Iranian relatives’ attitudes towards culturally profiled nursing homes for individuals living with dementia

Abstract

This article discusses Iranian family members’ attitudes towards the culturally profiled nursing home, their relationships with the staff, the obstacles, their hopes and their fears. This study is based on qualitative research using 29 semi-structured interviews with family members who had previously been informal caregivers, as well as using fieldwork, all in the same nursing home. The interviews were analysed by the three steps of content analysis. The results show the identification of three main categories with nine main subcategories. The categories and subcategories in the table clarify and explain how the interviewees tended to compare the situation in Iran with that in Sweden, how they perceived the situation in Sweden and finally how they also saw the culturally profiled nursing home.

Keywords

nursing home culturally profiled nursing home

Introduction

The revolution of 1979 in Iran and the many years of warfare between Iraq and Iran have wrought significant cultural and social change (Abbasi, Mehryar, Jones & McDonald, 2002; Sheykhi, 2004). Many individuals in the country chose to leave. During this exodus, nearly 2200 Iranians were granted asylum in Sweden. The number has increased greatly since then. Within 10 years there were more than 17,000 Iranians living in Sweden and according to a census taken in 2013, the Iranian population in Sweden numbered 67,211 (Swedish Migrati Swedish Migration Board, 2014).

Many of the Iranians who moved to Sweden have tried to take their parents to the country Emami et al.(2000 ) and Hajighasemi (1994). Nearness to the children in Sweden has not always been very successful (Emami & Ekman, 1998; Emami et al. , 2000; Hajighasemi, 1994). For some of the immigrants, the aging process has also involved receiving a dementia diagnosis. Presently, there are no statistics on how many elderly Iranians have been diagnosed with dementia, but many with such a diagnosis need professional care and often a nursing home. Caregiving by the family members in these cases has been more or less difficult for various reasons. Mainly, however, the family caregivers have experienced great (personal) difficulties in providing care at home, for example, due to lack of knowledge and/or of capacity to take care of a family member with dementia. Access to an ethnoculturally profiled residential care home was crucial in the making of the decision to cease caregiving at home (Kiwi et al., 2018).

In Sweden, as in most Western countries, the health care system is based on the belief in every person’s right to be provided with care under equal conditions and with respect for the unique needs of each patient (SFS, 1982; UKCC, 1992). For persons belonging to minority groups, this can be achieved by guaranteeing at least the same conditions that are available to the elderly from the majority groups; that is, the possibility of being provided with culturally appropriate elderly care. This would make it possible for the elderly to experience continuity, familiarity, security and companionship with others (Heikkilä & Ekman, 2003, p. 144). As a consequence of this, different kinds of cultural profiled nursing homes have been established in Sweden. These nursing homes provide a great degree of medical service and care for the residents by connecting to the various cultural backgrounds. One of the immigrant groups that has established culturally profiled home care and nursing homes is the Iranian group in Sweden.

In general, the ways in which immigrant families take care of their elderly family members have been discussed by various researchers (Emami & Hajighasemi, 1994, 2000). Concerning Iranian families it has been found that they often rely on the formal care in the new country, something that has been described in terms of cultural acclimatization or acculturation (Hajighasemi, 1994). This assertion may be correct, but it ignores the fact that many Iranian families often have been carers for a longer or shorter period in the new country (Kiwi et al., 2018. In many cases, the extensive life distress and the need for professional care has motivated them to move their relatives with dementia to a nursing home. This in turn been problematic in many ways – something that will be discussed in this article.

The aim of this study is to explore the Iranian families and relatives’ attitudes towards culturally profiled nursing homes in Sweden and to explore what makes the family members’ attitudes differ despite the fact that it was their decision to move their older family members into these nursing homes.

Previous research

Although there have been many culturally profiled nursing homes internationally and nationally, no study has been conducted on the relatives’ views and attitudes towards the nursing home some years after their family member has moved there.

There are a variety of profiled nursing homes in the international landscape and in Sweden there has been a long discussion about geriatric care for older people from minority cultures. According to Andersson (1996) public discussion of the issue of special governmental/public poor relief for the Sami began as early as 1851, and according to her these ‘lapphem’ or Sami retirement homes were some of the first examples of Sweden’s efforts and willingness to provide a health care need for a specific group.

