Hostname: page-component-cd9895bd7-lnqnp Total loading time: 0 Render date: 2024-12-23T15:39:43.888Z Has data issue: false hasContentIssue false
  • English
  • Français

Educational intervention to improve palliative care knowledge among informal caregivers of cognitively impaired older adults

Published online by Cambridge University Press:  25 November 2020

Hyunjin Noh Open the ORCID record for Hyunjin Noh [Opens in a new window] ,
Lewis H. Lee  and
Chorong Won
Hyunjin Noh*
Affiliation:
The University of Alabama School of Social Work, Tuscaloosa, AL
Lewis H. Lee
Affiliation:
The University of Alabama School of Social Work, Tuscaloosa, AL
Chorong Won
Affiliation:
The University of Alabama School of Social Work, Tuscaloosa, AL
*
Author for correspondence: Hyunjin Noh, The University of Alabama School of Social Work, Box 870314, Tuscaloosa, AL35487-0314, USA. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.

Method

Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.

Results

There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).

Significance of results

This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

Keywords

Cognitive impairmentEducational interventionInformal caregiversPalliative care knowledge
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 5 , October 2021 , pp. 515 - 523
Check for updates
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abramsohn, EM, Jerome, J, Paradise, K, et al. (2019) Community resource referral needs among African American dementia caregivers in an urban community: A qualitative study. BMC Geriatrics 19(1), 311.CrossRefGoogle Scholar
Akiyama, M, Hirai, K, Takebayashi, T, et al. (2016) The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public. Supportive Care in Cancer 24(1), 347–356. doi:10.1007/s00520-015-2788-4CrossRefGoogle ScholarPubMed
Barwise, A, Cheville, A, Wieland, ML, et al. (2019) Perceived knowledge of palliative care among immigrants to the United States: A secondary data analysis from the Health Information National Trends Survey. Annals of Palliative Medicine 8(4), 451–461. https://doi-org.libdata.lib.ua.edu/10.21037/apm.2019.02.06CrossRefGoogle Scholar
Boakye, EA, Mohammed, KA, Osazuwa-Peters, N, et al. (2019) Palliative care knowledge, information sources, and beliefs: Results of a national survey of adults in the USA. Palliative & Supportive Care, 1–8. doi:10.1017/s1478951519000786Google Scholar
Boucher, NA, Raghavan, M, Smith, A, et al. (2016) Palliative care in the African American community #204. Journal of Palliative Medicine 19(2), 228–230. doi:10.1089/jpm.2015.0523CrossRefGoogle Scholar
Center to Advance Palliative Care and National Palliative Care Research Center (2019) America's care of serious illness: A state-by-state report card on access to palliative care in our nation's hospitals. Available at: https://reportcard.capc.org/wpcontent/uploads/2019/09/CAPC_ReportCard19-Digital_9_19.pdf.Google Scholar
Chang, HH, Hu, WY, Tsai, SSL, et al. (2009) Reflections on an end-of-life care course for preclinical medical students. Journal of the Formosan Medical Association 108(8), 636–643. doi:10.1016/S0929-6646(09)60384-3CrossRefGoogle Scholar
Chang, AK, Edwards, RR, Morrison, RS, et al. (2019) Disparities in acute pain treatment by cognitive status in older adults with hip fracture. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences. doi:10.1093/gerona/glz216Google Scholar
Cheng, BT, Wangmo, T and Hauser, JM (2019) Patterns of palliative care beliefs among adults in the U.S.: Analysis of a National Cancer Database. Journal of Pain and Symptom Management. https://doi-org.libdata.lib.ua.edu/10.1016/j.jpainsymman.2019.07.030CrossRefGoogle ScholarPubMed
