"I Treat Him as a Normal Patient": Unveiling the Normalization Coping Strategy Among Formal Caregivers of Persons With Dementia and Its Implications for Person-Centered Care.

INTRODUCTION: Currently, 47 million people have dementia, worldwide, often requiring paid care by formal caregivers. Research regarding family caregivers suggests normalization as a model for coping with negative emotional outcomes in caring for a person with dementia (PWD). The study aims to explore whether normalization coping mechanism exists among formal caregivers, reveal differences in its application among cross-cultural caregivers, and examine how this coping mechanism may be related to implementing person-centered care for PWDs. METHOD: Content analysis of interviews with 20 formal caregivers from three cultural groups (Jews born in Israel [JI], Arabs born in Israel [AI], Russian immigrants [RI]), attending to PWDs. RESULTS: We extracted five normalization modes, revealing AI caregivers had substantially more utterances of normalization expressions than their colleagues. DISCUSSION: The normalization modes most commonly expressed by AI caregivers relate to the personhood of PWDs. These normalization modes may enhance formal caregivers' ability to employ person-centered care.

Autonomy and dignity of patients with dementia: Perceptions of multicultural caretakers.

BACKGROUND: A key message in the World Health Organization's report on dementia emphasizes the need to improve public and professional attitudes to dementia and its understanding, while acknowledging the fact that the workforce in dementia care is becoming increasingly diverse culturally. OBJECTIVES: To explore possible differences among formal caretakers from varied cultural background in their attitudes toward the autonomy and human dignity of patients with dementia. RESEARCH DESIGN: Semi-structured interviews and content analysis, utilizing two fictional vignettes for eliciting caretakers' attitudes toward dignity and autonomy of their patients. Participants and context: A total of 20 formal caretakers of patients with dementia from three different cultural groups in Israel ("Sabras," "Arabs," and "Russians"), working in nursing homes and a hospital. Ethical consideration: Approvals of relevant research ethics committees were obtained and followed. FINDINGS: In comparison with the other groups, most Arab caretakers offer markedly richer perceptions of human dignity and autonomy. Their human dignity's conceptualization emphasizes "person-centered approach," and their perception of patients' autonomy includes provision of explanations and preservation and encouragement of independence. DISCUSSION: The differences found in the attitudes toward the meaning of autonomy and human dignity between the Arab caretakers and the other caretakers stand in contrast to previous studies regarding human dignity, emphasizing the common nature of these attitudes. Offering a linkage (theoretical and empirical) between the Arab perceptions of dignity and autonomy, the study strengthen and further the importance attributed in existing literature to person-centered care in enhancing the quality of care for patients with dementia. CONCLUSION: The conceptualization of human dignity may vary among different cultural groups. It may also influence the extent to which the caretaker holds a full-fledged perception of the patients' autonomy.

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

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.

Dignity and autonomy in the care for patients with dementia: Differences among formal caretakers of varied cultural backgrounds and their meaning.

BACKGROUND: A key message in the World Health Organization report on dementia (2012) emphasizes this disease as a top priority in public health and the need to improve professional attitudes to patients with dementia, while acknowledging that the workforce in dementia care is becoming increasingly diverse culturally. AIMS: To trace whether there are substantial gaps between formal caretakers from different cultural groups (Israeli born Jews [Sabras], Israeli Arabs [Arabs] and migrants from Russia [Russians]) regarding their stances on the human dignity and autonomy of patients with dementia, as well as understand the meaning of these gaps. DESIGN & METHOD: quantitative analysis utilizing questionnaires that were filled-out by approximately 200 caretakers from the different cultural groups, working in a nursing home or a hospital. RESULTS: In nursing homes, substantial differences were found in the attitudes to human dignity and autonomy of patients with dementia between Russian and Arab as well as Sabra caretakers. In the hospital, there was no influence for the ethno-culture variable on dignity or autonomy. CONCLUSION: Contrary to past research, in nursing homes, significant differences were found between certain ethno-cultural groups (Arabs and Russians) regarding their stance towards the dignity of patients with dementia. Arab caretakers hold a conception of dignity and autonomy that resonates strongly with person-centered care and outweighs institutional settings as well as may be related to the fostering of virtues.

Evaluating palliative care needs in Middle Eastern countries.

BACKGROUND: Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease. OBJECTIVE: To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities. DESIGN: Descriptive survey. SETTING/SUBJECTS: Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings. MEASUREMENTS: Palliative care needs assessment. RESULTS: Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly. CONCLUSIONS: The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.

Can we overcome the effect of conflicts in rendering palliative care? An introduction to the Middle Eastern Cancer Consortium (MECC).

The Middle East has been experiencing an ongoing political conflict for the past several decades. This situation has been characterized by hostility often leading to violence of all sources. At times, such a conflict led to the outbreak of a military war, which was followed by an enmity between religious, ethnic, cultural, and national populations. In such environmental situations, palliative care professionals often confront major challenges including bias, mistrust, and mutual suspicion between patients and their treating clinicians. In order to overcome such obstacles, while rendering palliative care services, all professionals involved need careful planning and execution of their treatment plans. The latter is however possible, and sometimes successful even across lines of conflict, thereby promoting understanding, mutual respect, and tolerance between the involved communities and individuals.