Learning from experience: does providing end-of-life care support for relatives boost personal end-of-life health literacy?

被引:1
作者
Meier, Clement [1 ,2 ]
Wieczorek, Maud [3 ]
Vilpert, Sarah [4 ]
Borrat-Besson, Carmen [5 ]
Jox, Ralf J. [6 ,7 ]
Maurer, Juergen [3 ]
机构
[1] Univ Lausanne, Fac Biol & Med FBM, Swiss Ctr Expertise Social Sci FORS, Lausanne, Switzerland
[2] Univ Lausanne, Fac Business & Econ HEC, Swiss Ctr Expertise Social Sci FORS, Lausanne, Switzerland
[3] Univ Lausanne, Fac Business & Econ HEC, Lausanne, Switzerland
[4] Univ Lausanne, Fac Business & Econ HEC, Swiss Ctr Expertise Social Sci FORS, Lausanne, Switzerland
[5] Univ Lausanne, Swiss Ctr Expertise Social Sci FORS, Lausanne, Switzerland
[6] Lausanne Univ Hosp, Inst Humanities Med, Chair Geriatr Palliat Care, Palliat & Support Care Serv, Lausanne, Switzerland
[7] Univ Lausanne, Lausanne, Switzerland
关键词
End of life; Health literacy; Caregivers; Experiences; Family care; QUALITATIVE SECONDARY ANALYSIS; FAMILY CAREGIVERS LEARN; DECISION-MAKING; ADULTS; RACE;
D O I
10.1186/s12904-025-01645-1
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background Despite the critical role of health literacy in utilizing palliative care and engaging in advance care planning, limited research exists on the determinants of end-of-life health literacy. This study investigates the association between individuals' experiences with end-of-life care support to relatives and their end-of-life health literacy among a population-based sample of adults aged 58 and older. Method We used data from 1,548 respondents in Switzerland to Wave 8 (2019/2020) of the Survey on Health, Ageing, and Retirement in Europe. Their ability to understand medical jargon, find information, communicate, and make decisions about end-of-life care options was measured with the validated Subjective End-of-Life Health Literacy Scale. Experiences with end-of-life care support include having made medical decisions as healthcare proxy, accompanied, or cared for relatives at the end of life. Associations were estimated using ordinary least squares regressions, controlling for socio-demographic, health, and regional characteristics. Results Respondents who experienced being a healthcare proxy (p < 0.001), who accompanied (p < 0.001), or who cared for a relative at the end of life (p < 0.001) tended to have higher levels of end-of-life health literacy. These results remained significant when the three variables were simultaneously included in the multivariable model (p < 0.001, p < 0.001 and p < 0.05). Conclusions Our findings suggest that providing end-of-life care support to relatives is associated with higher end-of-life health literacy. Thus, as caregivers gain experience caring for others, targeted interventions could leverage their skills and encourage them to think of engaging in end-of-life planning for themselves.
引用
收藏
页数:9
相关论文
共 47 条
[1]   A Systematic Review and Meta-Analysis on the Prevalence of Dementia in Europe: Estimates from the Highest-Quality Studies Adopting the DSM IV Diagnostic Criteria [J].
Bacigalupo, Ilaria ;
Mayer, Flavia ;
Lacorte, Eleonora ;
Di Pucchio, Alessandra ;
Marzolini, Fabrizio ;
Canevelli, Marco ;
Di Fiandra, Teresa ;
Vanacore, Nicola .
JOURNAL OF ALZHEIMERS DISEASE, 2018, 66 (04) :1471-1481
[2]   Data Resource Profile: The Survey of Health, Ageing and Retirement in Europe (SHARE) [J].
Boersch-Supan, Axel ;
Brandt, Martina ;
Hunkler, Christian ;
Kneip, Thorsten ;
Korbmacher, Julie ;
Malter, Frederic ;
Schaan, Barbara ;
Stuck, Stephanie ;
Zuber, Sabrina .
INTERNATIONAL JOURNAL OF EPIDEMIOLOGY, 2013, 42 (04) :992-1001
[3]  
Borsch-Supan Axel, 2022, SHARE, V8.0.0
[4]   Medical End-of-Life Practices in Switzerland: A Comparison of 2001 and 2013 [J].
Bosshard, Georg ;
Zellweger, Ueli ;
Bopp, Matthias ;
Schmid, Margareta ;
Hurst, Samia A. ;
Puhan, Milo A. ;
Faisst, Karin .
JAMA INTERNAL MEDICINE, 2016, 176 (04) :555-556
[5]   Grief literacy: A call to action for compassionate communities [J].
Breen, Lauren J. ;
Kawashima, Daisuke ;
Joy, Karima ;
Cadell, Susan ;
Roth, David ;
Chow, Amy ;
Macdonald, Mary Ellen .
DEATH STUDIES, 2022, 46 (02) :425-433
[6]  
CDC, 2021, What is health literacy? Take action. Find out
[7]   Communication challenges in end-of-life decisions [J].
Christoph, Becker ;
Katharina, Beck ;
Alessia, Vincent ;
Sabina, Hunziker .
SWISS MEDICAL WEEKLY, 2020, 150 :w20351
[8]  
Cohen J., 2012, A public health perspective on end of life care, DOI [10.1093/acprof:oso/9780199599400.001.0001, DOI 10.1093/ACPROF:OSO/9780199599400.001.0001]
[9]   Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy [J].
de Vries, Kay ;
Banister, Elizabeth ;
Dening, Karen Harrison ;
Ochieng, Bertha .
NURSING ETHICS, 2019, 26 (7-8) :1946-1954
[10]  
End of Life Aid Skills for Everyone (EASE), Good Life Good Death Good Grief