Gaunt (2002) notes that discussions took place in the early 1900s about retirement homes for Sami because they had a different language and customs (lappålderdomshem). There have even been some elderly care facilities for different religious groups, such as for Jewish and Catholic peoples. During the 1980s, a number of municipalities opened ethnically oriented forms of care and established service accommodations.

Studies of ethnically profiled nursing homes for individuals with dementia are extremely few in number. The study conducted by Ekman et al. in Sweden of a Finnish nursing home is only to do with the linguistic aspect of the profiled residential care (Antelius & Kiwi in Hellström & Hydén, 2015).

According to Ejaz, Noelker, Schur, Whitlatch, and Looman (2002) and Peace, Kellaher, and Willcocks (1997), a number of studies have been done evaluating nursing homes and how families and staff should work together to provide better care to the person who lives there. In one such study, (Fink & Picot, 1995) focused on the importance of how cultural factors determine the way people experience, explain and react to caregiving. According to family caregivers, they primarily had negative conceptions of nursing homes and did not want to place their relatives in them. While some caregivers expressed relief and re-engagement, others expressed grief or regret over the placement itself and considered the nursing homes to be centres for a slow death (Ibid). Regardless of the positive or negative conception of nursing homes, caregivers were not sure about the quality of care provided by the nursing home and developed tactics like fluctuating visiting times to require the nursing home to be on alert regarding the provision of proper care for the elder. Some of the family caregivers’ dissatisfaction and discontent with the nursing home was mostly due to the home not taking enough care and the family wanting the nursing home to pay more attention to comforting the elders, with less emphasis on rehabilitation (Ibid) .

According to Linn and Gurel (1969), wives evaluated nursing homes by taking into consideration the types of care offered. Also, Ejaz et al. (2002) studied the family satisfaction with nursing home care for relatives with dementia and found that skilled nursing staff were being made to manage care-related tasks.

Based on studies of Linn and Gurel (1969) regarding family attitudes towards nursing homes, wives’ attitudes were affected by the characteristics of nursing homes, the social workers’ ratings of nursing homes and the kind of care received by patients, but attitudes could vary within two years of experience.

The study of Ejaz et al. (2002) is more focused on family attitudes and the type of care received by patients. In their study, this care is categorized into environmental and administrative services as well as direct care.

Studying the relationship between family attitudes towards the nursing home and the outcomes for patients, Linn and Gurel (1969) found that factors characteristic of nursing homes would account for the variance found in wives’ attitudes. The findings of Ejaz et al. (2002) are similar to Fink and Picot’s study (1995): they revealed that families perceived that significant improvements were needed in the environment and administration when they experienced negative interactions with other staff (excluding nusing assistents (NAs)), when the care being provided by NAs was not perceived to be sensitive, and when family members gave more help to their relatives with activities of daily living (ADL).

Findings indicated that family members who perceived that significant improvements were needed in direct care had more negative interactions with other staff and gave more help with ADL to their relatives. Families’ perceptions of improvements needed in the quality of care provided to relatives and negative family–staff interactions are closely tied to families’ perceptions of quality care. Their findings also showed that despite overall family satisfaction with care, improvement was needed in administrative services such as food, laundry and activities as well as aspects of direct care.

They also found that the wife’s pre-existing attitudes could not be anticipated based on knowledge of her husband’s age, health or her previous experience with the nursing home. Furthermore, after two years of experience, the ability to account for the wives’ attitudes to the nursing home to a degree was uncommonly high in social science data terms.

Linn and Gurel (1969) also found that comparing wives’ ratings with social workers’ ratings of the 19 nursing homes proved a great positive relationship between the two. They also noted differences in wives’ attitudes, which they considered as being highly conditioned by the kind of care received by the patient concerned.

Ejaz et al. (2002) showed that families often struggle with the idea that care provided in nursing homes is impersonal. They further came up with four themes that characterize the notions that family caregivers have of nursing home residents and of family perception of care, namely:

The experience of placement-related stress by family members.

Families’ ideas of care are related to their involvement with care provision for their relatives.

Families expect care that is individualized and sensitive.

Families and staff should have positive interactions.

Ejaz et al. (2002) also showed that the family members involved were mostly adult children (67%), female (70%), married (80%) and Caucasian (84%) with a mean age of 61 years. During visits, about 48% spent between 30 and 60 minutes whereas others stayed for a few hours with their loved ones. During the visits, more than 90% of the caregivers talked with their relatives, talked to registerd nurses (RNs ) or licensed practical nurses (LPNs) and also to NAs.

