Jenna S. McCracken March 06, 2008

Why it matters to me

Background “There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families.” (Murphy 2007)

Common Disabilities Cerebral Palsy Autism Asthma Muscular Dystrophy Down Syndrome Hearing Impairments Vision Impairments Disabilities caused by traumatic events (ex: drowning, MVA, fire, etc)

Role of the Family Day to Day caregiving- responsible for meds, coordinating doctors visits, carrying out therapy Transportation to doctors appointments and therapy Source of information on the child- what the child can tolerate, how they react to certain meds, what social situations the child is most comfortable with, communication with the child

Unique Role of the Sibling Less time and attention from parents Have to be more independent Responsible for helping with care of sibling Become a protector of the sibling Stand-in caregiver when parents are occupied Source of information when a newcomer enters the picture Deal with guilt for being born healthy, anger that they have to deal with the disability, resentment towards parents The unique role of the sibling lies in the fact that with all of the added responsibility, one must learn to accept a disabled sibling as just another brother or sister.

Challenge to the Family Emotional-guilt, anger, resentment, inadequacy Physical- excess lifting, lack of sleep Psychological- depression, anxiety Financial- cost of care (doctor’s appts, medicines, therapy for disabled child and other family members, transportation) Time- needs of the disabled child vs needs of other family members Health-neglect health of themselves over health of disabled child, less time for exercise, refuse to spend money on own healthcare needs

Clinical Significance With increases in modern technology, we are facing a paradigm shift when it comes to disabled children. We are now more capable of saving babies born with greater degrees of handicaps, which is increasing the number of families facing a situation where they will devote much of their time, money, and effort into raising a child with more severe disabilities.

Role of the Clinician Recognize disability early/ease adjustment Ongoing, comprehensive care-act as a consistent source of support Monitor parents/caregivers state of mind at each visit Remind family to receive regular check- ups and prompt treatment for acute illness Encourage treatment for preexisting conditions Educate on injury prevention-facilitate acquisition of necessary equipment

Role of the Clinician Stay up to date on research and equip the family with the most current and correct information available on the child’s condition. This information can act to empower the family to make choices that best fit their lifestyle Encourage the family to educate themselves on available treatments and the types of support that are available Act as a integral link to further support- refer to social service groups, support groups, psychiatric services Learn the tools available in a given area so that caregivers know available options

Interventions Available Financial- Supplemental Security Income (SSI), Medicaid, Food Stamps, Social Security Respite Care Camps for Disabled Child Camps for Siblings Support groups Psychological Care

Impact of Intervention Family cohesiveness which lead to confidence and overall optimism. A family unit where disability is part of the family not the focus or the entirety of the family life Allows the family to focus of the family to remain on the positive…the joy and the unconditional love given by the child and a sense of pride that comes from individuals come together as a team and provide for someone they love.

Disabilities vary from child to child, but the families are usually faced with a very similar set of circumstances. By ensuring that these family members have consistent access to available resources, we as health care providers will be fulfilling our responsibility to ensure that the health of all involved is addressed. Ultimately a family’s resilience depends on the nature of the family when faced by crisis, but the intervention of medical, social, psychological, and emotional support can alleviate the strain on the family and give them a better opportunity to band together and face disability. Children with disabilities are best treated in a functioning family group where the disability is not the focus of the family rather it is integrated into the meshwork of all the family members’ needs and lifestyles. This is bidirectional in that family members who are enabled with tools to provide the best care possible to their family member are generally happier and healthier

The End