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Susan Walsh RN, MSN, ACNS-BC, Regional Nurse Manager, ALS Association Greater Philadelphia Chapter
| Date post: | 14-Jul-2015 |
| Category: |
Education |
| Upload: | the-als-association |
| View: | 347 times |
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Susan Walsh RN, MSN, ACNS-BC, Regional Nurse Manager, ALS Association Greater Philadelphia
Chapter
Jennifer Klapper
Susan Schwartz
Shelley Hill
Evelyn Thoman
Susan Walsh
Seek information about coping behaviors and chapter services utilized after diagnosis from patients and next of kin in the first six months following diagnosis of ALS
Literature is void of information on ALS newly diagnosed patient needs
Expert clinical opinion guided development of needs assessment: Nurse, social workers
Chapter Programs and services
Living PALS and next of kin (NOK) diagnosed in the previous 2 years
417 contacted by mail 93 responses
response rate 22.2%
278 contacted by email 66 responses
response rate 23.7%
Total response rate 22.8%
PALS 50.3%NOK 49.7%
No response difference PALS and the NOK on questions
Report that follows is a combination of responses
2.2% attended session
Inconvenient 43% Not aware 38%Not ready 33%
Care 79%Information 59%Connection 22%
Yes 80 %No 24%
No 69%Yes 31%
1. Friends and family 2. ALS Clinic visit3. Gathering info4. Spiritual life 5. Own perspective6. Avoidance
Only 50% responded
Good participation with 50% split between patients and NOK
96% did not attend Newly Diagnosed Session: (did not know, don’t’ want to meet others, inconvenient)
Information seeking is primary (clinic, internet, chapter web site, chapter staff)
Most do not want to meet others
Focus on providing quality internet sites
Clarifying chapter web resources at diagnosis
Increase development of online resources for newly diagnosed phase
Incorporating web site into clinic visits as resource for information
Scheduling of first ALS clinic visit to maximize resource sharing
Binder for clinic information
Utilize the ALSA Living Well for how to tell family and children to enhance natural coping response
Hand out “Why come to resource group” at diagnosis
Provide current Resource Group list
Provide list of contacts for chapter at diagnosis and clarify contact list on web page
Incorporate chapter message “Never alone, together in hope” with handouts
Contact PAL within 48 hours following referral to the chapter by a chapter staff if not seen at diagnosis
Follow up survey in process to evaluate response of newly diagnosed post changes made to practice
