From abominable to estimable (or tolerable) “home”: reconfiguring representations related to institutionalization

Fernanda da Conceição Daniel Ana Paula Brites Rosa Monteiro Henrique Testa Vicente About the authors

Abstract

This study aims to identify and analyze representations of institutionalized elderly regarding the residential facilities where they live. The hypothesis formulated in this study is that elderly people, when institutionalized, may change their representations, which entail negative evaluative contents, depending on the scenario they encounter. This study used a qualitative approach, with a semi-structured interview specifically designed for empirical data collection. Serge Moscovici’s social representation theory was used as the theoretical framework to test the hypothesis that the experience of being admitted to and staying in a residential care facility for the elderly can contribute to changes in the peripheral system of social representations of the object, reducing the negative weight on its central core as a hegemonic representation. The results indicate that transformation of social representations is associated with experiential and contextual factors, occurring mainly as a result of new social practices within institutional daily life. Two of the major contributions of this study consisted in the identification and analysis of a tripartite typology of practices driving transformation of negative representations regarding residential care facilities, namely: (1) physical and material comfort; (2) escape from loneliness; and (3) preservation of family connections.

Keywords:
Aging; Institutionalization; Social Representations

Introduction

Residential facilities for elderly people (designation used in Portugal, equivalent to long-term care institution for the elderly in the Brazilian context), until recently called “nursing home” (see Portugal, 2012), carry a stigma of negative social representations inherited from the past. These institutions, which emerged in a certain period of history, are still associated with negative symbolic representations that emphasize, according to Fernandes (1997FERNANDES, A. A. Velhice e sociedade. Oeiras: Celta, 1997.), the legacy received from the past of asylums and mental institutions for marginal old age. These negative social representations involve expectations, uncertainties and fears of living in this type of care facility. The hypothesis formulated in this study assumes representations associated with residential facilities are not static or unalterable, as they may change during a particular experience in an institutional context. The results seem to support this hypothesis, particularly when changing the negative representations of the institution, which over time seems to be reconfigured as a place of “renewed sociability” and positive evaluative content.

The theoretical framework that supported this analysis was the theory of social representations developed by Serge Moscovici (1979MOSCOVICI, S. El psicoanalisis, su imagen y su publico. Buenos Aires: Huemul, 1979.). In line with the concepts of Moscovici (1976, 2003), this study adopted the definition of social representation proposed by Jodelet (1994JODELET, D. Représentations sociales: un domaine en expansion. In: JODELET, D. (Ed.). Représentations sociales. 2. ed. Paris: Presses Universitaires de France , 1994. p. 31-61., p. 36): “a specific form of knowledge, socially worked out and shared, having a practical and convergent aim in building a common reality which is used for a social group.” This approach allows an articulation between the micro and macro levels of analysis, the individual and the broader and structuring social cognitions, determining symbolic exchanges, expectations of subjects and even their identity constructions. Classifications or categorizations are built through social representations. Once internalized and consolidated, they determine ideas and values, thus conditioning experiences. This study aimed to understand how older people’s experience of being admitted to and staying in a residential care facility can contribute to changes in the peripheral system of social representations of the object, reducing the negative weight on its central core as a hegemonic representation. In this sense, the relationship between social representation stability and flexibility is questioned. This study also attempted to understand how the transformation of social representations of residential facilities for the elderly takes place as a result of experiential and contextual factors or social practices, based on the approach that claims a relationship between social representations and practices. In this sense, according to Abric (1994ABRIC, J.-C. Pratiques sociales, représentations sociales. In: ABRIC, J.-C. (Ed.). Pratiques sociales et représentations. Paris: Presses Universitaires de France, 1994. p. 59-82.), any contradiction between representations and practices leads to transformations in the former. But for practices to influence representations, they should (1) be recurrent among the study population; (2) be materially or symbolically valued, or allowing value maintenance; and (3) the implications of practices must be specific and limited in the social universe. That is, they must not evidently address other representations or strongly focus on ideology (Rouquette; Rateau, 1998ROUQUETTE, M.-L.; RATEAU, P. Introduction à l’étude des représentations sociales. Grenoble: Presses Universitaires de Grenoble, 1998.). This approach considers that social representations are not immutable, but rather dynamic and subject to reconstruction within social groups with singular characteristics. That is, transforming practices can produce representations specific to a social group that experiences a contradiction between previous abstract representations and its own contextual and subjective experiences. Although social representations have an abstract and resilient central core that structures and preserves them, a new event can generate adaptations (Moliner, 2001MOLINER, P. Formation et stabilisation des représentations sociales. In: MOLINER, P. La dynamique des représentations sociales. Grenoble: PUG, 2001. p. 15-41.). Transformation of representations happens when new practices directly challenge the meaning of its central elements, without the possibility of the peripheral system rebuilding the defense mechanisms; and when it happens, the central core of the representation is changed by the sheer importance of practice. Vala (2002VALA, J. Representações sociais: para uma psicologia social do pensamento social. In: VALA, J.; MONTEIRO, M. B. (Ed.). Psicologia social. 5. ed. Lisboa: Fundação Calouste Gulbenkien, 2002. p. 353-384.) explains this possibility of transformation of representations in relation to the context and practice, distinguishing representational behaviors from situational behaviors. In representational behaviors, the characteristics of the immediate environment where the action takes place, not related to the representation, would be less important, thus the content of social representations would have a significant predictive value regarding behaviors/actions. In situational behaviors, the characteristics of the context, not the social representation, are more evident and, therefore, would guide the behavior; in this case, social representations would be less important in predicting behaviors.

