Health sciences library outreach to family caregivers: a call to service
Keywords:Family Caregivers, Information and Referral, Library Services to Special Populations, Community Outreach, Library Marketing
AbstractThis commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1) advocacy, (2) resource building, and (3) programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM) through the NLM 4 Caregivers program.
Medical Library Association. Professional competencies: MLA competencies for lifelong learning and professional success [Internet]. The Association [cited 17 May 2017]. <http://www.mlanet.org/page/test-competencies>.
US Bureau of Labor Statistics. Unpaid eldercare in the United States—2015–2016: data from the American Time Use Survey [Internet]. Report USDL-17-1292. The Bureau [cited 20 Sep 2017]. <https://www.bls.gov/news.release/pdf/elcare.pdf>.
Alzheimer’s Association. 2017 Alzheimer’s disease facts and figures [Internet]. The Association [cited 15 Nov 2017]. <https://www.alz.org/documents_custom/2017-facts-and-figures.pdf>.
National Alliance for Caregiving, AARP Public Policy Institute. Caregiving in the U.S.—caregivers of older adults: a focused look at those caring for someone age 50+ + [Internet]. The Alliance [cited Jun 2015]. <https://www.aarp.org/content/dam/aarp/ppi/2015/caregivers-of-older-adults-focused-look.pdf>.
Stanziano, S. Information seeking behavior of older adults. Ser Libr. 2016 Dec;71(3–4):221–30. DOI: http://dx.doi.org/10.1080/0361526X.2016.1230532.
Poo A, Conrad A. The age of dignity: preparing for the elder boom in a changing America. New York, NY: New Press; 2015.
Brown RM, Brown SL. Informal caregiving: a reappraisal of effects on caregivers. Soc Iss Pol Rev. 2014 Jan;8(1):74–102.
Anderson EW, White KM. “It has changed my life”: an exploration of caregiver experiences in serious illness. Am J Hosp Palliat Care. 2017;35(2):266–74. DOI: http://dx.doi.org/10.1177/1049909117701895.
Skufca L. AARP family caregiving survey: caregivers’ reflections on changing roles [Internet]. AARP Research [cited Nov 2017]. DOI: http://dx.doi.org/10.26419/res.00175.001.
National Alliance for Caregiving and AARP Public Policy Institute. Executive summary: caregiving in the U.S.: executive summary [Internet]. The Alliance [cited Jun 2015]. <http://www.caregiving.org/data/CaregivingUSAllAgesExecSum.pdf>.
Levy D. The family caregiver’s manual: a practical planning guide to managing the care of your loved one. Las Vegas, NV: Central Recovery Press; 2016.
US Centers for Disease Control. Caregiving: a public health priority [Internet]. The Centers [cited Mar 2016]. <http://www.cdc.gov/aging/caregiving>.
Care Corps Demonstration Act (H.R. 3494, 115th Cong., 1st Sess.) [Internet]. [cited 26 Feb 2018]. <https://www.congress.gov/bill/115th-congress/house-bill/3493>.
14. RAISE Family Caregivers Act of 2017 (H.R. 3759, 115th Cong., 1st Sess.). [Internet]. [cited 25 Jan 2018]. <https://www.congress.gov/115/bills/hr3759/BILLS-115hr3759rfs.pdf>.
Caring for Credit Act of 2017 (H.R. 2505, 115th Cong., 1st Sess.) [Internet]. [cited 8 Aug 2017]. <https://www.govtrack.us/congress/bills/115/hr2505>. Or <https://www.congress.gov/bill/115th-congress/house-bill/2505>.
US Centers for Medicare and Medicaid Services. Medicaid.gov: keeping America healthy [Internet]. The Centers [cited 8 Aug 2017] <https://www.medicaid.gov/medicaid/index.html>.
Henry Kaiser Foundation. Medicaid’s role in nursing home care [Internet]. The Foundation [cited 20 Jun 2017]. <http://www.kff.org/infographic/medicaids-role-in-nursing-home-care/>.
US Department of Labor. Family Medical Leave Act (FMLA) [Internet]. The Department [cited 13 Oct 2017]. <https://www.dol.gov/whd/fmla/>.
Transforming Lives and More Network. Knowledge databases [Internet]. The Network [cited 3 Nov 2017]. <http://www.tlmnetwork.org/resources>.
National Library of Medicine. NLM 4 caregivers [Internet]. The Library [cited 8 Aug 2017]. <https://sis.nlm.nih.gov/outreach/caregivers.html>.
National Caregivers Library [Internet]. [cited 8 Aug 2017]. <http://www.caregiverslibrary.org/home.aspx>.
National Rehabilitation Information Center. Information resources for caregiving & caregivers: quick picks from librarians at NARIC [Internet]. The Center [cited 26 Feb 2018]. <https://www.naric.com/?q=en/content/librarians-picks-caregiving-and-caregivers>.