Chuang, E, Hope, AA, Allyn, K, et al. (2017) Gaps in provision of primary and specialty palliative care in the acute care setting by race and ethnicity. Journal of Pain and Symptom Management 54(5), 645–653. doi:10.1016/j.jpainsymman.2017.05.001CrossRefGoogle ScholarPubMed
Cohen, J (1988) Statistical Power Analysis for the Behavioral Sciences, 2nd ed. Hillsdale, NJ: Erlbaum.Google Scholar
Connor, SR and Bermedo, MCS (2014) Global atlas of palliative care at the end of life. Available at: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.Google Scholar
Corbett, CM (2018) Effecting palliative care for patients with chronic kidney disease by increasing provider knowledge. Nephrology Nursing Journal 45(6), 525–546.Google ScholarPubMed
da Silva, GF, Morano, MTA, Sales, MPU, et al. (2014) Comparison of face-to-face interview and telephone interview administration of COPD assessment test: A randomized study. Quality of Life Research 23(4), 1193–1197. doi:10.1007/s11136-13-0563-xCrossRefGoogle ScholarPubMed
Dauphinot, V, Boublay, N, Moutet, C, et al. (2020) Comparison of Instrumental Activities of Daily Living assessment by face-to-face or telephone interviews: A randomized, crossover study. Alzheimer's Research & Therapy 12(1), 24. doi:10.1186/s13195-020-00590-wCrossRefGoogle ScholarPubMed
DeVader, TE and Jeanmonod, R (2012) The effect of education in hospice and palliative care on emergency medicine residents’ knowledge and referral patterns. Journal of Palliative Medicine 15(5), 510–515. doi:0.1089/jpm.2011.0381CrossRefGoogle ScholarPubMed
Dionne-Odom, JN, Ornstein, KA and Kent, EE (2019) What do family caregivers know about palliative care? Results from a national survey. Palliative & Supportive Care, 1–7. doi:10.1017/S1478951519000154Google ScholarPubMed
Engel, RJ and Schutt, RK (2013) The Practice of Research in Social Work, 3rd ed. Thousand Oaks, CA: Sage.Google Scholar
Faigle, R, Ziai, WC, Urrutia, VC, et al. (2017) Racial differences in palliative care use after stroke in majority-white, minority-serving, and racially integrated U.S. hospitals. Critical Care Medicine 45(12), 2046–2054. doi:10.1097/CCM.0000000000002762CrossRefGoogle ScholarPubMed
Janssen, PM, Visser, NA, Dorhout Mees, SM, et al. (2010) Comparison of telephone and face-to-face assessment of the modified Rankin Scale. Cerebrovascular Diseases 29(2), 137–139. doi:10.1159/000262309CrossRefGoogle ScholarPubMed
Johnson, KS (2013) Racial and ethnic disparities in palliative care. Journal of Palliative Medicine 16(11), 1329–1334.CrossRefGoogle ScholarPubMed
Koffman, J, Burke, G, Dias, A, et al. (2007) Demographic factors and awareness of palliative care and related services. Palliative Medicine 21(2), 145–153. doi:10.1177/0269216306074639CrossRefGoogle ScholarPubMed
Kozlov, E, Carpenter, BD and Rodebaugh, TL (2017a) Development and validation of the Palliative Care Knowledge Scale (PaCKS). Palliative & Supportive Care 15, 524–534.CrossRefGoogle Scholar
Kozlov, E, Reid, MC and Carpenter, BD (2017b) Improving patient knowledge of palliative care: A randomized controlled intervention study. Patient Education and Counseling 100(5), 1007–1011. doi:10.1016/j.pec.2016.12.022CrossRefGoogle Scholar
Kozlov, E, McDarby, M, Reid, MC, et al. (2018) Knowledge of palliative care among community-dwelling adults. American Journal of Hospice & Palliative Medicine 35(4), 647–651. doi:10.1177/1049909117725725CrossRefGoogle ScholarPubMed
Kupeli, N, Sampson, EL, Leavey, G, et al. (2019) Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: Family carers perspective. BMC Palliative Care 18(1). https://doi-org.libdata.lib.ua.edu/10.1186/s12904-019-0467-9CrossRefGoogle ScholarPubMed