Summary

There has been much research on culturally profiled nursing homes, but not on relatives’ views and attitudes after the family member has lived there for some time.

Discussions around culturally and ethnically profiled nursing homes for the Sami began as early as, 1851 and into the early 1900s (Andersson, 1996; Gaunt, 2002). Some have opened for religious groups such as Jews and Catholics. The 1980s saw a flurry of ethnically specific care provisions opening. To date, there are very few studies into ethnically specific nursing homes for those with dementia.

Over the years, family caregivers adopted various techniques to evaluate care provided within nursing homes. Mostly, relatives want the home to focus on comfort rather than rehabilitation (Fink et al., 1997). Families often felt that environmental and administrative improvements were needed following negative interactions with other staff, perception of insensitive care provided by NAs, and in cases where family members gave helped their relatives more with ADL.

It was found that it was much easier to account for wives’ attitudes to nursing homes after the husband had been receiving care for two years. Linn and Gurel (1969) also noted a positive correlation between ratings of nursing homes held by wives and by social workers. Ejaz et al. (2002) found that family members – mostly children of the patients, female, married, Caucasian and on average aged 61 years – struggled with the impersonal nature of nursing home care, experienced placement-related stress, were affected by how much care they themselves provided, and expected individualized, sensitive care with positive interactions.

Data collection

This study was conducted during more than a year. All interviews, observations and field notes were collected at the culturally profiled nursing home for Iranians. The interview guide was semi-structured and was both supplemented and constructed during the fieldwork through interaction with residents as well as the observation of the culturally profiled nursing home. The author emphasizes the importance of gaining access to a field setting (Yin, 2011). Choice of language during the interview was based on the participant’s ability and capability (Persian, Azerbaijani or a mix of languages). The recorded interviews were then transcribed verbatim.

In total, 20 registered family caregivers/relatives were approached for participation in the study, and all accepted. Participants were all of Iranian origin, having lived in Sweden between 20 and 30 years. The age varied from 30 to 50+ years.

The contact with the relatives and informants was first made with the help of the manager and a few times with the help of the wards’ head nurse, whenever the family came to visit their family member living with dementia in the nursing home. After becoming acquainted, interviews were conducted at the interviewees’ choice of time and place. A total of 20 interviews were made and they lasted two to three hours. The foci were mainly regarding care, the choice of nursing home and their views on culturally profiled nursing homes before transferring the family member with dementia as well as after the transition.

Qualitative content analysis was used to search for potential topics and themes from the collected data of the experiences and views of relatives on nursing home. Data were analysed using the three steps of content analysis presented by Elo and Kyngäs (2008). (1) The interviews were read repeatedly to create an overall picture. (2) The data were organized by coding as phrases or sentences. This was done first by making an open coding, where relevant utterances were identified and highlighted and coded. (3) Codes were compared in terms of similarities and differences and were grouped, abstracted, and put into categories and subcategories.

The study has undergone ethical vetting by the Central Ethical Review Board (EPN) and has been approved (D nr: 2012/180-31). All participants were given verbal and written information about the study, and they all gave written consent.

Results

Analysis of the data from the 20 interviews resulted in the identification of 3 categories and 9 subcategories relevant to the study’s aim of exploring the relatives’ attitudes towards the culturally profiled nursing home. The three categories are ‘Nursing home in the country of origin’ (Iran), ‘Nursing home in the new homeland’ (Sweden) and ‘Current culturally profiled nursing home’ (Table 1).

Table 1.

Overview of main result of categories and subcategories.

Main category	Subcategory
(1) Nursing home in the country of origin	(a) Lack of proper care in Iran(b) Private nursing homes and individuals’ economical dissonance/shortage of care(c) Hindrances of home care services
(2) Nursing home in the new homeland	(a) Insufficient staff, problematic staff–patient relationships(b) Language/interaction difficulties(c) Worries
(3) Current culturally profiled nursing home	(a) Feeling of security, but still problems with staff(b) Comfort(c) Feeling of social status

The categories and subcategories in Table 1 clarify and explain how the interviewees tended to compare the situation in Iran with that in Sweden, how they perceived the situation in Sweden and finally how they also saw the culturally profiled nursing home.

