O envelhecimento populacional é um processo universal, que não afeta apenas o indivíduo, mas também a família e a sociedade. No Brasil, o número de idosos está crescendo, o que torna necessário discutir sobre o exercício do cuidado destinado ao sujeito idoso, sobretudo o hospitalizado, bem como as perspectivas que este possui a respeito de si mesmo, dos familiares e dos profissionais cuidadores. O objetivo geral desta pesquisa qualitativa consistiu, assim, em conhecer e compreender a percepção do sujeito idoso hospitalizado a respeito de si mesmo e dos cuidadores familiares e profissionais. Foram sujeitos da pesquisa 19 idosos hospitalizados, com 60 anos ou mais, capazes de responder às questões aplicadas oralmente, a partir de um roteiro prévio, após várias observações, no período de 2007 e 2008, numa instituição hospitalar privada do RS. Tais respostas foram analisadas com base nas seguintes noções: conceitos e preconceitos relativos ao sujeito idoso; o autocuidado e o cuidado prestado por familiares e profissionais; perda de autonomia e institucionalização: a relação do idoso com o profissional cuidador; profissionais cuidadores da área da saúde; o profissional cuidador e a profissional cuidadora: a desigualdade entre os gêneros; qualidade de vida e saúde dos profissionais "cuida(dores)"; o surgimento dos hospitais; a ética, o SUS e as políticas públicas de saúde do idoso. Por meio da análise dos conteúdos, chegou-se a quatro categorias, definidas pelas respostas e não pelas questões: 1) "o idoso fala sobre si e sua doença"; 2) "a percepção do idoso com relação ao cuidador: os âmbitos familiar e profissional"; 3) "percepção do idoso em relação à instituição hospitalar"; 4) "percepção do idoso com relação aos seus direitos e deveres". A partir das respostas analisadas, concluiu-se que muitos sujeitos idosos não tinham clareza sobre a "sua" patologia; verificou-se a esperança em relação à vida e à cura de sua doença geralmente associada à religiosidade e à fé; esteve presente, ainda, a preocupação de se constituir um paciente permanente, com dependência irreversível dos medicamentos ou dos "cuida(dores)", perdendo, assim, a sua autonomia como sujeito. Em relação à instituição, embora tenha se constatado um atendimento ético e parcimonioso, nem sempre isso foi evidenciado pelos sujeitos idosos. O idoso com patologias graves referiu sentir-se mais seguro no hospital por ter ali o apoio técnico indispensável, preferindo, nessa ocasião, o cuidador profissional. Apesar da intenção explícita nas políticas públicas em considerar o idoso como sujeito em uma nova fase de vida, com necessidades e cuidados específicos, verificou-se que os direitos dos idosos ainda são desconhecidos pela sociedade e por eles próprios. A geriatria, a gerontologia e os novos conceitos delas decorrentes não alcançaram, ainda, todos os profissionais cuidadores de idosos, e menos ainda os seus familiares. Daí a urgência de um processo educativo e educador em torno do novo paradigma que busca, entre outras coisas, "pagar uma dívida" para com os idosos e resgatar o sujeito que a modernidade relegou a um lugar periférico e de invisibilidade. / The population ageing is a universal process that does not affect only the individual, but also the family and the community. In Brazil, the number of senior citizens is increasing and because of that it is necessary to discuss about the care of the elderly, especially the hospitalized one, as well as to reflect about their perspectives concerning themselves, the family and the professional caregivers. The goal of this qualitative research was to identify and to comprehend the perception of the hospitalized senior citizen concerning themselves, their family and the professional caregiver. The research subjects were 19 hospitalized senior citizens - 60 years old or more - who were able to answer the oral interviews, which were performed, based on a previous script and after several observations, in the period of 2007 and 2008, in a private hospital in the state of Rio Grande do Sul. The criteria used to subdivide the analysis in four categories were defined by the answers and not by the questions. Here they are: Talking about the senior citizens: some concepts and prejudices; The auto-care and the care rendered by family and professionals; Loss of autonomy and institutionalization: the relationship between the elder and the caregiver; Professional caregiver in the health area; From the female caregiver to the male one: the inequality between the genders; Life quality and the caregiver’s health; The hospitals beginning; Ethics and public health policies for the elderly. By the analysis of the contents, four categories were identified: first - "the elder speaks about himself and his disease"; second - "the perception of the elder regarding the caregiver: the familiar and professional scope"; third - "the perception of the elder regarding the hospital institution"; fourth - "the perception of the elder regarding their rights and duties." Based on the analysis realized, it was possible to conclude that many senior citizens did not have clearness about their pathology; the hope regarding life and the cure of the disease was almost associated to the religiosity and faith; the preoccupation of being a permanent patient, with irreversible dependence of medicines or caregivers, losing, thus, their autonomy. Considering the institution, although it was verified an ethical and parsimonious assistance, it was not always evidenced by the senior citizens. The ones with serious pathologies affirm to feel safer in hospital because of its indispensable technical support, desiring, so, the professional caregiver. Besides the explicit intention in the public policies of considering the senior citizen someone in a new phase of life, with specific needs and cares, it was not always verified, making it possible to believe that the rights of the elderly are still unknown by society and also themselves. The geriatrics and gerontology specialties and their new concepts have not reached, yet, all the senior caregivers or families. From that situation, there is the urgency of an educational process around the new paradigm that aims, among other things, to "pay a debt" to the senior citizen, rescuing the individual that modernity has relegated to a peripheral and invisible place.

O envelhecimento populacional é um processo universal, que não afeta apenas o indivíduo, mas também a família e a sociedade. No Brasil, o número de idosos está crescendo, o que torna necessário discutir sobre o exercício do cuidado destinado ao sujeito idoso, sobretudo o hospitalizado, bem como as perspectivas que este possui a respeito de si mesmo, dos familiares e dos profissionais cuidadores. O objetivo geral desta pesquisa qualitativa consistiu, assim, em conhecer e compreender a percepção do sujeito idoso hospitalizado a respeito de si mesmo e dos cuidadores familiares e profissionais. Foram sujeitos da pesquisa 19 idosos hospitalizados, com 60 anos ou mais, capazes de responder às questões aplicadas oralmente, a partir de um roteiro prévio, após várias observações, no período de 2007 e 2008, numa instituição hospitalar privada do RS. Tais respostas foram analisadas com base nas seguintes noções: conceitos e preconceitos relativos ao sujeito idoso; o autocuidado e o cuidado prestado por familiares e profissionais; perda de autonomia e institucionalização: a relação do idoso com o profissional cuidador; profissionais cuidadores da área da saúde; o profissional cuidador e a profissional cuidadora: a desigualdade entre os gêneros; qualidade de vida e saúde dos profissionais "cuida(dores)"; o surgimento dos hospitais; a ética, o SUS e as políticas públicas de saúde do idoso. Por meio da análise dos conteúdos, chegou-se a quatro categorias, definidas pelas respostas e não pelas questões: 1) "o idoso fala sobre si e sua doença"; 2) "a percepção do idoso com relação ao cuidador: os âmbitos familiar e profissional"; 3) "percepção do idoso em relação à instituição hospitalar"; 4) "percepção do idoso com relação aos seus direitos e deveres". A partir das respostas analisadas, concluiu-se que muitos sujeitos idosos não tinham clareza sobre a "sua" patologia; verificou-se a esperança em relação à vida e à cura de sua doença geralmente associada à religiosidade e à fé; esteve presente, ainda, a preocupação de se constituir um paciente permanente, com dependência irreversível dos medicamentos ou dos "cuida(dores)", perdendo, assim, a sua autonomia como sujeito. Em relação à instituição, embora tenha se constatado um atendimento ético e parcimonioso, nem sempre isso foi evidenciado pelos sujeitos idosos. O idoso com patologias graves referiu sentir-se mais seguro no hospital por ter ali o apoio técnico indispensável, preferindo, nessa ocasião, o cuidador profissional. Apesar da intenção explícita nas políticas públicas em considerar o idoso como sujeito em uma nova fase de vida, com necessidades e cuidados específicos, verificou-se que os direitos dos idosos ainda são desconhecidos pela sociedade e por eles próprios. A geriatria, a gerontologia e os novos conceitos delas decorrentes não alcançaram, ainda, todos os profissionais cuidadores de idosos, e menos ainda os seus familiares. Daí a urgência de um processo educativo e educador em torno do novo paradigma que busca, entre outras coisas, "pagar uma dívida" para com os idosos e resgatar o sujeito que a modernidade relegou a um lugar periférico e de invisibilidade. / The population ageing