Gale Cengage. Programming tips for National Family Caregiving Month [Internet]. Gale, Cengage Learning [cited 19 Nov 2014]. <http://blog.gale.com/programming-tips-for-national-family-caregiving-month/>.
Caregiver Action Network. Caregiving around the clock [Internet]. The Network [cited 12 Nov 2017]. <http://caregiveraction.org/national-family-caregivers-month-theme>.
Flewelling KW. Library outreach to support groups: a case study. J Hosp Librariansh. 2009 Jan;9(4):362–71. DOI: http://dx.doi.org/10.1080/15323260903251922.
Tamarac Branch Library and TLM Network Special Library. Thriving families=healthier communities library learning expo and self-help resource fair [Internet]. Tamarac Branch Library, Broward County Library System, FL, and TLM Network Special Library [cited 12 Nov 2016]. <https://www.youtube.com/watch?v=Zj03jcLtymw&t=4s>.
AARP TEK. Careversations [Internet]. AARP [cited 18 Nov 2017]. <https://aarptek.aarp.org/workshops/>.
Today’s Caregiver. Fearless caregiver conferences [Internet]. Caregiver.com [cited 18 Nov 2017]. <https://caregiver.com/conference>.
Rotstein G. Libraries offer new materials to assist caregivers. Aging Edge [Internet]. 3 May 2017 [cited 1 Jul 2016]. <http://www.post-gazette.com/aging-edge/gary-rotstein-s-what-s-new-in-aging/2017/05/03/allegheny-county-area-agency-on-aging-libraries-backpacks-caregivers/stories/201705030183>.
Justice EM, Wolf DG, DelFattore J, Wallace W, Holveck L. Healing through creativity: library staff collaboration in arts and writing programs. J Hosp Libriansh. 2017 Feb;17(1):53–64. DOI: http://dx.doi.org/10.1080/15323269.2017.1259446.
Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century [Internet]. The Institute; Mar 2001 [cited 26 Feb 2018]. <http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf>.
Oneview. The eight principles of patient-centered care [Internet]. Oneview [cited 15 May 2015]. <http://www.oneviewhealthcare.com/the-eight-principles-of-patient-centered-care/>.
Grover R, Agade J, Greer RC. Assessing information needs: managing transformative library services. Santa Barbara, CA: Libraries Unlimited; 2010.
Haigler, D, Bauer, LJ, Mims, K. Caring for you…caring for me: education and support for family & professional caregivers: program guide. 3rd ed. Americus, GA: Rosalynn Carter Institute for Caregiving; 2016.
US Administration on Aging. Eldercare locator [Internet]. The Administration [cited 18 Nov 2017]. <https://sis.nlm.nih.gov/outreach/caregivers.html>.
Alzheimer’s Association. Alzheimer’s and dementia caregiver center [Internet]. The Association [cited 11 Nov 2017]. <http://www.alz.org/care/>.
National Library of Medicine. PubMed Health: what works? clinical effectiveness [Internet]. The Library [cited 18 Nov 2017]. <https://www.ncbi.nlm.nih.gov/pubmedhealth/>.
EBSCO Information Services. Library literature & information science full text [Internet]. EBSCO Industries [cited 19 Nov 2017]. <https://www.ebsco.com/products/research-databases/library-literature-information-science-full-text>.
National Academies of Sciences, Engineering, and Medicine. Families caring for an aging America [Internet]. Washington, DC: National Academies Press; 2016 [cited 9 Sep 2017]. <http://nationalacademies.org/hmd/reports/2016/families-caring-for-an-aging-america.aspx>.
Pew Research Center. 5 facts about family caregivers [Internet]. The Center [cited 18 Nov 2015]. <http://www.pewresearch.org/fact-tank/2015/11/18/5-facts-about-family-caregivers/>.
Family Caregiver Alliance, National Center on Caregiving. Caregiving across the states: 50 state profiles--2014 update [Internet]. The Alliance [cited 11 Nov 2017]. <https://www.caregiver.org/caregiving-across-states-50-state-profiles-2014>.
Family Caregiver Alliance, National Center on Caregiving. Family care navigator: state-by-state help for family caregivers [Internet]. The Alliance [cited 11 Nov 2017]. <https://www.caregiver.org/family-care-navigator>.
Bailey WA, Gordon SR. Family caregiving amidst age-associated cognitive changes: implications for practice and future generations. Fam Relat. 2016 Feb;65(2):225–38. DOI: http://dx.doi.org/10.1111/fare.12176.
Sheehy G. Passages in caregiving: turning chaos into confidence. New York, NY: William Morrow; 2010.
This work is licensed under a Creative Commons Attribution 4.0 International License.