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Practical Tips and Helpful Caregiver Resources
How can you best prepare for the journey ahead? It will be helpful to be surrounded by a sense of order,
structure and organization. Try to organize schedules, family members’ needs, daily and weekly routines. While
accomplishing this may seem like a scary task, the more your lives can be organized, the less stressful your days
will be. Remember this is not something to be done in one afternoon, but a goal to work toward. Below is a list of
strategies that you may find helpful; some are general while others are specific:
I. For your child (for more help, see American Academy of Pediatrics website for children with special
needs: http://www.medicalhomeinfo.org/ )

Keep a small notebook nearby in which you keep a list of questions to take with you for your
child’s doctor’s appointment

Organize a binder that includes important names, addresses and phone numbers that you may
need in the following areas
o
Care of your child -physicians, nurses, therapists, care attendants and counselors
o
Resources - equipment dealers, suppliers for catheters, skin products, other commonly
used products
o
Well-being of your child - a list of all medications/dosage/ frequency, a copy of his/her
medical history with diagnosis and injury level, information on Autonomic Dysreflexia if
appropriate

Consider investing in a computer and internet connection, if you do not currently have them

Study and understand your insurance policy (this is a task that could be assigned to a member of
your family or close friend) to learn important benefits for your child and how to use the
insurance plan and its benefits to your best advantage

Keep informed about the latest adaptive equipment
II. For you and your spouse/significant other


Try to exercise on a regular schedule
Keep doctors’ appointments that will preserve your own health
75-20 Astoria Blvd. Jackson Heights, NY 11370, (718) 512-0010 (V), (866) 387-2196 (F)

Develop a network of friends and/or family members who can help you
o
Assign specific tasks to these individuals such as:
 Coordinate a list of volunteers to provide meals for the family
 Send updated messages to designated persons about your child’s progress (see
www.caringbridge.org )
 Find resources in the community as needed
 Make appointments as needed
 Stay with your injured child to enable you to take care of other family or personal
needs
 Provide transportation for scouting, music lessons, and sports activities for other
children/siblings within the family.

Identify the aspects of your caregiver role that are most difficult:
o
Try to find specific ways to address these issues
 Discuss these difficult areas with a spouse or significant other
 Match tasks and responsibilities to correspond to each person’s area of comfort, i.e.
who will do what parts of daily and weekly routines such as laundry, grocery shopping,
house cleaning? Who will assist with your child’s daily needs such bathing, feeding,
toileting, transferring, etc
 Identify parts of your child’s Activities of Daily Living (ADL) that are more difficult for
you. Is there someone else in the family who could assume particular aspects of your
child’s daily or weekly routine or could it be assigned to a home health aide?
o
Seek supportive counseling for yourself and/or your family
o
Identify coping techniques to help manage and/or reduce your stress and anxiety
75-20 Astoria Blvd. Jackson Heights, NY 11370, (718) 512-0010 (V), (866) 387-2196 (F)
References
Boockvar JA, Durham SR and Sun PP (2001). Cervical spinal stenosis and sports-related cervical cord neurapraxia
in children. Spine 26:2709-12.
Dobbs, Jean, Editor (2004). Kids on Wheels: A Guide to Wheelchair Lifestyle for Parents, Teachers and
Professionals. No Limits Communications, Inc., Horsham, PA.
Journal of Spinal Cord Medicine (2004). Pediatric SCI Supplement, 27:1
Keen, T.P. (1990). Nursing care of the pediatric multi-trauma patient. Nursing Clinics of North America, 25:131-41.
Maddox, Sam (2003). Paralysis Resource Guide. Christopher and Dana Reeve Paralysis Resource Center, Short
Hills, NJ.
Massagli, Terry, MD (Winter 2005). SCI in Children and Teens. An interview in SCI Update, University of
Washington Department of Rehabilitation Medicine, 14:1.
Nickel, Robert E. and Larry W. Desch, Editors (2000). Physician’s Guide to Caring for Children with Disabilities and
Chronic Conditions. Paul H. Brookes Publishing Co., Baltimore, MD.
On the Move: A Financial Guide for People with Spinal Cord Injury (2002). Provided as a public service by PVA,
NSCIA, and National Endowment for Financial Education.
Vogel, LC, Klaas, SJ, Lubicky, JP, and Anderson, CJ (1998 Dec). Long Term Outcomes and Life Satisfaction of Adults
Who Had Pediatric SCI. Archives of Physical Medicine Rehabilitation. 79(12):1496-1503.
Vogel, LC, Hickey, KJ, Klaas, SJ, and Anderson, CJ (2004 Sep/Oct). Unique Issues in Pediatric Spinal Cord Injury.
Orthopaedic Nursing. 23(5): 300-308.
Young,
Wise,
MD
(2003).
Pediatric
SCI.
Online
http://sci.rutgers.edu/index.php?page=viewarticle&[email protected]
Acknowledgments:
75-20 Astoria Blvd. Jackson Heights, NY 11370, (718) 512-0010 (V), (866) 387-2196 (F)
document:
The National Spinal Cord Injury Association (NSCIA) would like to thank Michele E. Fantasia, MD, Pediatric
Physiatrist, Sara J. Klaas, LSW, C-ASWCM and Lisa Merenda, RN, MSN, CRRN, for their time and expertise in the
preparation of this Factsheet.
This Factsheet is offered by NSCIA as an information service and a resource guide to help parents/legal guardians
and families seek appropriate and quality care for their child who has sustained a spinal cord injury. Any
information that you may have to further update this Factsheet would be greatly appreciated.
The NSCIA Resource Center, Spinal Cord Central provides information and referral on any subject related to spinal
cord injury. Contact Spinal Cord Central at [email protected] or 1-800-962-9629.
Prepared: June 2007
Updated: July 2011
75-20 Astoria Blvd. Jackson Heights, NY 11370, (718) 512-0010 (V), (866) 387-2196 (F)