(1) Nursing home in the country of origin

Lack of proper care in Iran

Most of the interviewees had not much experience of nursing homes in Iran. According to Sheykhi (2004) there are two types of nursing homes in Iran: public ones, mainly run by the government and through charities, and private homes, run by the private sector. Public nursing homes are not plentiful and getting admitted to them is not easy. The elderly person has to be on a waiting list before they can be considered for admission to such homes. On the other hand, private homes admit persons who have to pay in full for boarding and lodging. Such centres, particularly in larger cities, receive monthly admission fees that are not easily affordable for ordinary elderly people in Iran.

Sheykhi (2004) emphasis that socio-economically speaking, rich aging people do not face many problems so far as their care system and living conditions are concerned during their old age. They are well protected by their family members, and sometimes are attended to by private nurses and caregivers. On the contrary, those with modest socioeconomic backgrounds face lots of problems during their old age. While many of them are in need of immediate care in a nursing home, they cannot easily afford to get admitted in a private one, and their admission into a public one is not particularly easy due to limited beds.

Private nursing homes and individuals’ economical dissonance/shortage of care

Many of the children, without their parents with them, had left Iran for one reason or another. There were also individuals who lived alone after their spouse’s death. After various types of cultural transitions in Iran, the elderly have become one of today’s most burning debates in Iran. Organizing various public and private nursing homes has been a prominent thought pattern regarding care of lonely elderly people. Consequently many who could afford to had access to private nursing homes, which cost millions, but not all could afford this. In addition to the significant cost, not all private nursing homes have a proper service. Many of the informants thought nursing homes in Iran were not comparable with the current nursing home in which their relatives lived in Sweden. Each individual’s assessment may also have depended on the claim and expectation that the individual had. One informant stated:

Mina: I have visited some entities at a private nursing home in northern Tehran and I just felt sick… the whole corridor smelled bad. The nursing home cost very much. Most of the residents had paid countless amounts of money, without specific or certain services or care so that one would have feel at home. They shared a room and in most of the rooms were several beds and in a couple of rooms were three beds. This nursing home is completely different, this is just like one’s home.

Another informant had travelled to Iran with her mother, during which time their mother had had a stroke. After a while she thought that she would not get the doctor’s permission to return back to Sweden so she would have to involuntarily move her mother to a private nursing home. Besides the often-mentioned shockingly high prices, what was disturbing to the family was the worry about how the elderly person could adapt him/herself to a collective life that had not existed before. She says:

Narmella: I visited a few of the various residential care homes in Tehran and, this according to my relatives, the best private residential care in Tehran was named Farzaneh, but the price varied between 3 and 4 million and some rooms between 10 and 20 million. It is a lot of money. Moreover, the residents themselves had to buy the diapers, medicine and other needs such as toiletries etc.

Another problem was that although one paid 4 million tomans per month, they still they had to share a room with another person. Only those who paid over 10 million had their own room, private toilet and bathroom.

Hindrances of home care services

Home care services like nursing homes are a new phenomenon in Iranian society. This is the consequence of family structure being in transition, giving rise to the nuclear family, which in turn has itself brought changes in traditional family vision and life in Iran. Dilemmas and tradeoffs of many types mean that fewer people have enrolled in the existing private home care services. Besides, there are not many trained personnel who would like to perform the work as home care professionals. An agreement between needy families and home care companies cannot guarantee the availability of appropriate staff. On the other hand, the lack of representative comparative scientific studies of home care services makes one unable to go beyond than what is stated by informants. Not being able to provide the support that they themselves perceived as necessary could evoke feelings of inadequacy and overwhelm them with grief and disappointment.

Mandana: Yes, we have employed a person (through a home care service company), but the problem was she came one day and the next day did not come without informing us or any of us, or without resigning, disappeared… Mom had been lying on the floor at home without the help of the staff. Hardly something one can do something about from here (Sweden)… or try to find someone here. Say that I find someone, and then what? If the person would be inadequate, what can I do? There are companies (private) one pays out of their own pocket, so to speak. The first girl/staff who disappeared, we talked with the company and they sent another one that was not suitable. It took time and many times there came different people, but during that time, my mother fell down without managing to stand up. It could even have led to her death. In that period, another woman/staff who came to take care of my mother was not attentive enough and mother had fallen in the bathroom and hurt her back. She became completely disabled and consequently bedridden. Shortly thereafter mom got bedsores. This problem makes it difficult for me to accept, and the grief makes it impossible for me to avoid thinking about mom's unfortunate fates.

