Human dignity and autonomy in the care for patients with dementia: differences among formal caretakers from various cultural backgrounds

Ethn Health. 2018 Feb;23(2):121-141. doi: 10.1080/13557858.2016.1246519. Epub 2016 Oct 21.

Abstract

Objectives: To explore whether gaps exist between caretakers from different ethno-cultural groups (Israeli-born Jews [Sabras], Israeli Arabs [Arabs], and migrants from Russia [Russians]) regarding their perceptions of autonomy and human dignity of patients with dementia.

Design: A mixed-methods research scheme was used, comprised of qualitative and quantitative methods, utilizing semi-structured interviews and self-reported questionnaires. Twenty formal caretakers participated in the qualitative portion, and approximately 200 caretakers were included in the quantitative portion. All participants were recruited from three nursing homes and one hospital in the Galilee region (Israel).

Results: The qualitative portion of the study yielded eight themes encapsulated in the concept of autonomy and ten themes entailed within human dignity, in the context of care for patients with dementia. By utilizing these themes in the quantitative portion, substantial differences in nursing homes were found in the attitudes to autonomy and dignity of patients with dementia between Russian and Arab as well as Sabra caretakers (index score for autonomy: 2.97, 4.07, and 4, respectively; index score for dignity: 3.17, 4.1, and 4.07). A multi-variable regression, focusing on caretakers from nursing homes, showed the most significant influencing variables on the indexes of autonomy and dignity were ethno-culture Arab/Russian (0.84, 0.62) and the patient's family (0.29, 0.30). Regarding the autonomy index, being a female caretaker also had a significant influence (0.24). In the hospital, no influence emerged for the ethno-culture variables, and neither type of institution showed any influence of religion or religiousness as well as societal or community norms.

Conclusions: Contrary to past research, in nursing homes, significant differences were found between certain ethno-cultural groups (Arabs and Russians) regarding their stance toward the dignity and autonomy of patients with dementia. Arab caretakers' fostering of more encompassing conceptions of dignity and autonomy, irrespective of institutional setting, provides better grounds for person-centered care.

Keywords: Formal caretakers; autonomy; demented patients; human dignity; mixed methods; multicultural; perception.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Arabs / statistics & numerical data
  • Caregivers / psychology*
  • Culture*
  • Dementia* / ethnology
  • Dementia* / nursing
  • Europe
  • Female
  • Humans
  • Israel
  • Jews / statistics & numerical data
  • Male
  • Middle Aged
  • Personal Autonomy*
  • Personhood*
  • Qualitative Research