Disability and Chronic Illness:
Psychosocial Aspects

Winter 2001-2002

 

 

THIS THE FIRST TENTATIVE VERSION OF A COURSE WEBPAGE. THIS QUARTER, IT CONTAINS LINKS TO SOME USEFUL BACKGROUND SITES (SHOWN FIRST BELOW). THEN THE LINKS FOR EACH WEEK, INCLUDING ASSIGNED, OPTIONAL, AND “MORE INFORMATION FOR THE INTERESTED” SITES, ARE LISTED BY COURSE WEEK.

 

Please note:  Sites listed in addition to those assigned are not necessarily the best sites out there. Use at your own risk! And look for more . . .

 

 

GENERAL BACKGROUND LINKS

 

 

USEFUL GENERAL-PURPOSE WEB SITE

http://www.accessiblesociety.org/index.shtml

Information from the National Center for An Accessible Society (funded by the National Institute on Disability and Rehabilitation Research). Statistics, info on disabled people and employment, news, disability definition info, facts on web and voting access, ADA, etc.

 

 

 

LIST OF MEMBER SITES OF THE DISABILITY STUDIES WEB RING

http://www.ringsurf.com/netring?ring=disstudies;action=list

Sites ranging from a history of disability to an examination of disability in children’s fiction to a site with links for students researching disability issues and data.

 

 

ON-LINE DISABILITY STUDIES JOURNAL

http://www.cds.hawaii.edu/dsq/

Disability Studies Quarterly

 

 

 

BIBLIOGRAPHIES

 

Suggested Reading on the Disability Experience (Short List)

http://astro.ocis.temple.edu/~lsonnebo/iod/shortlist - poetry

Institute on Disabilities; Pennsylvania's University Affiliated Program at Temple University

 

Fiction, Film, Art Related to Medicine (and Illness and Disability) (Annotated and Searchable Lists)

http://endeavor.med.nyu.edu/lit-med/lit-med-db/topview.html

Art, film, and literature databases listing and reviewing works. Film organized by title; art by artist; literature by keyword, genre, individual annotator, title, era, author, selected ethnicities. Search feature. From the Arts and Medicine Project at the New York University School of Medicine.

 

Disability Studies Bibliography

http://www.colorado.edu/sacs/disabilityservices/disabilitybib.html

University of Colorado at Boulder Disability Services

 

 

 

ART AND CID

 

http://www.niadart.org/exhibits.htm

Gallery of art by CID people, from the National Institute of Art and Disabilities (NIAD)

 

http://www.artheals.org/resource/related/relatedOrgs.html

List of relevant links, by the Art and Healing Network

 

http://www.health.org/features/artprevent/story.htm

Links to pages focused on storytelling, from The National Clearinghouse for Alcohol and Drug Information

 

 

 

 

 

LINKS TO ASSIGNED AND SUPPLEMENTARY READING TIED TO COURSE THEMES

 

 

 

 

Week 2             Social/cultural construction of chronic illness and
Jan. 17          disability

 

Required Reading on the WWW

Sawyer, Eric. “Closing Remarks.” Health, Law and Human Rights Conference, American Society of Law, Medicine and Ethics. Philadelphia, PA. October 1, 2001. Accessed 12/12/01.

http://www.africapolicy.org/docs01/saw0110.htm

 

Optional Reading on the WWW

Washington State Board of Health. Final Report, State Board of Health Priority: Health Disparities.   May 9, 2001. Olympia, WA.  On the WWW at http://www.doh.wa.gov/SBOH/Meetings/2001-05_09/2001_HD_Report.pdf

Note: Adobe Reader required so may need to use TESC computer to access.

 

 

Links to more about social construction related to health, illness and disability

 

http://www.depts.washington.edu/eqhlth/

Health and income equity site at the University of Washington. Has a list of links.  

 

http://www.who.int/icidh/brochure/whatis.htm

Interesting things are happening in disability definition, as part of a quest for a useable biopsychosocial model. Check this site out for a look at how the World Health Organization is revising its 1980 version of the ICIDH (International Classification of Impairments, Disabilities, and Handicaps.

 

http://www.accessiblesociety.org/index.shtml

More good stuff on definitions of disability and why they matter, at the Center for an Accessible Society site. (See buttons on left side of the opening page.)