According to Wachelke and Camargo (2007WACHELKE, J. F. R.; CAMARGO, B. V. Representações sociais, representações individuais e comportamento. Revista Interamericana de Psicología, Glen Allen, v. 41, n. 3, p. 379-390, 2007.), transformation of representations can result from changes in the relationship between group and object and in intergroup or contextual relations. According to a literature review conducted by these authors, transformation of social representations occurs when groups are forced to adopt practices contrary to its core elements. Based on the concept of reversible situation, Wachelke and Camargo (2007) identify four possibilities: (1) when a representation does not change because the situation leading to new practices is seen by the subjects as reversible; (2) when a representation changes due to a “resistant transformation” because the new practices can be managed by the peripheral system of representations; (3) when a representation changes “progressively” because the new practices do not fully contradict the central core and new elements are added to it creating a new representation; and (4) when a “brutal transformation” occurs because the new practices take over the central core.

This study intends to explore how practices and specific situations in context place the elderly in a contradiction between the initial negative expectation, based on the central core of meanings that include institutionalization and residential facilities for the elderly as rupture, loss and other negative characteristics, and a practical/daily experience in this new residential scenario that can be perceived as a positive reformulation of identities, sociabilities and “lives”.

Residential facility for elderly people and its representations

A number of social processes led to a hegemonic social representation of residential facilities for the elderly as something negative, linked with ideas of end, rupture, social death and imprisonment. However, new realities and social pressures have promoted a requalification of these instruments and their social representation, as they became necessary due to exhausted informal and family social protection, which traditionally and stereotypically was assumed by women, in a reproduction of asymmetrical sexual roles. Changes in family structures changed the lifestyle of older people, consequently changing the meaning and practice of family responsibilities. However, tension exists between the recognition of limitations in informal family care structures (Nogueira, 2009NOGUEIRA, J. M. A dependência: o apoio informal, a rede de serviços e equipamentos e os cuidados continuados integrados. Lisboa: Ministério do Trabalho e da Solidariedade Social, 2009.) and the undesirability of institutionalization as a perverse effect of formal care structures.

Until recently, the literature reported the need to emphasize the responsibility of the State, highlighting an urgency of State interventions in the field of elderly care, especially when family members - due to economic, geographical or family issues - are unable to handle both professional life and care for dependent elderly people (São José; Wall, 2004). The Portuguese State and its social protection system are family based (with an unformulated but ever-present assumption that families will care for their members) and, within the family system, women assume care for dependent elderly people, although not explicitly. The high rate of women working in full-time jobs in Portugal since the 1960s, the limited coverage of the family support network, and gender inequality in household and family chores have contributed to overload Portuguese women with care tasks. This issue has been discussed in several studies that highlight the relationship between social protection policies and gender social relations in Portugal (Ferreira; Monteiro, 2013FERREIRA, V.; MONTEIRO, R. Trabalho, igualdade e diálogo social: estratégias e desafios de um percurso. Lisboa: Comissão para a Igualdade no Trabalho e no Emprego, 2013.).

Gradually, and in response to international demands, the Portuguese State, through the Third Sector, made considerable efforts to increase the capacity of social actions/responses for the elderly population. Then, in 2015, a 57% increase was reported in relation to 2000, with 111,000 additional places in installed capacity in a space of just over a decade. Among the social actions/responses for the elderly population, the Home Support Service has reported the highest growth (71%), followed by the Residential Facility for the Elderly (66%) (Portugal, 2015, estimates from the authors).

On the other hand, the World Health Organization reported that older adults mostly prefer to receive care at home (WHO, 2005). This perception of home care seems to be shared, not only by patients, but also by family members and technicians. One of the participants in a study conducted by Ayalon, Kaniel and Rosenberg (2008AYALON, L.; KANIEL, M.; ROSENBERG, L. Social workers’ perspectives on care arrangements between vulnerable elders and foreign home care workers: lessons from Israeli/Filipino caregiving arrangements. Home Health Care Services Quarterly, Philadelphia, v. 27, n. 2, p. 121-142, 2008., p. 128), when talking about the organization of care for vulnerable elderly people, said that “people go to a residential facility for elderly only if there is no other choice. First they try to stay at home.” About older people’s preference for home support, “perhaps for sentimental rather than practical reasons” (European Union, 2011, p. 94), and possibly due to the costs of formal support in collective facilities, several countries (the United Kingdom, the United States, Canada, and Japan) created investigation programs and strategic and action plans to encourage elderly people to stay at home (Kerbler, 2012KERBLER, B. Ageing at home with the help of information and communication technologies. Acta Geographica Slovenica, Liubliana, v. 52, n. 1, p. 165-188, 2012.). Also, people talk of a reprivatization process nowadays for care recentralization within the family, more specifically provided by women.

After this contextualization of all different types of actions/responses for the elderly in contemporary times, this study will now focus on the residential facility for the elderly. Institutionalization in this structure becomes an option especially for older people who are at risk of losing independence, or those who no longer have it. This option may not be the most favorable or desirable. However, it is certainly necessary in many situations, given the limited possibilities for Portuguese families to continue providing such care, due to a high rate of women in the labor market, among other factors.

In Portugal, the number of people living in residential facilities for the elderly has increased significantly. Since 1974, the number of these facilities has grown more than ten times: by 1974, there were 200 residential facilities for the elderly versus 2,413 in 2017, with capacity for 71,803 people (Daniel; Monteiro; Ferreira, 2016DANIEL, F.; MONTEIRO, R.; FERREIRA, J. Cartografia da oferta pública e privada de serviços dirigidos à população idosa em Portugal. Serviço Social & Sociedade, São Paulo, v. 2, n. 126, p. 235-261, 2016., estimates from the authors).22PORTUGAL. Ministério do Trabalho, Solidariedade e Segurança Social. Gabinete de Estratégia e Planeamento. Carta social. Available from: <https://bit.ly/2oAy9MN>. Access: Sept. 30, 2019.

