Dockett & Perry, 2007). In an inclusive era, it is important to investigate the processes that promote the success of inclusion.


Environmental Factors that Influence Telecommunications Use by Adolescents with Cerebral Palsy

Published by Carpenter, Sonja Maria
Social participation is essential to well-being for adolescents with and without disabilities. Adolescents with a disability, however, often have fewer friendships and experience social isolation compared to their peers without disability. Telecommunications play a vital role in facilitating social participation for adolescents yet those with a disability experience reduced access. Based on the World Health Organisation’s framework of the International Classification of Functioning, Disability and Health (ICF) this study aimed to identify environmental factors (barriers and facilitators) that impact on participation in telecommunication use, as perceived by adolescents with cerebral palsy and their communication partners.


Supra-Postural Task Performance in Children with Cerebral Palsy: The Importance of Functional Context

Published June 30, 2005 by Schmit, Jennifer Marie
Postural instability is a classical characteristic of cerebral palsy (CP), but it has not been examined in the during simultaneous supra-postural activity.


Occupations in Parenting Children with Developmental Disabilities

Published June 29, 2005 by Hanna, Karen Janelle
This qualitative study investigated the experiences of parents of children with developmental disabilities living in a regional community on the New South Wales coast.


Fathers of Children with Educational Disabilities: The Role of Stress in Life Satisfaction

Published June 21, 2005 by Strachan, Jr., John Weir
Investigating the possible complex role of paternal stress in life satisfaction is essential because of the increasing importance of the role of fathers in our society. There are many difficulties and demands that face not only fathers of typically developing children, but also disabled children in particular.


Efficacy of lycra arm splints : an international classification of functioning disability and health approach

Published January 1, 2005 by Elliott, Catherine
This thesis consists of five experimental studies from seven data collection periods. The first two studies quantitatively analyse children with and without cerebral palsy using upper limb three dimensional (3D) motion analysis.


The Lived Experience of Being a Mother of a Child with Severe Cerebral Palsy

Published by Moore, Linda A.
This qualitative study describes the lived experience of five mothers who care for their child with severe cerebral palsy. The phenomenon was elicited utilizing Roy (Roy & Andrews, 1999) adaptation model of nursing as the theoretical framework and phenomenology implementing Colaizzi’s (1978) method of data analysis


Collection Development in School and Public Libraries: An Analysis of Health Related Topics

Published April 12, 2004 by Clancy, Colleen M.
The selection of resources is one of a librarian’s most important responsibilities. It impacts the level of access to information that patrons have. The selection process becomes more complex when the library’s mission supports a specific population, children and young adults, with distinct needs and limitations.


Teaching imitation skills to preschool children with severe disabilities: The effects of embedding constant time delay within a small group activity

Published January 1, 2003 by Valk, Jennie Elise
Children and adults acquire countless skills through the strategy of imitation. However, some children with disabilities do not demonstrate the ability to imitate in the course of their natural development.


A Game of Cat and Mouse: the Bullying and Teasing Experiences of Children with Cerebral Palsy

Published January 1, 2001 by Tentoglou, Nikie
An exploratory qualitative study was undertaken to determine how ten children, aged 8 to 12, with a diagnosis of Cerebral Palsy describe and experience peer teasing and bullying at school.


Early Home-Based Interventions with Developmentally Delayed Young Children

Published July 1, 1999 by Chippett, Darryl C.
Assessment in early intervention refers to the systematic collection of information about children, families, and environments to assist in making decisions regarding identification, screening, eligibility, program planning, monitoring, and evaluation.


Implications of constructmsm for the counselling of parents of children labelled with disabilities

Published July 1, 1998 by Goddard, Jay K.
This study explores the theoretical implications of a deconstructed view of disability to the counselling and support of children labelled with disabilities.


The effect of neurodevelopmental treatment on gross motor function and ambulation in children with cerebral palsy

Published July 1, 1997 by King, Carolyn Ann
The aim of Neurodevelopmental Treatment (NDT) is to assist individuais with
neurological impairment achieve their highest level of functional ability.

