Iranian relatives’ attitudes towards culturally profiled nursing homes for individuals living with dementia (original) (raw)
Related papers
Linköping University Medical Dissertations, 2018
Introduction: Today's multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with "cultural" backgrounds other than their own. The world's population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual's lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the "old" to the "new" way of life and from a life without dementia to a life with dementia involve making sense of life's changes. Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives' decisions to end caregiving at home, and Iranian families' and relatives' attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of "home". Method: This thesis is based on more than one year's fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography. Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people. Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are Dementia across cultural borders 2 cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home. In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia's personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in. Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents' sociocultural background, generational differences and incoherence, aligned with staff members' different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person's native language was not enough to claim that they were actually communicating. Family caregivers' decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person's autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents' daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them. The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, "home", was a place to be and to live.
Journal of cross-cultural gerontology, 2018
Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understo...
BMC Public Health, 2014
Background: Dementia is a worldwide health concern of epidemic proportions. Research in the field of subjective experience of dementia suffers from a lack of diversity of their participants including immigrants. Different portraits of life with dementia could help us understand how people with dementia conceptualise their experiences of dementia and how they live. Our study aimed to explore the subjective experiences of living with dementia among Iranian immigrants in Sweden. Methods: Qualitative content analysis of interviews with fifteen people with dementia from Iranian immigrant backgrounds were conducted (8 females and 7 males).
Iranian Red Crescent medical journal, 2012
Due to the increase in the number of Alzheimer's patients in Iran and also the limitation of cultural knowledge about caring of these patients, this study was designed to explore the perceptions of Iranian caregivers about caring Alzheimer patients in the elderly care homes. A qualitative content analysis method was conducted on two elderly care homes of Shiraz/Iran, during 2009-2011. Fourteen key informants (10 women and 4 men, between 25-35 years of age), who had been working in elderly care homes caring for the elderly with Alzheimer disease for about 1-11 years (Mean=30 months) were selected by purposive sampling method. The caring experience and ability of transferring their experience to others were the main criteria for selection of the participants. They were participated in 2 focus groups and 4 interviews. Nearly, 800 initial codes were extracted and categorized into 3 groups of "multidimensional care", "going along with the patients" and "need ...
Health & Social Care in The Community, 2023
Background. Dementia not only has a negative efect on a person's well-being, but it also afects the well-being of their relatives. In this study, we examined how relatives perceive the well-being of people with dementia who live in nursing homes and how nursing staf contribute to the well-being of the residents they care for. Method. A qualitative study with a phenomenographic approach was applied. Ten individual semistructured interviews were conducted, fve in Sweden and fve in Hungary. In this study, the COREQ checklist for qualitative studies was followed. Results. Te perceptions relatives had of what constituted well-being resulted in fve categories of factors that could impact negatively or positively on a person's well-being: "Nursing care is adapted to the needs of the person with dementia," "Nursing is carried out by a sustainable care team," "Te social needs of the person with dementia are met," "Te person with dementia participates in meaningful activities," and "Te person with dementia shows signs of feeling well." Conclusion. From relatives'' perspective, well-being can be created for people with dementia if nursing is personcentred and managers allow staf more time to socialize with the person with dementia. Relatives are essential cooperative partners in person-centred dementia care. Relevance to clinical practice. Person-centred care is essential. Relatives, nurses, and managers are important partners in making it possible. Competence in dementia and knowledge of values and ethics are needed to provide autonomy and well-being. Patient or Public contribution. Ten relatives were selected through purposive sampling. In Hungary, the relatives were invited to take part in the study and given information about it by an operational manger. In Sweden, this process was carried out by a dementia nurse. Transcribed content of semistructured interviews was analyzed using a phenomenographic method.
American Journal of Alzheimer's Disease and Other Dementias, 2011
Dementia incidence rates are rapidly increasing among culturally and linguistically diverse (CALD) Australians, and there is very little local research to inform practice. In response, a qualitative study employing focus group methods was undertaken with carers from 4 CALD communities-Arabic-speaking, Chinese-speaking, Italian-speaking and, Spanish-speaking. The study examined the experiences and perceptions of these family carers with regard to their caregiving for a person living with dementia (PLWD). Analysis revealed that while considerable similarities exist across the experiences and perceptions of carers from all 4 CALD communities, there were nevertheless some important distinctions across the different groups. These study findings have significant implications for those working with CALD communities.
Frontiers in Psychology, 2021
Introduction: The needs of Alzheimer's patients are very complex and diverse and many of them are considered unmet needs. Understanding and responding to the unmet and complex needs of Alzheimer's patients can affect the quality of care. Therefore, the present study aimed to explain the perception of formal and informal caregivers of the unmet needs of Iranian Alzheimer's patients.Methods: The present qualitative study employed a Directed Content Analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 19 qualified caregivers enrolled (11 informal caregivers and 8 formal caregivers) with the mean age of 46.05 ± 10.98 years in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. After recording and transcribing, the data were analyzed using the Elo and Kyngas method based on the National Consensus Project framework (N...
Frontiers in Psychology, 2021
Introduction: Due to the long-term and progressive nature of Alzheimer's disease, these patients need caregivers who will be responsible for their long-term care and who may then experience an increasing burden related to the progressive disease course, so it is important to understand the experiences of caregivers. The aim of this study was to explain the experience of family caregivers regarding care of Alzheimer's patients. Methods: The present qualitative study employed a conventional content analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 11 qualified caregivers enrolled in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. Interviews were recorded, transcribed and analyzed through Graneheim and Lundman style content analysis and data management was done with MAXQDA software. In order to achieve the accur...
Barriers in access to dementia care in minority ethnic groups in Denmark: a qualitative study
Aging & Mental Health
Objectives: To explore barriers in access to dementia care in Turkish, Pakistani and Arabic speaking minority ethnic groups in Denmark. Method: Semi-structured qualitative individual-and group interviews with minority ethnic family carers, primary care dementia coordinators, staff in elderly daycare, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework. Results: A total of 21 individual-and 6 group interviews were conducted, including a total of 35 participants. On the service user side, barriers in access to dementia care were related to lacking language proficiency and strong cultural norms, including familial responsibility for the care of older family members and stigma associated with mental illness and dementia. On the care provider side, the available formal services were rarely tailored to the specific needs of minority ethnic service users and were often considered inadequate or unacceptable. Conclusion: Care practices and perceived consequences of dementia in minority ethnic communities were heavily influenced by cultural factors leading to a number of persisting barriers to accessing dementia care services. There is a simultaneous need to raise awareness about dementia and the existence of dementia care services in minority ethnic groups, to reduce stigma, and to develop culturally appropriate dementia care options.
BMJ Open
ObjectiveA longer life expectancy increases the number of older adults who require long-term care. The presence of a caregiver at home prevents the placement of older adults in care facilities. Identifying the caregivers’ viewpoints around the care clarifies key factors in providing quality care.This study aimed to assess barriers to home care from the perspective of Iranian informal caregivers of older adults.DesignThis was a qualitative study with content analysis. Semistructured interviews were conducted via telephone in Persian with informal caregivers of older adults using open-ended questions.SettingSocial and health organisations in southern Tehran, Iran.ParticipantsSeventeen informal caregivers were selected on purpose. Participants were eligible to participate in the study if they were 18 years or older, and had at least 1 month of care experience for a minimum of 6 hours per week.ResultsBarriers to home care for older adults from informal caregivers’ points of view were ca...