Community Resource Audit- Parents Whose Children Has Cancer By Lauren Becker LIS 601-202 Dr. Burns
Community Resource Audit-Parents Whose Children Has Cancer
By Lauren Becker
LIS 601-202
Dr. Burns
Background on Childhood Cancer• About “12,400 children and adolescents
younger than 20 years of age are
diagnosed” in the U.S. every year
• Most children are affected by“brain, blood-
forming tissues (leukemia), lymph system
(lymphoma), sympathetic nervous system
(neuroblastoma), and kidneys (Wilms
tumor)”
Stress on Parents• Treatment- have to mention possible side effects
• Parents worry about harming their child
• Post-Treatment: Little Support
Information Behavior• Author Helen Fisher analyzed 8 studies and found
parents thought information was lacking.
• Some parents ignored information; most were found
to want as much information was possible.
Doctor Relationship• Parents would rather doctors admit not knowing
something.
• Health care professionals have to “put aside the
arrogance that prevents true partnership, and
recognize that it is the parents who are constantly
living with their child's condition who are the experts
on the intricacies of the child's illness” (Fisher, 2002,
p. 606).
Sources of Information• Parents want answers from doctors- but sometimes
have to force it. They want more time with hospital
staff
• Other sources: library, internet, other parents,
support groups
Pro/Con of Support Groups• Study of support groups for parents whose kids had
traumatic brain injuries
• Information can cause distress
• Stress management can help ease distress
The Internet• Donald O. Case writes: “libraries rank fifth as „first-
choice‟ source of cancer information, with the first
four sources being the Internet, followed distantly by
books, health-care providers, then magazines”
• Not always accurate information
• Need reliable sources offering assistance
Ethical Issue• Parents have the right to deny treatments
• Health care professionals have to focus on child
• Child is ultimately the one who the information
benefits
Needs Assessment: Evaluation Method
• Questionnaires followed by personal interviews
• Questionnaires given to both parents if applicable
• Example: You have enough time with your child‟s
doctor to answer questions
• Circle: Completely Agree, Somewhat Agree, Do
Not Agree, and Not Applicable
• Use this to form questions for personal interviews
Data Analysis• Statement questions will be added up by numbers-
see what parents most felt
• Unique statements will be coded by key
words/phrases
Impact of Results• See if it parallels previous studies concerning
parent/doctor relationships
• Will hopefully lead to better, more specialized
studies
• Gives libraries and other information professionals a
way to help parents
Finding Information• Sources- hospitals, libraries, etc. – need to have
easy-to-find information.
• Information needs to be updated, credible