A search of the literature using ‘Summon’, a new search engine adopted by the University of Calgary, was the starting point for the search. This search engine performs a simultaneous search of the academic literature as well as newspaper articles, archives, dissertations, museum holdings, reports, and other documents located on the internet. In other words, it captures the grey literature that is commonly missed when conducting academic searches.
The search revealed a vast amount of literature that has been published since 2000 on challenges associated with caregiving, including a number of reports summarizing the various instruments used to measure these challenges.
The following reports were instrumental in this review:
Family Caregiver Alliance (2006). Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers. San Francisco, CA.
Family Caregiver Alliance (2008). Practical Tools and Resources for Caregivers. Invitational Symposium Washington, DC.)
Family Caregiver Alliance (2002). Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners. San Francisco, CA.
Furthermore, the ‘Toolkit to Measure End-of-Life Care’ website (http://web.archive.org/web/20130613084747/http://www.chcr.brown.edu/pcoc/Quality.htm), supported by the Centre for Gerontology and Health Care Research at Brown University, was cross-referenced. This site describes a number of generic caregiver assessment tools, particularly those measuring quality of life.
In terms of criteria, all measures included in this document have been published. Scales have undergone peer-review and can thus be deemed acceptable (i.e., valid and reliable) when used with populations for which they were developed. It should be noted that some scales fall in the public domain, others are available but must be accessed via an academic article, while other still must have permission from the author prior to being used (and may require a fee). Those in the public domain have either been linked to a .pdf document or .html document. Also, not all measures included in this document have been developed specifically for the caregiving population. Those developed for the general population are noted in the individual measure descriptions.