Given the estimates of population aging, the number of older people in these structures is expected to increase. Regardless of whether the current sociodemographic context favors growth of these actions/responses, it is important to deepen investigation on these residential facilities considering that, according to the literature, the admission and transition to institutional life may negatively affect the psychological well-being of some residents, making them feel powerless and apathetic (Brownie; Horstmanshof, 2012BROWNIE, S.; HORSTMANSHOF, L. Creating the conditions for self-fulfilment for aged care residents. Nursing Ethics, Thousand Oaks, v. 19, n. 6, p. 777-786, 2012.).

Older people living in institutionalized contexts tend to constitute a heterogeneous group, even though the majority involves situations of dependence; that is, situations in which support from other people is needed to perform their daily activities. The way many of these residential facilities are organized and their location - often relatively distant from the urban area - do not favor contact with the external environment. Daily activities are all performed in the same place, with a significant absence of decision-making by residents (which is not promoted or encouraged) and a general tendency of professionals to consider dependence as a homogenizing category (Leturia; Yanguas, 1999LETURIA, F. J.; YANGUAS, J. Intervención en ámbitos residenciales. In: TROCÓNIZ, M. I. F.; MONTORIO, I. (Ed.). Gerontología conductual. Madrid: Editorial Síntesis, 1999. p. 181-209.).

Given the characteristics of residents, institutional life tends to limit their opportunities to exercise their rights (Faria; Carmo, 2015FARIA, C. G.; CARMO, M. P. Transição e (in)adaptação ao lar de idosos: um estudo qualitativo. Psicologia: Teoria e Pesquisa, Brasília, DF, v. 31, n. 4, p. 435-442, 2015.), especially their right to self-realization (Brownie; Horstmanshof, 2012BROWNIE, S.; HORSTMANSHOF, L. Creating the conditions for self-fulfilment for aged care residents. Nursing Ethics, Thousand Oaks, v. 19, n. 6, p. 777-786, 2012.). Then, these facilities seem to present characteristics that bring them closer to the concept of “total institutions” (Goffman, 1992GOFFMAN, E. Manicómios, prisões e conventos. São Paulo: Perspectiva, 1992.). According to Goffman (1992, p. 11), “a total institution is a place of work and residence where a great number of similarly situated people, cut off from the wider community for a considerable time, together lead an enclosed, formally administered life.”

Pictures and images are produced regarding these residential facilities, not only about the institutions themselves, but also about old age in general, associated with dystopian images of a stage of life with reduced possibilities of a public identity and that invariably involves the need for support and resources. In this sense, it is relevant to question if the experience/practice of living in a residential care facility contributes to changes in the generalized and widely disseminated representations about this type of social response (and also in the ingrained negative representations about the aging process).

Methodological aspects

This study used a qualitative approach, with direct observation and interviews for data collection and subsequent content analysis by independent judges/coders who sought to describe, decode, interpret and highlight the representations of older people about the institutional reality, before and after being in contact with it. The categories and patterns emerging from the narratives of interviewees were subsequently debated and the inclusion of narrative units in each category depended on the approval of all the researchers involved. This study obtained the approval of the Research Ethics Committee of Instituto Superior Miguel Torga, and it observes the principles defined in the Declaration of Helsinki.

What happens in a residential environment is related to different variables that dynamically interact with each other. For this reason, this qualitative exploratory study used semi-structured interviews, which were conducted in an informal and calm environment; the researcher’s intervention, when necessary, was limited to reformulating questions and recentralizing discourses.

This study was conducted in a Private Institution of Social Solidarity (IPSS - Instituição Particular de Solidariedade Social) located in the central region of Portugal, which presents three social actions/responses for the elderly: a residential facility for 51 older people, day care center, and home support service.

In Portugal, the social actions/responses for the elderly are provided by for-profit and non-profit entities. According to Carta Social 2013 (Portugal, 2013) non-profit entities are entities from the solidarity and public networks. The latter are, according to Almeida (2010ALMEIDA, V. A. S. Governação, instituições e terceiro sector: as instituições particulares de solidariedade social. 2010. Dissertação (Doutorado em Economia) - Universidade de Coimbra, Coimbra, 2010.), residual (less than 1.5%). Solidarity network entities have distinct legal categories, such as associations, mutualist entities, co-operatives and foundations (Daniel; Monteiro; Ferreira, 2016DANIEL, F.; MONTEIRO, R.; FERREIRA, J. Cartografia da oferta pública e privada de serviços dirigidos à população idosa em Portugal. Serviço Social & Sociedade, São Paulo, v. 2, n. 126, p. 235-261, 2016.). These solidarity network entities may apply for IPSS status, provided that they have specific social purposes. Because they are not for-profit entities, they have the benefit of tax exemptions and other financial support, whose amount is defined by cooperation agreements signed between the associations that represent them (that is, Confederação Nacional das Instituições de Solidariedade, União das Misericórdias Portuguesas, and União das Mutualidades) and the Ministry of Solidarity and Social Security. The cooperation agreements define guidelines, methodologies and priorities for the cooperation between the State and the IPSS, and the amounts of the State funds granted to the IPSS by social response/user. Application for admission to these social responses can be made through Social Security services or directly at social support institutions.