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Web Resources for Cerebral Palsy Treatment for Parents and Families

My Angel Has Cerebral Palsy
A blog about raising a child with cerebral palsy as a single parent.


Friends of disbled adults and children
FODAC provides refurbished equipment and services for disabled adults and children to improve their overall quality of life.


Special Needs Financial Planning
Providing professional financial planning through personal experience.


ERIC (Education and Resources for Improving Childhood Continence)
ERIC is the only charity it the UK that provides children, young people and their families with information and support on childhood continence problems which include daytime wetting, bed wetting and constipation and soiling.  The Helpline is available on 0845 370 8008 or email info@eric.org.uk .  Information, a web shop and free leaflets are available from www.eric.org.uk.


Spinal Cord Injury Information Pages
Quadriplegic and caregiver resources for those living with a spinal cord injury or other disabling injuries or disease of the spine.


Spinal Cord Injury Information Pages
Quadriplegic and caregiver resources for those living with a spinal cord injury or other disabling injuries or disease of the spine.


LL medico
Unique Incontinence Products


Mountainside Medical Equipment
Quality medical supplies at competitive prices


One place for special needs
One Place for Special Needs is also a place that special needs families can call their own. “No one should have to feel alone when faced with caring for someone with a disability,” Villarreal said. “Together we can build a community where everyone understands what it is like to be a special needs family and reach out to help one another.”


Your Special Needs Store
When it comes to disability aids healthcare products, we are your experts.  Take a look around our site and find the disability living aids that best suits your style and needs.


ParentKid.com
Parent Directory related links to online parenting resources includes parenting advice, family activities, parenting information and parent experts, pregnancy, kids, adoption, family issues, parent’s tip, child care, health, literacy, family life, adolescence, and learning activities


Net Health Book
This is a free Internet based health book with information about most major medical diseases, their symptoms, diagnoses, and treatments, all in simple, everyday language.


Mental Health Abuse
Exposing the crimes of mental health practitioners


ibis-birthdefects.org
The international coordinator of OMNI-Net is Dr. W. Wertelecki, M.D., who is a Pediatrician and Medical Geneticist. In Eastern Europe related matters, the Medical Director is Dr. L. Yevtushok, M.D., a Medical Geneticist. The Webmaster is R. Ameziane M.S., and Associate Webmaster is Mr. S. Lapchenko.


HealthBegin.com
HealthBegin.com is a leading health website including sexually transmitted diseases, stroke health information, beauty, nutrition, physiology, alternative medicine,hospital, immunization, medicare, medicaid, pregnancy, physicians, dentists.


MyChild™ is a call center that provides information, resources, expert referrals, and inspiration to those touched by cerebral palsy and Erb’s palsy.
MyChild™ is a call center that provides information, resources, expert referrals, and inspiration to those touched by cerebral palsy and Erb’s palsy. 1-800-MyChild (1-(800) 692-4453).


Healthy Directory, Healthy Living Information, Physical Activity Guide
DirectoryHealthy.com provides useful information on health, fitness, alternative medicine, animal health, dentistry, fitness, health insurance, long term care, nutrition, pharmacy, weight loss & yoga.


Cerebral Palsy World
Created by Brandon Fisher, a young man with cerebral palsy, Brandon has assembled a variety of informative resources for both people with CP and those simply seeking more information on this condition.


DirectoryKid.com
DirectoryKid.com – Kids Directory which contain links all about kid, children, parent, and family, such as baby apparel, children product, toilet traning, baby equipment, feeding, education, kid safe, health, entertainment and much more.


Cerebral Palsy Directory
This is a 58-category directory of CP resources. Use the tree navigation on the left to navigate to the type of resource you would like to find.


Pedal with Pete [For Research on Cerebral Palsy]
Pedal-with-Pete is a philanthropic organization, dedicated to raising funds for research to improve the quality of life for persons with cerebral palsy.


