Innovations in End-of-Life Care
an international journal of leaders in end-of-life care
Vol. 1, No. 2, 1999
Resources and Tools
Several websites have resources and tools that are geared to meeting the needs of families near the end of life. We will add to this list of specific documents and tools as they come to our attention.
| Source Organization & Home Page | Specific Document or Tool |
| The Catholic Health Association of the United States http://www.chausa.org |
Hints for Conducting
Focus Groups: A quick review of the purpose and logistics of conducting focus groups. Thorough materials and
a bibliography are provided at http://www.careofdying.org/ HOWTO.ASP |
| Edmonton Palliative Care Program http://www.palliative.org |
Resources for Patients and Families
Several short pieces, including Frequently Asked Questions of the Terminally Ill and Their Families
http://www.palliative.org/ patient_family.html |
| Family Re-UnionWebsite http://www.familyreunion.org |
Family Re-Union 8: Family and Community at
http://familyreunion.org/ thisyears.html This 1998 conference at Vanderbilt University is part of an ongoing series of policy meetings moderated by Vice President Gore and Tipper Gore. The focus is on interdependence of family and community and this website has a few links relevant to family-centered care for adults. |
| The Institute for Family-Centered Care http://www.familycenteredcare.org |
This institute serves as a central resource for both family members
and members of the health care field. While primarily focused on pediatric and maternal-child projects, this
site includes a variety of resources including Hospital Forum, a department with profiles of ongoing hospital-based
efforts to promote family-centered care. A profile of the Dana-Farber/Partners Cancer Care Program which focuses on
adult oncology can be found at
http://www.familycenteredcare.org/ dana-farber.html This institute also publishes a print newsletter entitled Advances in Family Centered Care. |
| United Hospital Fund http://www.uhfnyc.org |
The executive summary of a
special report entitled, Rough Crossings: Family Caregivers' Odysseys Through the Health Care System at
http://www.uhfnyc.org/ pubs/books/bkrough.html This report explores the transition into illness and caregiving and provides recommendations for change in the partnership between family caregivers and the health care system. |
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