The services provided under the social response of “residential facility for the elderly” refer to housing, food, personal care and comfort, medical and nursing care articulated with health services, laundry, travel abroad, and finally, entertainment activities. The work staff has 37 employees, including one manager, one physician, two nurses, two social workers and one sociocultural animator, the remaining professionals are operational assistants and/or geriatric assistants.

Elderly people who had been for less than two years in the residential facility were selected to participate in this study, allowing an access to representations in the pre-institutionalization period (which in these people could still be present in their memories). Exclusion criteria were cognitive deficit/impairment and difficulties in verbalization which hindered the interview. All elderly people who met the inclusion criteria agreed to participate in the study as volunteers. Eighteen elderly people were interviewed. The interviews took place in the physical space of the institution after management board approval, signing of the informed consent, and guarantee of interviewee anonymity. The age of interviewees ranged from 72 to 94 years. The educational level of the sample was low, with more female illiterate participants. The percentage of female participants was higher than male participants (61% versus 39%) and the percentage of married participants was the same as the percentage of widows/widowers (one participant got married after admission to the residential facility).

The interviews and direct observation records were fully transcribed, subjected to triangulation with other investigators, and then processed on MAXQDA version 11. After content processing and analysis, analytical categories were produced, which identified the topics contained in the results below (all names of interviewees and technicians working in the institution presented below are fictitious).

Results

Previous representations of the residential facility for the elderly determining an attitude of rejection

The interviewees shared dominant social representations associating the residential facility for the elderly with negative elements. Indeed, the participants mention words like “prison,” “another world,” “cemetery,” or “end.” A rupture with the life they had so far and separation from the family characterize the previous idea of moving to a residential facility for the elderly. This idea or representation determined a psychological and (sometimes) tangible rejection identified in the following excerpts.

I always said that I wouldn’t come to the nursing home [residential facility for the elderly]. I thought a person would get imprisoned. I thought I wouldn’t feel good here. I often said to my children: “Don’t be silly! There’s no way I’m moving into a nursing home!” (Inês, 88 years old)

I didn’t know what an old people’s home was, I didn’t know what it was! I had no idea, I thought I’d always be young! That’s what we think. What we’ve become! What we used to be! And what we are now. (Etelvina, 86 years old)

I thought it was the end of everything... It’s like raising an animal intended for human consumption and then having it slaughtered. I’m not ashamed to say that when Laura [an employee] picked me up, I cried... I’d rather be taken to the cemetery. (Romero, 88 years old)

Based on the testimonies, institutionalization was not accepted and the representation of this residential space seemed to be associated with dependence and control. Although many interviewees said that they had never been in this type of facility, they associated the institutionalization process with loss of freedom and closeness to death: [I thought] I am going to another world. I’m going to the cemetery. (Francisco, 87 years old). I thought it was the beginning of the end. (António, 72 years old)

The residential structure for the elderly, besides a general negative connotation, was evidently also associated with the end of life.

Residential facility for the elderly as abstraction: unknown until arrival, imposed by necessity

Residential facilities for the elderly carry a stigma for certain generations/cohorts and, perhaps for this reason, admission to these structures is not previously discussed in the family. Many interviewees had no opportunity or possibility to visit the residential facility before moving in, which may have increased their feelings of pain, hurt and emotional cut-off:

No, before moving here, I’d never entered this place. When I came it was to definitely live here, I don’t know, I never came before. Nobody invited me to come here! I received an order to come so let’s get moving. (Francisco, 87 years old)

I had never come to this nursing home, except on the day I moved here. I never set foot on this place. It never happened that someone said something like, come on, let’s go see it. I came to a place and I didn’t know what it was, I didn’t know a thing about its environment. Nobody said to me let’s go see it; but they said it was good so I came. (Inês, 88 years old)

In most cases, family members seem to assume the role of mediators in the process of moving to a collective residence, as they seem to have in their possession all the information about the chosen institution.

Faced with the idea of moving to a collective residence, and in the absence of concrete experiences, people seem to use shared cognitions that reinforce the central core of social representations about the phenomenon that are mostly negative. Such reinforcement of negative representations is aggravated by a sense of betrayal, resignation and lack of autonomy in the decision process, because their children decided on their behalf about the institutionalization, stripping away from the elderly part of their identity as independent and autonomous persons. In this sense, the feelings of rejection and pain become worse as they move to a new scenario. The testimonies are eloquent: When I came here I was feeling deeply hurt (Joana, 83 years old). I had to accept that life is like that. My heart was a little sad... I felt alien, I found myself alien... I felt it in such way that I can’t explain! When I came here, it was like a dog pulled on a leash (Francisco, 87). It has to be, it has to be (Catarina, 85 years old).

Sensations of inevitability, powerlessness and resignation are emotions felt during the process of moving to a residential facility. The testimonies indicate this facility may be understood as an instance charged of harboring rejected elderly people (Souza, 2003SOUZA, J. L. C. Asilo para idosos: o lugar da face rejeitada. Beira do Rio, Belém, ano 4, n. 1, p. 77-86, 2003.).