MEDLINEpIus
MEDLINEpIus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.).


Terms and Definitions (Office of Rare Diseases)
The ORDR Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.


On-line Medical Dictionary (CancerWEB)
On-line Medical Dictionary (CancerWEB).


Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish
Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) – Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish.


Merriam-Webster Medical Dictionary (Inteli-Health, Inc.)
Aetna InteliHealth’s mission is to empower people with trusted solutions for healthier lives. We accomplish this by providing credible information from the most trusted sources.


MedicineNet.com Medical Dictionary (MedicineNet, Inc.)
MedTerms medical dictionary is the medical reference for MedicineNet.com. Our doctors define difficult medical language in easy-to-understand explanations of over 16,000 medical terms.
Medterms online medical dictionary provides quick access to hard-to-spell and often misspelled medical definitions through an extensive alphabetical listing.


ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference
The A.D.A.M. Medical Encyclopedia includes over 4,000 articles about diseases, tests, symptoms, injuries, and surgeries. It also contains an extensive library of medical photographs and illustrations


Patient's Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues
Patient safety is one of the nation’s most pressing health care challenges. A 1999 report by the Institute of Medicine estimates that as many as 44,000 to 98,000 people die in U.S. hospitals each year as the result of lapses in patient safety.


Nursing Homes and Long-term Care
A nursing home is a place for people who don’t need to be in a hospital but can’t be cared for at home. Most nursing homes have nursing aides and skilled nurses on hand 24 hours a day.


Medicare
Medicare helps with the cost of health care, but it does not cover all medical expenses or the cost of most long-term care. The program has four parts:

  • Part A is hospital insurance.
  • Part B helps pay for medical services that Part A doesn’t cover.
  • Part C is called Medicare Advantage. If you have Parts A and B, you can choose this option to receive all of your health care through a provider organization, like an HMO.
  • Part D is prescription drug coverage. It helps pay for some medicines.

Medicaid
Medicaid is government health insurance that helps many low-income people in the United States to pay their medical bills. Although the Federal government establishes general guidelines for the program, each state has its own rules. Your state might require you to pay a small part of the cost for some medical services.


Hospice Care
MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free.


HMO and Managed Care
You can use MedlinePlus to learn about the latest treatments, look up information on a drug or supplement, find out the meanings of words, or view medical videos or illustrations. You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition.


Health Statistics
MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free.


Medical Device Manufacturers Association
Programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA).


Association for the Advancement of Medical Instrumentation
Standards (purchase): manufacturing, evaluation, use and sterilization.


American National Standards Institute
American Society for Testing and Materials International (formerly ASTM).


Physician Select, American Medical Association
Basic professional information on virtually every licensed physician in the United States and its possessions, including more than 690,000 doctors of medicine (MD) and doctors of osteopathy or osteopathic medicine (DO). AMA member physicians are offered an “expanded” listing that contains additional information American Board of Medical Specialties


Journal of Pediatric Surgeons
Publication geared towards pediatric health care providers and professionals.


NIH Office of Medical Applications of Research

  • Focal point for evidence-based assessments of medical practice and state-of-the science on behalf of the medical community and the public
  • NIH Consensus Development Program
  • NIH Consensus Statements
  • State-of-the-Science Statements

Healthcare Integrity and Protection Data Bank
HIPDB: national data collection program for the reporting and disclosure of certain final adverse actions taken against health care practitioners, providers and suppliers. Available to government agencies and health plans; attorneys are not permitted to query.


National Practitioner Data Bank and the Healthcare Integrity and Protection Data Bank.
NPDB: resource to assist State licensing boards, hospitals and other health care entities in conducting investigations of the qualification of the health care practitioners they seek to license, hire, grant privileges, etc. Includes information regarding medical malpractice payments, adverse licensure actions, adverse clinical privileges actions, adverse professional membership actions, and Medicare/Medicaid exclusion reports. Plaintiffs may obtain information under limited conditions.