 

 

 

Week 3   Applying “Biopsychosocial” &  “Construction”

Jan. 24

 

Required Reading on the WWW

 

National Center on Birth Defects and Developmental Disabilities (U.S. Department of Health and Human Services, Centers for Disease Control and Prevention) FAQ Sheet (Frequently Asked Questions) about Fetal Alcohol Syndrome

http://www.cdc.gov/ncbddd/fas/fasask.htm

 

Brinkerhoff, David B., et al. Essentials of Sociology, 5th edition. Wadsworth Publishing, Chpt. 4. “Social Structure and Social Interaction.” Section entitled “When Institutions Die: The Tragedy of the Ojibwa.” (Begins bottom of page 8 of computer file, ends on page 13 of computer file). Accessed 12/12/01.  http://64.78.47.118/samples/Brinkerhoff4Sec.pdf

Note: Adobe Reader required so may need to use TESC computer to access.

 

 

Required Reading in the Academic Search Elite (EBSCOHOST) TESC Library Database

http://ehostvgw6.epnet.com/ehost.asp?key=204.179.122.141_8000_-1843559457&site=ehost&return=n&profile=ase

Nasdijj. “The Blood Runs Like a River Through My Dreams.” Esquire. June 1999. 131:6. P. 115+.

 

 

Links to more about Fetal Alcohol Syndrome

 

http://www.nofas.org/main/index2.htm

Home page for the National Organization on Fetal Alcohol Syndrome, an advocacy group.

 

http://www.come-over.to/FASCRC/

Laypeople’s info on FAS, from the Fetal Alcohol Syndrome Community Resource Center. Near the bottom of the page are several lists of links.

 

Photos of one person with FAS, from age 10 weeks to age 24 years

http://come-over.to/FAS/JohnGrowsUp.htm

 

 

Link to more about a project focused on

 healing cultural trauma in indigineous peoples

http://www.isu.edu/~bhstamm/hct.htm

Project For Community Revitalization & Healing Of Cultural Trauma In Indigenous Peoples 

 

 

Optional Reading on the WWW  -- “disability etiquette”

http://www.accessiblesociety.org/topics/demographics-identity/newparadigm.htm

http://www.ci.sat.tx.us/planning/handbook/

http://home.mem.net/~mcil/mcil/etiqu01.htm

http://www.crinet.org/moreinfo/etq3.htm

http://www.lvc.edu/disability-services/etiquette.html

 

 

 

 

Week 4          Explanatory Models in Action

Jan. 31

 

Required Reading on the WWW

Blue, Amy V. “The Provision of Culturally Competent Health Care.” On the WWW at http://www.musc.edu/deansclerkship/rccultur.html

 

Optional Reading in the PROQUEST TESC Library Database

http://proquest.umi.com/pqdweb

Ford, Maureen and Katherine Pepper-Smith. “Dividing the Difference: Intelligibility as an Element of Moral Education Under Oppression.” Journal of Moral Education, Vol. 27, No. 4. Dec. 1998. Pp. 445-463.

 

 

Links to more about explanatory models and about cultural competency

 

http://www.amsa.org/programs/gpit/cultural.cfm

“Cultural Competency in Medicine” American Medical Student Association

 

http://medicine.ucsf.edu/resources/guidelines/culture.html

Extensive list of links relevant to multicultural resources focused for the most part on health care and medicine, from University of California at San Francisco School of Medicine

 

http://www.eperc.mcw.edu/educate/flash/fastfact/146.htm

 “Fast Fact and Concept #26: The explanatory model” from The End of Life Physican Education Research Project (EPERC)

 

 

 

 

Week 5          CID as Suffering, Secondary Traumatic Stress,   

Feb. 7                   Caring for and Positioning Ourselves

 

Optional Readings on the WWW

·        Compassion Satisfaction/Fatigue Test, at http://www.isu.edu/~bhstamm/tests.htm. Note: If you scroll down far enough, you’ll find links to the test in both HTML and PDF formats.

 

·        McBratney, Heidi. “Vicarious Trauma: An Inside Story.” Psychologica.  Vol. 20, No. 2. Summer 2000. Pages 8-9. Available on the WWW at http://www.oaccpp.on.ca/news/psychvol20-2.pdf.  Accessed 9-10-01.

 

 

 

Links to more about STS

 

http://www.theultimatefirehouse.com/emotional_issues1.htm

Links to information to help firefighters and other emergency personnel deal with “emotional issues” such as STS, anger, grief, stress, etc. From a group called Firefighter Ministries. (Includes links to sites which are not necessarily religious.)