I said to a neighbor: “I’m thinking about moving to a nursing home.” She said she would also move to a nursing home if her husband had this condition. Today she hides when she sees me! (Joana, 83 years old)

They said what I used to say: “I’ll never move to a nursing home. God forbid! God forbid! I am not going to a home.” Today, just like me, they are living here too. (Inês, 88 years old)

My daughters can’t and won’t lose their jobs, I have to go! Do I have another option? I also said I’d come when I couldn’t handle it anymore, the best thing was to move there. My daughter said to me: “She [Francisca] has already moved there, and you, less capable, don’t want to go?” You know, they wanted release from this burden. (Catarina, 85 years old)

Registration in the residential facility for the elderly was mostly made by the children. It seems that institutionalization has been proposed or even imposed on them as a necessary evil. These excerpts highlight the impossibility and/or unavailability of the “daughters,” implying the burden of handling their professional life and elderly care, and the example of neighbors, partners in the same ‘inevitable’ destiny. After being presented with this option, older people seem to resign themselves to institutionalization. In fact, most residents are aware that they had no option outside the institution, which probably caused their passivity in the face of such an important decision, also implying the idea that institutionalization is for dependent elderly people requiring special care, which is inevitable with advanced age. As stated by Mazza and Lefèvre (2004MAZZA, M. M. P. R.; LEFÈVRE, F. A instituição asilar segundo o cuidador familiar do idoso. Saúde e Sociedade, São Paulo, v. 13, n. 3, p. 68-77, 2004., p. 74),

the elderly, as they present deficiencies and dependences, free caregivers from the guilt of institutionalization, since care should be provided by trained professionals who, in their imagination, are the best persons to provide the care they need.

The experience of losing identity when moving to a residential facility for the elderly

Less positive considerations expressed in the interviews when addressing perceptions before moving to a residential facility for the elderly may somehow be associated with taboos and prejudices regarding institutionalization or even fear to face the reality of leaving their homes and personal objects. As mentioned by one of the interviewees, “our house, our passion” (“nossa casa, nossa brasa”, Portuguese traditional proverb). The testimonies also show an element of social shame associated with moving to a “nursing home”, but is this feeling of shame associated with the institutionalization itself or with what it means for the elderly person? Can this feeling be based on the perception (possibly reinforced by the social environment) that family members failed to assume a caring role that is theirs from the elderly persons’ perspective (despite the rational arguments they manage to include in their speech to justify the unavailability of their family)?

I am impressed [when seeing dependent elderly people]. A person like me, who has some educational level, feels sad to be inserted in this environment, it’s more than normal. You see things you shouldn’t see. (António, 72 years old)

This excerpt illustrates losses that interfere and shape identity. According to Kastersztein (1997KASTERSZTEIN, J. Les stratégies identitaires des acteurs sociaux: approche dynamique des finalités. In: CAMILLERI, C. et al. (Ed.). Stratégies identitaires. Paris: Presses Universitaires de France , 1997. p. 27-41., p. 28), identity is “a polymorphic, dynamic structure whose elements are the psychological and social aspects of a relational situation, at a given moment, of a social agent (individual or group).” Also according to the author, the identity structure is not entirely plastic, as it has a relatively stable hard “core” of identity characteristics. A proof of this stability refers to the challenges experienced by individuals or groups when they redefine themselves in a new social context. If from a theoretical standpoint we consider that the notion of identity is dynamic, interactionist and social (Lipiansky; Taboada-Leonetti; Vasquez, 1998LIPIANSKY, E.-M.; TABOADA-LEONETTI, I.; VASQUEZ, A. Introduction à la problématique de l’identité. In: CAMILLERI, C. et al. (Ed.). Stratégies identitaires. Paris: Presses Universitaires de France , 1998. p. 7-26.), then it is easy to realize that when ruptures and losses are experienced in the institutional scenario, the subjects’ identity is updated in a raw and harsh manner, almost like a mutilation.

In the contemporary world several changes occur, both in private and professional life, and also in symbolic beliefs (Dubar, 2000DUBAR, C. La crise des identités. Paris: Presses Universitaires de France , 2000.). In this scenario, identity crises are experienced that are related to the social construction of old age as a loss:

loss of desire, boredom, lack of activity are inevitable signs of belonging to the elderly group. […] The elderly themselves have a negative and stereotyped representation of the group of older people based on depreciated characteristics, attitudes and behaviors. (Dressen, 2001DRESSEN, C. Communiquer pour les 65-85 ans: comite français d’éducation pour la Santé. Retraite et Société, Paris, v. 34, n. 3, p. 203-206, 2001., p. 204)

One of the aspects most highlighted by the interviewees as loss or disruption with strong symbolic effects was the loss of possessions and management of their assets, including money.

What hurt me the most was losing my independence, my car and my home. (Estela, 85 years old)

What hurt me the most was not coming to this home, it was when they took my money. I felt I was no longer in charge of my things. I worked hard to save money. (Aurora, 86 years old)

To aggravate this situation of identity transformation, the interviewees also mention an issue of territory:

I don’t like when they sit in my armchair. I’ve sat there since I came here. Some people sit there, and after a while they’ll sit somewhere else… Why do they change places like this? (Catarina, 85 years old)

I have no key in my room. I had to hide my things in the drawer, as my room is near the bathroom, which is frequented by so many people who have nothing [no possessions]. But it’s about the employees that I’m afraid, not the elderly people. (António, 72 years old)

Why do we need a personal space? According to Fischer (1994, p. 25-26),

a particular characteristic of the relationship with space is our tendency to occupy a territory and control it, and exercise a right of possession there; then it corresponds to a zone of influence with which we can identify; we can see in it an extension of oneself.

The literature suggests that personalization accentuates personal identity, informing others about shared values and lifestyle (Fisher, 1994FISHER, G.-N. Psicologia social do ambiente. Lisboa: Instituto Piaget, 1994.; Kuhnen et al., 2010KUHNEN, A. et al. A importância da organização dos ambientes para a saúde humana. Psicologia & Sociedade, Belo Horizonte, v. 22, n. 3, p. 538-547, 2010.). Personalization allows residents to have “feelings of control, reflected in experiences of competence and dominance, reinforcing personal identity while communicating values and lifestyle, enabling the creation of social networks” (Kinney et al., 1985KINNEY, J. et al. Personalization of private spaces in congregate housing for older people. In: ANNUAL CONFERENCE OF THE ENVIRONMENTAL DESIGN RESEARCH ASSOCIATION, 16., 1985, Nova York. Proceedings… Washington, DC: Environmental Design Research Association, 1985., p. 194). We dominate a territory when we control it. When unwanted intrusions occur, more or less aggressive reactions result from the perception that such space is an extension of ourselves.