(2) Nursing home in the new homeland

Swedish health care provided by only Swedish-speaking members of staff has not been without problems for some residents. Language has a great significance for residents: it should not only be the source of good communication but also be able to bring mutual engagement in everyday life. Besides communication difficulties, there are also challenges with regard to the staff–patient relationship. As a result, staff turn to families for answers based on misunderstandings and difficult relationships.

Insufficient staff, problematic staff–patient relationships and language/interaction difficulties

Every step towards understanding may lead to a solution to a tricky situation. An approach and attitude of being tolerant and patient, particularly for individuals living with dementia, can be of great significance as they thus experience a sense of respect and security. Insufficient staff–patient relationships are not always due to language problems, but they certainly can be. This is one family’s statement:

Hana: In the Swedish nursing home, they had no Persian speaking staff, but the nursing home was very beautiful, clean, and nice. But during 24 hours, they called me at least 18 times to say that my father refused to change his diaper, or my father refused to eat, or refused to shower, or that he wanted to go home. I received phone calls from the nursing home staff about 2 or 3 in the morning and according to them (the staff), my father wanted to talk to me. When I spoke with him and asked him what it was he wanted, he said: I do not understand what people are saying to me here. Until we found a proper place for my father, we took him back to his home.

Worries

As a relative and a family member, one can find oneself in a peculiar situation where the person (family members) struggles with a variety of emotions.

Sureh: My uncle was not calm, he could make a fuss, be loud and noisy, and he was restless sometimes. But instead of helping him, talking to him to calm him… They gave him a lot of medicine to make him silent. It was not fun to see it. No one in the nursing home could talk in Persian to him. They could not even give him food. To them he was a hapless, helpless, incurable uncle lying there and nothing more… it worried us.

Regardless of how much one displays fluency in one’s own language, the shortage of knowledge about dementia and caregiving can give rise to uncertainty in the role that the nurse and nursing assistant has. Increased knowledge can lead to greater understanding of both the situation of residents as well as family members and relatives.

(3) Current culturally profiled nursing home

The culturally profiled nursing home was an adequate option – and to some an ideal place – for their loved one. At the same time, it was often a push–pull conflict between emotion and reason.

Feeling of security, but still problems with staff

Family members’ and relatives’ views of nursing homes should be divided into two different periods: before the transformation of some members of staff and after. Because of different comments from family members, the nursing home made a huge transformation in members of staff. In some situations, they even moved the staff who had received complaints to other nursing homes.

Almost all of the informants had been family caregivers despite various problems encountered during the time of their caregiving. Their wish was – and remained – that their loved one with dementia would be in good hands and have a more safe and comfortable life in the nursing home. To move their loved one to this nursing home was seemingly liberating. Partly because they spoke the language, the family members became certain that staff would understand the common cultural codes which the staff and loved ones with dementia had as well as his/her social needs.

Amanda: Everybody speaks in Persian, the food is Iranian food and the doctor and nurses are Iranian; we can speak with them without language difficulties. What is most positive is that each individual/resident has their own room and their own things. I do not have to sit together with others because I visit my mother. There are always staff at the nursing home and the residents do not feel totally alone. Or if mom is sleeping I still can call the ward and talk to the staff and ask how my mother has been feeling during the day… I see a lot positive in the nursing home. Despite everything, I am happy for Mom's sake also because she lives there and if she needed medical help, there are Persian-speaking staff in the ward who can help her immediately if she is in need of medical help.

Nurses and nursing assistants are important and significant persons: a good relationship with family members and relatives can reduce lots of the stress which unsurprisingly occurs. The lack of good relationship and understanding can give rise to misunderstanding.

Aida: The negative aspect of this nursing home is that the place is just too much like Iran and Iranians, both in good and bad ways. I do not know if you understand what and how I mean this. The problem is that they have no respect and understanding for both the resident as a person with dementia and the family members. When I came into the ward, I wanted to go into my mother's room and sit to talk with my mother. It seems like (mentions one of the staff's name), she stood there and waited for me to come in. She “terrorized” me with everything negative about my mother. The staff do not think that I'm a family member.