 

http://home.earthlink.net/~hopefull/TC_compassion_fatigue.htm

A list by Hope Morrow, of compassion fatigue articles on-line.

 

 

 

 

Week 6          Adaptation issues and models; self and identity:

Feb. 14          emotions

 

Required Reading in the PROQUEST TESC Library Database

http://proquest.umi.com/pqdweb

Dewar, Anne L. and Elizabeth A. Lee. “Bearing Illness and Injury.”  Western Journal of Nursing Research. Vol. 22  No. 8. (Dec 2000). 912-926.

 

Optional Reading on the WWW

Hawking, Stephen. “Disability: My Experience with ALS.” Available at http://www.hawking.org.uk/disable/dindex.html

 

 

 

Week 7          Self and Identity: body image; Loss and Sorrow;

Feb. 21          Coping

 

Required Reading in the Academic Search Elite (EBSCOHOST) TESC Library Database

http://ehostvgw6.epnet.com/ehost.asp?key=204.179.122.141_8000_-1843559457&site=ehost&return=n&profile=ase

Burke, Mary L. and Georgene G. Eakes. “Milestones of Chronic Sorrow: Perspectives of Chronically Ill and Bereaved Persons and Family Caregivers.” Journal of Family Nursing. Vol. 5 No. 4. (Nov 1999). (SEMINAR TEXT)

 

 

Required Reading – Choose One of These

In PROQUEST TESC Library Database

http://proquest.umi.com/pqdweb

 

·        Livneh, Hanoch. “Psychosocial Adaptation to Cancer: The Role of Coping Strategies.” Journal of Rehabilitation. Vol 66. No. 2. (Apr/May/Jun 2000). Pp 40-49.

·        Livneh, Hanoch. “Psychosocial Adaptation to Cancer: The Role of Coping Strategies.” Journal of Rehabilitation. Vol 65. No. 3. (Jul/Aug/Sep 1999). Pp. 24-32.

 

 

Optional Reading in the Academic Search Elite (EBSCOHOST) TESC Library Database

http://ehostvgw6.epnet.com/ehost.asp?key=204.179.122.141_8000_-1843559457&site=ehost&return=n&profile=ase

Cerney, Mary S and James R. Buskirk. “Anger: The Hidden Part of Grief.” Bulletin of the Menninger Clinic.  55:2. (Spring 91)

 

 

Optional Reading in the PROQUEST TESC Library Database

http://proquest.umi.com/pqdweb

Benson, Betsey A. and Carola Fuchs. “Anger-Arousing Situations and Coping Responses of Aggressive Adults with Intellectual Disability.” Journal of Intellectual and Developmental Disability.  Sept. 1999.

 

 

 

Links to more about loss and grief

 

http://www.indiana.edu/~famlygrf/sitemap.html

This is the site map for a course called “Grief in a Family Context” and taught by Dr. Kathleen Gilbert at Indiana University. Lots of very good stuff  (including Dr. Gilbert’s lectures), and links.

 

 

 

Week 8          “Reorganization”: Making Sense of CID

Feb. 28

 

Required Reading in the PROQUEST TESC Library Database

http://proquest.umi.com/pqdweb

Paterson, Barbara, et al. “Living with Diabetes as a Transformational Experience.”  Qualitative Health Research. Vol. 9 No. 6. (Nov 1999). 786-802.

 

 

Optional Reading in the PROQUEST TESC Library Database

http://proquest.umi.com/pqdweb

Parr, Susie. “Psychosocial Aspects of Aphasia: Whose Perspectives?” Folia Phoniatrica et Logopaedica. Vol. 53, No. 5. (Spe/Oct 2001). 266+

 

 

 

Week 10          CID and Family

Mar. 14

 

Required Reading on the WWW

Lore, Diane. “Mothers Who Think: Emotional Handicap.” Salon.com. On the WWW at http://www.salon.com/mwt/feature/1999/08/26/disabledgma/index.html

 

Optional Reading on the WWW

Mercer, Ramona. “Chronically ill children: how families adjust.”  Available at http://www.nurseweek.com/ce/ce565a.html

 

 

http://www.aamft.org/families/Consumer_Updates/ChronicIllness.htm

A brief overview of when to seek help and the type of interventions available when chronic illness affects a family, from The American Association for Marriage and Family Therapy.