Still regarding privacy and identity issues, the authors found surprising some of the testimonies that addressed personal and hygiene care. The explanation to these testimonies may be related to the age discrimination to which they are subject, making it a common and banal institutional practice to violate their privacy: I had so many problems when I was in the hospital, I was no longer ashamed. I had no problems at all (Joana, 83 years old). I never had a complex with it. It has to be this way! I can’t take a shower alone. It costs me nothing at all. I came from the hospital with this care they had to do. I was already used to it (António, 72 years old). At first it cost me a little, now it costs nothing (Catarina, 85 years old).

I don’t know! In our houses I never took a shower, God help us! I didn’t know if they would give me a shower. The first bath they gave me, I was amazed! The shame is lost, we get to the point of losing shame. (Etelvina, 85 years old)

Reconfiguration of negative evaluation: transforming representations through practices

When asked if their idea of a residential facility for the elderly was the same or if it had changed, the testimonies are expressive:

I had no idea of what it was like. I never thought it was so good! I thought it was different than it is, in every aspect. It’s better than I thought, I’m very glad to be here. (Francisco, 87 years old)

It’s not as bad as people said. It’s not a big deal. Many times we feel bad, but it’s not about our nursing home, it’s about our dependence. I even put on some weight after I came here. (António, 72 years old)

If I had stayed in my house, I would’ve died! […] I thought people came here and didn’t talk. I never thought I’d have a life as good as I have today. […] On the first day I felt good, I immediately felt good. I was home alone. I was alone for 30 years! I didn’t sleep at night, I woke up and kept thinking about things. (Aurora, 88 years old)

When elderly persons become part of the institutional reality, it seems increasingly familiar and reveals less negative aspects than those previously envisioned. The aspects that most contribute to this positive reevaluation are the escape from loneliness and intensification of interactions in the residential facility; along with improvements in material and physical care. It means the experience and practice of living at a nursing home distances people from the abstract representation they had, reducing the negative burden of the situation and highlighting material and symbolic gains.

Considering that practices experienced by subjects may have the ability to change representations (Rouquette; Rateau, 1998ROUQUETTE, M.-L.; RATEAU, P. Introduction à l’étude des représentations sociales. Grenoble: Presses Universitaires de Grenoble, 1998.), this category of practices driving positive changes were explored in the interviews and categorized into three groups: (1) material and physical comfort; (2) escape from loneliness; and (3) family connection.

Oder people who are institutionalized today grew up and lived in a historical and cultural context that taught and encouraged them to be happy/contented with very little. According to Hoff (2008HOFF, A. Tackling poverty and social exclusion of older people: lessons from Europe. Oxford: University of Oxford, 2008., p. 12),

the highest prevalence of old-age poverty can be found in Southern Europe, even surpassing relative poverty levels in Central and Eastern Europe: a third of Portuguese pensioners and nearly 30 per cent of Greek and Spanish counterparts live in poverty.

Indeed, most people who are users of the institution analyzed in this study have a low socioeconomic status, many of them living on low pensions. Housing conditions of the elderly population in Portugal, especially in rural areas, are very limited in terms of thermal comfort, hygiene and internal mobility. In the residential facility for the elderly, the situation of comfort and physical care is drastically changed, frequently for the better. Their basic needs are met, while outside the situation is different, as it is difficult for most elderly people to keep their homes warm in the winter, take prescribed medicines properly, and respect a balanced diet. In this sense, the gains seem to exceed the negative representation, placing the subject closer to a reality that contradicts the latter. The same holds true for health care, with the ongoing monitoring by doctors, nurses and auxiliary personnel contributing to an increased adherence to prescribed drug treatments, as well as notable gains in terms of access to other health services. As noted in the following excerpts, a number of dimensions confirm the gains in material and physical comfort:

If I had stayed in my house, I would’ve died. I consider this facility as a hotel. If I were in my house, it would be cold and here I have many friends from [former residential area]. I don’t see problems here, only the bell ringing. It used to be heard all over the place, and now it’s heard in the nursing room only. (Manuel, 90 years old)

I came here two days before I came for good. They gave me a snack and the place was so warm that I didn’t want to leave, besides I laughed with the girls [employees]. When I went back to my house, it was so cold, so when I came to the nursing home I was very pleased. (Augusta, 84 years old)

If they told me to go home, I wouldn’t come back. I think about the colleagues and the services we have. At home, I’d never have the same thing. (Maria, 88 years old)

There’s no one who eats at home like we eat here. You know, the problem is that many of them never knew what it means to eat well, so they find it strange. (Manuel, 90 years old)

I don’t want to go home now. It would be hard for me to leave [the residential facility]. I am no longer willing to live alone, I went through a lot [when I was alone], one night I fell on the floor in my room, my legs were stretched and I couldn’t get up. (Alice, 86 years old)

Another aspect highlighted in the interviews was the importance of integration promoted in the residential facility for the elderly, which contrasts with the loneliness they felt at home. Living together, despite reports of conflicts with colleagues, is always highlighted as something positive and satisfactory. Social integration, new social relations and reciprocity with peers seem to have great importance in their assessment of their current situation and the experience of institutionalization. Emotional well-being greatly depends on relationships with the world and other people. Being in a group, sharing feelings, talking and listening are important for keeping the balance, thus reconfiguring the identity from “being isolated” to “being integrated.”