is a universal process that does not affect only the individual, but also the family and the community. In Brazil, the number of senior citizens is increasing and because of that it is necessary to discuss about the care of the elderly, especially the hospitalized one, as well as to reflect about their perspectives concerning themselves, the family and the professional caregivers. The goal of this qualitative research was to identify and to comprehend the perception of the hospitalized senior citizen concerning themselves, their family and the professional caregiver. The research subjects were 19 hospitalized senior citizens - 60 years old or more - who were able to answer the oral interviews, which were performed, based on a previous script and after several observations, in the period of 2007 and 2008, in a private hospital in the state of Rio Grande do Sul. The criteria used to subdivide the analysis in four categories were defined by the answers and not by the questions. Here they are: Talking about the senior citizens: some concepts and prejudices; The auto-care and the care rendered by family and professionals; Loss of autonomy and institutionalization: the relationship between the elder and the caregiver; Professional caregiver in the health area; From the female caregiver to the male one: the inequality between the genders; Life quality and the caregiver’s health; The hospitals beginning; Ethics and public health policies for the elderly. By the analysis of the contents, four categories were identified: first - "the elder speaks about himself and his disease"; second - "the perception of the elder regarding the caregiver: the familiar and professional scope"; third - "the perception of the elder regarding the hospital institution"; fourth - "the perception of the elder regarding their rights and duties." Based on the analysis realized, it was possible to conclude that many senior citizens did not have clearness about their pathology; the hope regarding life and the cure of the disease was almost associated to the religiosity and faith; the preoccupation of being a permanent patient, with irreversible dependence of medicines or caregivers, losing, thus, their autonomy. Considering the institution, although it was verified an ethical and parsimonious assistance, it was not always evidenced by the senior citizens. The ones with serious pathologies affirm to feel safer in hospital because of its indispensable technical support, desiring, so, the professional caregiver. Besides the explicit intention in the public policies of considering the senior citizen someone in a new phase of life, with specific needs and cares, it was not always verified, making it possible to believe that the rights of the elderly are still unknown by society and also themselves. The geriatrics and gerontology specialties and their new concepts have not reached, yet, all the senior caregivers or families. From that situation, there is the urgency of an educational process around the new paradigm that aims, among other things, to "pay a debt" to the senior citizen, rescuing the individual that modernity has relegated to a peripheral and invisible place.

O envelhecimento populacional é um processo universal, que não afeta apenas o indivíduo, mas também a família e a sociedade. No Brasil, o número de idosos está crescendo, o que torna necessário discutir sobre o exercício do cuidado destinado ao sujeito idoso, sobretudo o hospitalizado, bem como as perspectivas que este possui a respeito de si mesmo, dos familiares e dos profissionais cuidadores. O objetivo geral desta pesquisa qualitativa consistiu, assim, em conhecer e compreender a percepção do sujeito idoso hospitalizado a respeito de si mesmo e dos cuidadores familiares e profissionais. Foram sujeitos da pesquisa 19 idosos hospitalizados, com 60 anos ou mais, capazes de responder às questões aplicadas oralmente, a partir de um roteiro prévio, após várias observações, no período de 2007 e 2008, numa instituição hospitalar privada do RS. Tais respostas foram analisadas com base nas seguintes noções: conceitos e preconceitos relativos ao sujeito idoso; o autocuidado e o cuidado prestado por familiares e profissionais; perda de autonomia e institucionalização: a relação do idoso com o profissional cuidador; profissionais cuidadores da área da saúde; o profissional cuidador e a profissional cuidadora: a desigualdade entre os gêneros; qualidade de vida e saúde dos profissionais "cuida(dores)"; o surgimento dos hospitais; a ética, o SUS e as políticas públicas de saúde do idoso. Por meio da análise dos conteúdos, chegou-se a quatro categorias, definidas pelas respostas e não pelas questões: 1) "o idoso fala sobre si e sua doença"; 2) "a percepção do idoso com relação ao