Forgetting their supporting role and the role of medical care in the nursing home can damage the cooperation between family members and staff. Thus the needed and established trust can be diminished. Stigmatizing individuals who are living with dementia is a difficult ethical issue and, in some situations, may indicate a lack of knowledge. However, the staff’s way of judging the residents living with dementia was difficult for family members to accept. This affected Aida’s attitude towards the nursing home:

Aida: One day I came to visit my mother and heard the staff saying: “Look at the writer woman, if our country's writers are such maniacs, think of those who are not writers in Iran,” Her statement hurt me deep. My mother was not and is not a maniac: she is a mother with dementia. You understand me when I say here it is too much like Iran?

Several informants, in one way or another, were satisfied with the nursing home, and just like the other informants, admired the food and the importance of language. But something particularly bothered this male informant:

Arwin: This nursing home has its own warmth and charm, but everyone who works in a Swedish residential care home and hospital feels responsibility towards their work and loves their job. Furthermore, with hand on heart, Swedish medical staff work much better than Iranian medical personnel. I have been very, very pleased with the Swedes, who address patients and family very professionally. What the staff here are doing is not morally correct. Many times some of them came to me and told me about the other residents living here and how the residents behave and so on. One who is a member of staff of a department must adhere to professional secrecy that prevails in all the public sectors, especially in health care.

The staff of the culturally profiled nursing home were different in all stages of education, e.g. some had been to gymnasium and some had not?

Age-wise, they varied too: some of the staff belonged to the pre and some to post-revolution generation, some after the revolution in Iran and some had lived the larger part of their lives in Sweden. This pattern had also its importance in many different ways of being “Iranian”-speaking staff, as some had difficulties being familiar with Iranian cultural histories and cultural codes in pre-revolution Iran.

These backgrounds in one way or another also affected the staff's attitude towards both residents and relatives. Sometimes they struggled with the way of treating the residents by not taking their social, cultural background and experience into account. Tension was created in the way that staff sometimes addressed them unusually, and even in the way that food was served. Many families complained that the staff did not know how they should dress their mother or father, for example. The family members and relatives felt that, despite several reminders, they had failed to make themselves heard.

However, in the end, the informants claimed that the nursing home had its own charm and that the problem was with some of the staff who had difficulties managing the job.

Mina: Once I called the staff in the ward and asked the staff to prepare mother; my husband will pick her up. Even though I had said that I have guests and mom has to dress cleanly/finely, they sent my mother in a strange dress style. Several times I saw my mother in an inadequate dress style in the nursing home. My mother was always a well-dressed lady. It is not her class to dress as the staff dress her. I am not against religious people, but there are individuals who work here and have learned to respect their own elderly parents, not other people’s elderly mother/father.

After the change of several members of staff, the same informant emphasized:

It is regrettable to see those individuals who are working here in a nursing home. I am happy that my mother lives here. She is not alone and I am pleased that even she herself is satisfied now.

Comfort

That countless families break up is a consequence of war and other types of political conflict in a country. In the escape, family members will easily separate in the chaos. This was part of the reality that many of the Iranians went through during the war between Iraq and Iran. To have their family members in different parts of the world can influence the decision-making process without any other family members’ being involved at close range. This is Hana’s statement:

Hana: If something should happen to my mother none of the siblings and family members will criticize me for it. For example, to be accused like I left Mom alone at home and she got a brain haemorrhage and so on is not possible now. My mother is in a nursing home and the staff take care of her… it feels really nice to not be constantly worried in many ways. To have mom in a nursing home gives me a feeling of great comfort.

Feelings of comfort may vary between individuals. One of the informants interpreted the mother’s arrival at the nursing home as a new beginning for her life. Being able to avoid all her mother’s possible health risks, as well as accusations from siblings, was cheering and comforting.

Zara: It was not good for Mom to be home with me because Mom had imprisoned herself and made me into her prison guard… Can you imagine a doctor? After Mom moved here, now at age 61, I would like to start a new life… It feels good for me and my children. It is also good that none of my siblings would complain that I have mistreated or not cared for Mom.

Social status

Several of the informants had a sense of pride and even social status for their family member with dementia having just moved to the present, culturally profiled nursing home. They were pleased to inform their relatives and friends both in Iran, Sweden and overseas that their relatives with dementia lived in a nursing home as good as a luxury hotel, with a separate room, shower, toilet, Iranian food, and Persian-speaking staff as nurses, assistant nurses and doctors.