I wouldn’t choose my house over the nursing home. Here I have friends and boys I like to talk to, for example, Mr. Martinho [user of the residential facility for the elderly]. (Joaquina, 82 years old)

I have nothing bad to say about the employees. Some like to make jokes, others don’t! When they make jokes, they even pinch and hug me. I like the girls [auxiliary personnel] very much and I like the nurses too. I have a lot of affection from my family and a lot of respect. Everyone talks to me. (Manuel, 87 years old)

Finally, one of the aspects highlighted in the interviews was the perception that moving to a “collective housing” did not represent at all a loss of bonds with family members. The idea of breaking away with their families, which frightened them and weighed negatively on the representation before moving to the facility, changed when some interviewees realized the relationship with their relatives was maintained and, in some cases, improved, because it became free of embarrassment and problems:

People tell me that I don’t even look the same, that I am better. I now have my children and friends visiting me, gymnastics and handicrafts that are very good for moving and making me busy. (Inácia, 86 years old)

I have a good life. My children come here, and my daughter calls me every day! (Aurora, 88 years old)

The participants recognize that not everyone has this close relationship with the family, but they stress its importance. Anyway, the integration and colleagues they have at the facility make up for isolation, regardless of the frequency of visits from their children and other family members.

This study tested the scope of change in the negative image of living in a nursing home by asking the interviewees if they would like to go back to their prior homes with the same comfort and safety conditions offered in the residential facility, but this possibility was not enough to convince the interviewees. It seems that such institutional reality, which was so distant and discomforting to them, currently offers something that would be impossible to have at their previous home. The residential facility for the elderly can be beneficial when it fosters new experiences and promotes improved quality of life. For Santos and Encarnação (1997SANTOS, F.; ENCARNAÇÃO, F. Modernidade e gestão da velhice. Faro: Centro Regional de Segurança Social do Algarve, 1997.), elderly people with physical limitations at home tend to have a lonely lifestyle. Having elderly people in their family environment may not be the best option in certain situations. Houses are usually designed for autonomous people and increasing dependence can lead to hostility towards spaces the subject is unable to enjoy.

No, I wouldn’t come back. I think I’ll go to the cemetery from here. Even if my children invited me to live with them, I wouldn’t go. [What if you had a full-time nurse and doctor?] I wouldn’t go either. There are many people here to talk to, I like to see people discussing, even when the employees are a little nervous, I like to see it all. I feel alive. (Inês, 88 years old)

Final considerations: What are the challenges of and the directions towards humanized integration into residential facilities for the elderly?

Due to its methodology, this study did not intend to generalize its results, and the authors are well aware of the multiple ways these residential structures are organized. It rather intended to express and interpret contexts and experiences in a residential care facility by attentively and empathically listening to its protagonists, the elderly people.

This study sought to question the dominant and exogenous conceptions that negatively emphasize the experience of “moving to a nursing home” as an absolutely terminal and fatal event in the life (and identity) of older people. We tested the idea that the experience of older people when moving to a collective residence may contribute to changes in the peripheral system of social representations of the object, reducing the negative burden from its central core as a hegemonic representation. This study analyzed how the transformation of representations happens as a result of experiential and contextual factors, or social practices. Practices can change representations, especially when practices contradict and defy representations (Abric, 1994ABRIC, J.-C. Pratiques sociales, représentations sociales. In: ABRIC, J.-C. (Ed.). Pratiques sociales et représentations. Paris: Presses Universitaires de France, 1994. p. 59-82.). This ability of practices must observe some predefined criteria, such as systematicity, positive (material and symbolic) value, and the fact that they are practices or implications restricted to actors in (de)limited contexts (Rouquette; Rateau, 1998ROUQUETTE, M.-L.; RATEAU, P. Introduction à l’étude des représentations sociales. Grenoble: Presses Universitaires de Grenoble, 1998.). These assumptions were extraordinarily heuristic, allowing the authors of this study to interpret and translate the statements of the elderly people living in a residential facility.

Three dimensions of effective practice of living in a residential facility for the elderly were found in the interviews, allowing the development of a typology of practices driving changes in the negative representation of the residential facility, organized as: (1) material and physical comfort; (2) escape from loneliness; and (3) maintenance of family connection.

The fact that moving to a residential facility for the elderly implies adaptation to a new environmental scenario is not ignored in this study. The changes can be severe and unpredictable, leading to a devastating experience of adaptation (Daniel, 2006DANIEL, F. O último lugar no mundo: considerações e reconsiderações sobre espaço e velhice. Interacções, Lisboa, n. 11, p. 85-112, 2006.). But a nonlinear reading of the experience reveals that it has more complex ontological and physical meanings and adaptations. Understanding pre- and post-moving scenarios allows the identification of improvements and qualitative changes in terms of physical and material conditions. A good integration should, therefore, prepare the moment of admission and adaptation, identifying idiorhythms of the elderly, particularly those arising from mobility or hearing problems, and their habits and routines of isolated and individual experience. Learning how to live together is surely one of the biggest challenges.