cuidador: os âmbitos familiar e profissional"; 3) "percepção do idoso em relação à instituição hospitalar"; 4) "percepção do idoso com relação aos seus direitos e deveres". A partir das respostas analisadas, concluiu-se que muitos sujeitos idosos não tinham clareza sobre a "sua" patologia; verificou-se a esperança em relação à vida e à cura de sua doença geralmente associada à religiosidade e à fé; esteve presente, ainda, a preocupação de se constituir um paciente permanente, com dependência irreversível dos medicamentos ou dos "cuida(dores)", perdendo, assim, a sua autonomia como sujeito. Em relação à instituição, embora tenha se constatado um atendimento ético e parcimonioso, nem sempre isso foi evidenciado pelos sujeitos idosos. O idoso com patologias graves referiu sentir-se mais seguro no hospital por ter ali o apoio técnico indispensável, preferindo, nessa ocasião, o cuidador profissional. Apesar da intenção explícita nas políticas públicas em considerar o idoso como sujeito em uma nova fase de vida, com necessidades e cuidados específicos, verificou-se que os direitos dos idosos ainda são desconhecidos pela sociedade e por eles próprios. A geriatria, a gerontologia e os novos conceitos delas decorrentes não alcançaram, ainda, todos os profissionais cuidadores de idosos, e menos ainda os seus familiares. Daí a urgência de um processo educativo e educador em torno do novo paradigma que busca, entre outras coisas, "pagar uma dívida" para com os idosos e resgatar o sujeito que a modernidade relegou a um lugar periférico e de invisibilidade. / The population ageing is a universal process that does not affect only the individual, but also the family and the community. In Brazil, the number of senior citizens is increasing and because of that it is necessary to discuss about the care of the elderly, especially the hospitalized one, as well as to reflect about their perspectives concerning themselves, the family and the professional caregivers. The goal of this qualitative research was to identify and to comprehend the perception of the hospitalized senior citizen concerning themselves, their family and the professional caregiver. The research subjects were 19 hospitalized senior citizens - 60 years old or more - who were able to answer the oral interviews, which were performed, based on a previous script and after several observations, in the period of 2007 and 2008, in a private hospital in the state of Rio Grande do Sul. The criteria used to subdivide the analysis in four categories were defined by the answers and not by the questions. Here they are: Talking about the senior citizens: some concepts and prejudices; The auto-care and the care rendered by family and professionals; Loss of autonomy and institutionalization: the relationship between the elder and the caregiver; Professional caregiver in the health area; From the female caregiver to the male one: the inequality between the genders; Life quality and the caregiver’s health; The hospitals beginning; Ethics and public health policies for the elderly. By the analysis of the contents, four categories were identified: first - "the elder speaks about himself and his disease"; second - "the perception of the elder regarding the caregiver: the familiar and professional scope"; third - "the perception of the elder regarding the hospital institution"; fourth - "the perception of the elder regarding their rights and duties." Based on the analysis realized, it was possible to conclude that many senior citizens did not have clearness about their pathology; the hope regarding life and the cure of the disease was almost associated to the religiosity and faith; the preoccupation of being a permanent patient, with irreversible dependence of medicines or caregivers, losing, thus, their autonomy. Considering the institution, although it was verified an ethical and parsimonious assistance, it was not always evidenced by the senior citizens. The ones with serious pathologies affirm to feel safer in hospital because of its indispensable technical support, desiring, so, the professional caregiver. Besides the explicit intention in the public policies of considering the senior citizen someone in a new phase of life, with specific needs and cares, it was not always verified, making it possible to believe that the rights of the elderly are still unknown by society and also themselves. The geriatrics and gerontology specialties and their new concepts have not reached, yet, all the senior caregivers or families. From that situation, there is the urgency of an educational process around the new paradigm that aims, among other things, to "pay a debt" to the senior citizen, rescuing the individual that modernity has relegated to a peripheral and invisible place.