Litzelman, DK, Cottingham, AH, Inui, TS, et al. (2016) Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning. Palliative and Supportive Care 14(6), 641–651. doi:10.1017/S1478951516000353CrossRefGoogle ScholarPubMed
LoPresti, MA, Dement, F and Gold, HT (2016) End-of-life care for people with cancer from ethnic minority groups: A systematic review. American Journal of Hospice and Palliative Care 33(3), 291–305.CrossRefGoogle ScholarPubMed
Matsuyama, RK, Balliet, W, Ingram, K, et al. (2011) Will patients want hospice or palliative care if they do not know what it is? Journal of Hospice & Palliative Nursing 13(1), 41–46.CrossRefGoogle Scholar
McDermott, JH, Nichols, DR and Lovell, ME (2014) A case-control study examining inconsistencies in pain management following fractured neck of femur: An inferior analgesia for the cognitively impaired. Emergency Medicine Journal: EMJ 31(e1), e2–8. doi:10.1136/emermed-2013-203007CrossRefGoogle ScholarPubMed
McIlfatrick, S (2007) Assessing palliative care needs: Views of patients, informal carers and healthcare professionals. Journal of Advanced Nursing 57(1), 77–86.CrossRefGoogle ScholarPubMed
National Consensus Project for Quality Palliative Care (2018) Clinical practice guidelines for quality palliative care. Available at: https://www.nationalcoalitionhpc.org/ncp.Google Scholar
National Hospice and Palliative Care Organization (2018) Palliative care needs survey results. Available at: https://www.nhpco.org/wp-content/uploads/2019/04/Palliative_Care_Needs_Report_NHPCO.pdf.Google Scholar
National Hospice Palliative Care Organization (2019) Palliative care or hospice care? Available at: https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_VS_Hospice.pdf.Google Scholar
National Institute of Nursing Research (2020) What is palliative care? Available at: https://www.ninr.nih.gov/newsandinformation/what-is-palliative-care.Google Scholar
Prasad, K, Kumar, A, Misra, S, et al. (2018) Reliability and validity of telephonic Barthel Index: An experience from multi-centric randomized control study. Acta Neurologica Belgica 118(1), 53–59. doi:10.1007/s13760-017-0843-2CrossRefGoogle ScholarPubMed
Pridemore, WA, Damphousse, KR and Moore, RK (2005) Obtaining sensitive information from a wary population: A comparison of telephone and face-to-face surveys of welfare recipients in the United States. Social Science & Medicine 61(5), 976–984. doi:10.1016/j.socscimed.2005.01.006CrossRefGoogle ScholarPubMed
Shalev, A, Phongtankuel, V, Kozlov, E, et al. (2018) Awareness and misperceptions of hospice and palliative care: A population-based survey study. American Journal of Hospice and Palliative Medicine 35(3), 431–439. doi:10.1177/1049909117715215CrossRefGoogle ScholarPubMed
Taber, JM, Ellis, EM, Reblin, M, et al. (2019) Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample. PLoS One 14(8), 1–17. https://doi-org.libdata.lib.ua.edu/10.1371/journal.pone.0219074CrossRefGoogle Scholar
Von Gunten, CF, Twaddle, M, Preodor, M, et al. (2005) Evidence of improved knowledge and skills after an elective rotation in a hospice and palliative care program for internal medicine residents. American Journal of Hospice & Palliative Medicine 22(3), 195–203.CrossRefGoogle Scholar
Washington, KT, Meadows, SE, Elliott, SG, et al. (2011) Information needs of informal caregivers of older adults with chronic health conditions. Patient Education and Counseling 83(1), 37–44.CrossRefGoogle ScholarPubMed
Zimmermann, C, Krzyzanowska, M, Leighl, N, et al. (2016) Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ 188(10), E217–E227. doi:10.1503/cmaj.151171CrossRefGoogle ScholarPubMed