Helen: One should not think negatively of the nursing home in Sweden. My mother lives in a luxury hotel, with its own room, toilet, shower and staff speaking Persian; they come with her medicines and food every day, while one pays millions in Iran without getting the desired service. Not only that, also at least three people sharing a room, while only very high class people with a high social status could offer more than ten million for a separate room.

Discussion

In a previous study (Kiwi et al, 2018), it was shown that family caregivers/relatives feel less tied down and much relief when their elderly family members are transferred to a nursing home. The decision to relocate their relative to a nursing home is seen as a positive one for the family caregiver. The aim of this study is to explore Iranian family members’ attitudes towards culturally profiled nursing homes when families have brought their aging elderly family members with a dementia diagnosis to a culturally profiled nursing home of their own free will.

All in all, positive feelings about the culturally profiled home seemed to dominate among the relatives. Some informants expressed relief or comfort because they did not need to worry about their loved one or have feelings of guilt or other bad feelings. Some even felt a sort of pride or enhanced status because their relative now lived in an establishment with such a high standard that one of them even compared it to a luxury hotel.

Most of the informants based their positive and negative views of the culturally profiled nursing home on the comparison between the Swedish nursing home and the Iranian nursing homes after the revolution.

Negative views of culturally profiled nursing homes in Sweden were compared to other types of Swedish nursing home. Even the staff’s daily work, behaviour, working style, working regulations and norms were evaluated in comparison with what was considered to be ‘Swedish’.

Despite expressing their appreciation to the Swedish nursing homes and having a positive view on the working style and structure of a Swedish nursing home, they often complained about the striking problems of communication between staff and elderly patients due to language difficulties.

The positive views of the culturally profiled nursing home in Sweden were expressed in comparison with the nursing homes in Iran. Among negative features which the interviewees perceived in the Iranian nursing home without having any personal experience (only through others’ stories and connected events) was, for instance, defective cleaning or hygiene, high costs for admission fees, high costs for purchase of medicine and hygiene necessities, and difficulties of the elderly person in adapting to the collective life. Obligation to share a room and toilet with other persons could also be problematic.

Further, family members’ attitudes towards the culturally profiled nursing home differed because of other underlying factors that had given rise to complaint. One such factor was a lack of care and how some of the staff did not seem to value the family member with dementia.

Lack of true presence and not genuinely engaging with the residents extended their disappointment. Lack of cooperation between the staff and family, and staff members’ ill-behaviour also came into the discussion several times.

Stigmatizing the person with dementia gave the family members a feeling that the person with dementia was an outsider and uncared for. In the culturally profiled nursing home, there are by default no relevant family members caring for the residents on a level deeper than just personal needs. Caring was at the heart of their concern, but differences in educational, social and cultural background, together with generational differences, also created dissatisfaction with the culturally profiled nursing home.

Summary

Following the findings by Kiwi et al. (2018) regarding the relief experienced by family members upon transferring an elderly relative to a nursing home, this study looks into Iranians’ attitudes upon relocating a family member with a dementia diagnosis to a culturally profiled nursing home of their own free will.

Positive feelings of relief or comfort dominated responses, with some even feeling pride due to the high standard of care provided by the home. Most respondents based their views on a comparison between the culturally profiled nursing home and Iranian nursing homes after the Islamic revolution.

Negative views of the home were evaluated alongside what the respondents considered to be typically Swedish. Despite gratitude to the home and positive views of the work style and structure, there were complaints regarding staff–patient communication due to language difficulties.

Positive views of the home were evaluated alongside respondents’ perceptions of Iranian nursing homes, despite no direct personal experience thereof. Problems with Iranian nursing homes were described in terms of defective hygiene, high costs, sharing facilities and difficulty for the patient in adapting to collective life.

Family members differed in their views of the culturally profiled nursing home due to underlying factors such as perceived lacks of care, of genuine engagement with patients, of cooperation between staff and family, and of good staff behaviour. A sense of stigma towards the person with dementia and a lack of deeper care such as can only be provided by family members were also sources of dissatisfaction.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Mahin Kiwi is a Swedish citizen, was born in Iran. Academic studies are biomedicine with specialization in special histopathology and the second education is a master of sociology (urban sociology). In addition to mathematics and biochemistry, M. Kiwi has studied cultural sociology, cultural geography, ethnology, gender study and Gender in theology. She finished all mentioned studies at the Lund University. She is a senior fencer and still active in Sweden. She was the editor of monthly magazine ARAS in Persian and Azerbaijani in Sweden.

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