Thesis consists of theoretical and practical part. In the theoretical part, there is a comprehensive view on the issue of donations in the context of social work. I focused on the characteristics of ethics and morals, on social work with elderly people, their family and the relationship between the worker and the client, as well as on the donations, including the act of receiving the donation, the motivation to donate and evaluation of the donations. In the last chapter I look into the Quality Standards of Social Services and describe here the procedure for receiving donations in several specific facilities. In practical part, my goal is to ascertain the attitude of family members in cases of elderly people wanting to donate to a professional caregiver or directly to a social service provider. In connection with the aim of this thesis, two questions have been defined. The first question is: What are the attitudes of family members who perceive donation as a negative phenomenon (bribe)? The second question is: What concept of life do the family members who perceive the donation to caregiver as neutral or positive adher to? Qualitative research strategy of an in-depth interview technique was chosen to meet the stated research goal. The method of simple deliberate (purposeful) selection was chosen to determine participants. Participants in the research were selected with regard to the family relationship to elderly people who use services of social workers or caregivers. Twelve communication partners attended the research. Data was processed in Atlas.ti 7 program. Data analysis revealed thirteen categories connected with the codes describing the statements of communication partners that expressed positive, neutral or negative attitudes to donations. The results of the research clarify the opinions of family members and thus extend the view on donating to providers of social service.

The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.

This thesis 'The Symphony of Care' consists of four studies focusing on care relationships between patients and professional caregivers. Care relationships are central to the health process and a fundamental element in caregiving. The term care relationship is widely used in caring science but lacks a clear definition, which can create misunderstanding and can constitute an obstacle when attempting to optimize care relationships. The aim of this thesis is to describe the phenomenon of care relationships in order to add to the body of knowledge in caring science.The main research questions are: • What is a care relationship within the caring science field? • How can a care relationship be optimized to improve its caring function, in order to promote health? The ontological foundation of this thesis is caring science. Phenomenology and Lifeworld theory are used as its epistemological bases. Reflective Lifeworld Research is used as a methodological approach. The four studies were conducted in different contexts and cultures- the first two empirical studies were performed in China and the remaining two, a metasynthesis and a secondary analysis, were carried out in a Swedish context. The results show that care relationships are temporary intentional relationships between a person who needs help and a helper. The purpose of this relationship is to support the patient in his/her dynamic health process, which is unique for each person in different times and contexts. Care relationships are fragile because the patient is vulnerable and the demand on the helper is great. It is an inter-human relationship between equals, which can at the same time be an asymmetric relationship due to the professionalism with the caregiver and the vulnerability with the patient. A care relationship is not independent, but is affected by internal factors such as the two individuals' lifeworlds and external factors such as health policies, organization, economics, health culture and environment. To optimize the effectiveness of caring, the relationship and its surrounding need to be in harmony. The view of care relationships should be broadened to include the external resources in order to optimize their caring potential.

Dans les centres d’hébergement et de soins de longue durée (CHSLD), jusqu’à 80 % des personnes admises vivent avec une démence (Conseil des aînés, 2007). Parmi ces personnes âgées, plusieurs crient. Ce comportement a fait l’objet de quelques études, mais ces études ne fournissent pas une compréhension des sens de ces cris qui pourrait orienter le choix d’interventions face à ces personnes et leur entourage. À l’aide de la perspective infirmière de Leininger (2001) et de la théorie de la communication et des interactions à l’intérieur de triades d’Adams et Gardiner (2005), le but de cette étude était de décrire les sens des cris de personnes âgées vivant avec une démence et les facteurs les influençant en tenant compte de la perspective des personnes âgées, de leurs aidants familiaux et de leurs soignants. Pour atteindre ce but, l’ethnographie critique a été