A qualified institutional accommodation process is essential to mitigate the impact associated with integration. In their integration process, the elderly people should feel welcome and accompanied. An involvement of residential facility professionals, family members and other residents is relevant in order to improve the reception and integration process. Another contribution stemming from this study also includes a perception of the experience of moving to a residential facility for the elderly which, despite representing a loss, can be prepared and built more easily if it integrates the elderly person, their family and the institution, although this seldom occurs. If an inevitable rupture exists, other aspects may be minimized to reduce the negativity involved in the elderly admission. In a study conducted by Faria and Carmo (2015FARIA, C. G.; CARMO, M. P. Transição e (in)adaptação ao lar de idosos: um estudo qualitativo. Psicologia: Teoria e Pesquisa, Brasília, DF, v. 31, n. 4, p. 435-442, 2015.) about this transition process, the authors highlight the importance of involving the elderly in the decision-making processes and of environmental features such as the internal functioning of the institution, privacy levels and the possibility of having a room for themselves and their personal objects - elements that relieve the potential disruptive effect of change, improving the adaptation and construction of new roles and relationships.

Integration of older people into a collective residential facility, when assertive, can be perceived as positive, improving their self-esteem. Developing new personal and interpersonal relationships and sharing common concerns and anxieties with more people can encourage older people to make friends and even initiate love/intimate relationships. Therefore, residential facilities for the elderly can be seen as a “fund of sociability” (Weiss, 1969WEISS, R. S. The fund of sociability: relationships with other people are essential and their loss can be traumatic. Trans-action, Philadelphia, v. 6, n. 9, p. 36-43, 1969.) in which relationships with “functional specificities” can be found to make up for potential losses.

Goffman (2002GOFFMAN, E. A representação do Eu na vida cotidiana. 10. ed. Petrópolis: Vozes, 2002., p. 222) argues that individuals, in everyday life representations, often deeply mobilize “their self in their identification with a particular role.” The people interviewed in this study, besides having a role, were also given a new stage, a stage apparently better in some aspects, with more comfort and security than the one they had before. Continuing with the theatrical metaphor, it might be argued that specific scenarios have been created for the different stages of the life cycle, but in the case of old age the roles played out are usually associated with negativities. Some authors, such as Souza (2003SOUZA, J. L. C. Asilo para idosos: o lugar da face rejeitada. Beira do Rio, Belém, ano 4, n. 1, p. 77-86, 2003.), argue that elderly people live their lives in very specific environments, segregated and divorced from people of other ages, acting out something like an aseptic exit to the backstage of social life.

A conflict can thus be identified between a societal model that remains structured on a “living” compartmentalized between different institutions, and the need of users/clients (of all ages) for qualified institutions to meet their needs. The residential facility for the elderly is one of these institutions. Based on this study, it seems that institutionalization, despite being related to a stage of life (old age) socially represented as an “island” and a time of existential and social rupture, can be experienced in a positive manner. New relationships and the involvement in new activities may provide some meaning to the life of those who otherwise would be at home alone. New and diversified activities, developed in the institution and with community involvement, allow older people to recognize more positive aspects in themselves, overcoming obstacles and enjoying more the (good) moments of life. This explains the need to increasingly value the construction of an individual plan (ISS, 2007) that allows adjustments between activities and/or services provided and the user’s needs and/or expectations.

Considering the above, it seems crucial for these institutions to offer a wide variety of activities. Creating pleasant/enjoyable routines is essential so the elderly will not feel “empty” and lonely in the midst of an unknown crowd. In addition to these activities, the elderly facilities must provide conditions for the creation of increasingly personalized “spaces of refuge” (Guedes, 2008GUEDES, J. Desafios identitários associados ao internamento em lar. In: CONGRESSO PORTUGUÊS DE SOCIOLOGIA, 6., 2008, Lisboa. Anais… Lisboa: APS, 2008.) or “territories of the self,” as described by Goffman (1992GOFFMAN, E. Manicómios, prisões e conventos. São Paulo: Perspectiva, 1992.). The possibility for the elderly to bring their belongings to the institution, besides providing comfort, allows them to “speak” of their identity. However, Directive nº 67 of March 21, 2012 issued by the Ministry of Solidarity and Social Security of the Portuguese Republic, which defines the conditions of organization, operation and installation for residential facilities for the elderly, potentially reduces the quality of life, as it reduces the number of individual rooms, increases the number of double rooms and introduces triple rooms in the legislation for the first time. Considering the literature and data resulting from this study (particularly the conditions driving changes in the negative social representations of the institutions), this ministerial directive does not seem to understand what a residential facility should offer: a humanized and personalized context that takes into account the specific needs of each resident, seen as the center focus of all organizational endeavors, favoring interaction with the family and community in order to optimize levels of activity and social participation. Then, it seems necessary for residential facilities, as suggested in the Manual de processos-chave: estrutura residencial para idosos (Handbook of key processes: Residential facility for the elderly) issued by the Social Security Institute (ISS, 2007, p. 2), to assume “a holistic and integrated approach in their conception, organization and service provision.”

This study intended to provide a contribution to the field of Gerontology, more specifically to the knowledge about the institutionalization experience and the aspects/dimensions of institutional life that can promote changes in the social representations associated with it, thus improving the quality of life of residents, that is: (1) material and physical comfort; (2) escape from loneliness; and (3) maintenance of family connection. However, these experiences are heterogeneous and influenced by social and class factors not addressed in this study, as it focused a very specific population. Then, further studies should be conducted with different populations to (dis)confirm the possibility of social representation changes proposed in this paper and/or compare underlying practices that promote these (positive) changes.

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Publication Dates

  • Publication in this collection
    09 Dec 2019
  • Date of issue
    Oct-Dec 2019

History

  • Received
    05 June 2019
  • Accepted
    16 June 2019
Faculdade de Saúde Pública, Universidade de São Paulo. Associação Paulista de Saúde Pública. SP - Brazil
E-mail: saudesoc@usp.br