choisie comme méthode. L’étude s’est découlée dans un CHSLD au sein duquel sept triades, composées de personnes âgées vivant avec une démence qui crient, d’aidants familiaux principaux et de soignants, ont été recrutées selon un échantillonnage théorique. Diverses méthodes de collecte des données ont été utilisées dont l’observation des personnes âgées et du milieu et des entrevues semi-dirigées auprès des aidants et soignants. L’analyse des données a été effectuée à l’aide des quatre approches proposées par Spradley (1979) soit l’analyse : des domaines, taxonomique, componentielle et thématique. Les résultats ont permis d’identifier des thèmes sur les sens des cris et sur les facteurs influençant ceux-ci. Les cris peuvent avoir pour sens la vulnérabilité, la souffrance et la perte de sens vécues par la personne âgée. Ce comportement peut aussi indiquer diverses finalités, par exemple l’expression d’insatisfactions ou d’émotions. Ces finalités peuvent être distinguées à partir de critères de modulation tels que la prévisibilité des cris ou un faciès émotif. Par ailleurs, divers aspects rendent les sens des cris singuliers. La stabilité et la flexibilité dans la façon d’organiser les soins ainsi que l’effet réciproque entre les personnes âgées qui crient et les autres personnes dans le CHSLD se sont dégagées comme étant des facteurs qui influencent les sens des cris. Il s’est aussi révélé que les cris de chaque personne âgée peuvent être considérés comme un langage unique que les aidants et les soignants sont en mesure d’apprendre et qui influence l’interprétation des sens des cris. L’accompagnement de la personne âgée, en tenant compte de ses volontés, ses besoins et de sa personnalité, les fluctuations dans les relations de pouvoir au sein des triades personnes âgées-aidants-soignants et les sentiments d’impuissance et de culpabilité des aidants et des soignants sont d’autres facteurs qui influencent les cris. Les connaissances découlant de cette étude augmentent la compréhension sur les sens des cris des personnes âgées vivant avec une démence. Elles ont des implications pour les divers champs d’activités des infirmières et qui pourront contribuer à offrir des soins culturellement cohérents et caring pour les personnes âgées vivant avec une démence et leur entourage. / Eighty percent of people admitted in nursing homes live with dementia (Conseil des aînés, 2007). Many of these elderly persons scream. Research on this population does not provide a useful basis for understanding this behavior which would enable to guide the choice of appropriate interventions to help the elderly and the people who hear them. The purpose of this research was to describe –with the help of elderly persons, their family and their professional caregivers– the meanings of screams in the elderly with dementia and their influencing factors, using Leininger’s (2001) nursing perspective and Adams and Gardiner’s (2005) theory of communication and interaction within dementia care triads. Critical ethnography was selected as the research design. Seven triads –composed of elderly persons with dementia that scream, primary family caregivers, and formal caregivers– were recruited from a nursing home according to a theoretical sampling procedure. Various data collection methods were used, particularly, the observation of elderly persons and their environment as well as semi-structured interviews with their family and formal caregivers. Spradley’s (1979) four types of ethnographic analysis: domains, taxonomic, componential and themes analysis were used. The results lead to emergent themes on the meanings of screams and on their influencing factors. The meanings of screams can be related to the vulnerability, suffering, and loss of meaning experienced by the elderly. This behavior can also represent various final outcomes, for example, the expression of dissatisfaction or of emotions. These outcomes can be differentiated by modulation criteria such as predictability of screams or emotional facial expressions. Various aspects of the meanings of screams make them singular. Some factors that influence the meanings of screams are the stability and flexibility of nursing care and the effect that the elderly who scream and the persons in the nursing home surrounding them have on each other. The screams of each person also prove to be a unique language that can be learned by family and formal caregivers which can in turn change the interpretation of the screams. Other influencing factors are the respect of the wishes, needs, and personality of the elderly person, fluctuations in power relations within the elderly-family-caregivers triads and feelings of powerlessness and guilt in family and formal caregivers. Knowledge generated by this study increases our understanding on the meanings of screams in elderly persons with dementia. It has implications for research, education, clinical practice and management that could contribute to caring and culturally congruent care for elderly persons with dementia and the people around them.

Dans les centres d’hébergement et de soins de longue durée (CHSLD), jusqu’à 80 % des personnes admises vivent avec une démence (Conseil des aînés, 2007). Parmi ces personnes âgées, plusieurs crient. Ce comportement a fait l’objet de quelques études, mais ces études ne fournissent pas une compréhension des sens de ces cris qui pourrait orienter le choix d’interventions face à ces personnes et leur entourage. À l’aide de la perspective infirmière de Leininger (2001) et de la théorie de la communication et des interactions à l’intérieur de triades d’Adams et Gardiner (2005), le but de cette étude était de décrire les sens des cris de personnes âgées vivant avec une démence et les facteurs les influençant en tenant compte de la perspective des personnes âgées, de leurs aidants familiaux et de leurs soignants. Pour atteindre ce but, l’ethnographie critique a été choisie comme méthode. L’étude s’est découlée dans un CHSLD au sein duquel sept triades, composées de personnes âgées vivant avec une démence qui crient, d’aidants familiaux principaux et de soignants, ont été recrutées selon un échantillonnage théorique. Diverses méthodes de collecte des données ont été utilisées dont l’observation des personnes âgées et du milieu et des entrevues semi-dirigées auprès des aidants et soignants. L’analyse des données a été effectuée à l’aide des quatre approches proposées par Spradley (1979) soit l’analyse : des domaines, taxonomique, componentielle et thématique. Les résultats ont permis d’identifier des thèmes sur les sens des cris et sur les facteurs influençant ceux-ci. Les cris peuvent avoir pour sens la vulnérabilité, la souffrance et la perte de sens vécues par la personne âgée. Ce comportement peut aussi indiquer diverses finalités, par exemple l’expression d’insatisfactions ou d’émotions. Ces finalités peuvent être distinguées à partir de critères de modulation tels que la prévisibilité des cris ou un faciès émotif. Par ailleurs, divers aspects rendent les sens des cris singuliers. La stabilité et la flexibilité dans la façon d’organiser les soins ainsi que l’effet réciproque entre les personnes âgées qui crient et les autres personnes dans le CHSLD se sont dégagées comme étant des facteurs qui influencent les sens des cris. Il s’est aussi révélé que les cris de chaque personne âgée peuvent être considérés comme un langage unique que les aidants et les soignants sont en mesure d’apprendre et qui influence l’interprétation des sens des cris. L’accompagnement de la personne âgée, en tenant compte de ses volontés, ses besoins et de sa personnalité, les fluctuations dans les relations de pouvoir au sein des triades personnes âgées-aidants-soignants et les sentiments d’impuissance et de culpabilité des aidants et des soignants sont d’autres facteurs qui influencent les cris. Les connaissances découlant de cette étude augmentent la compréhension sur les sens des cris des personnes âgées vivant avec une démence. Elles ont des implications pour les divers champs d’activités des infirmières et qui pourront contribuer à offrir des soins culturellement cohérents et caring pour les personnes âgées vivant avec une démence et leur entourage. / Eighty percent of people admitted in nursing homes live with dementia (Conseil des aînés, 2007). Many of these elderly persons scream. Research on this population does not provide a useful basis for understanding this behavior which would enable to guide the choice of appropriate interventions to help the elderly and the people who hear them. The purpose of this research was to describe –with the help of elderly persons, their family and their professional caregivers– the meanings of screams in the elderly with dementia and their influencing factors, using Leininger’s (2001) nursing perspective and Adams and Gardiner’s (2005) theory of communication and interaction within dementia care triads. Critical ethnography was selected as the research design. Seven triads –composed of elderly persons with dementia that scream, primary family caregivers, and formal caregivers– were recruited from a nursing home according to a theoretical sampling procedure. Various data collection methods were used, particularly, the observation of elderly persons and their environment as well as semi-structured interviews with their family and formal caregivers. Spradley’s (1979) four types of ethnographic analysis: domains, taxonomic, componential and themes analysis were used. The results lead to emergent themes on the meanings of screams and on their influencing factors. The meanings of screams can be related to the vulnerability, suffering, and loss of meaning experienced by the elderly. This behavior can also represent various final outcomes, for example, the expression of dissatisfaction or of emotions. These outcomes can be differentiated by modulation criteria such as predictability of screams or emotional facial expressions. Various aspects of the meanings of screams make them singular. Some factors that influence the meanings of screams are the stability and flexibility of nursing care and the effect that the elderly who scream and the persons in the nursing home surrounding them have on each other. The screams of each person also prove to be a unique language that can be learned by family and formal caregivers which can in turn change the interpretation of the screams. Other influencing factors are the respect of the wishes, needs, and personality of the elderly person, fluctuations in power relations within the elderly-family-caregivers triads and feelings of powerlessness and guilt in family and formal caregivers. Knowledge generated by this study increases our understanding on the meanings of screams in elderly persons with dementia. It has implications for research, education, clinical practice and management that could contribute to caring and culturally congruent care for elderly persons with dementia and the people around them.