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1.
Gerontologist ; 2024 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-38832567

RESUMO

BACKGROUND AND OBJECTIVES: Nowadays people increasingly try to take control over the end of their lives by anticipating end-of-life choices. Explication of these choices is encouraged using advance care planning (ACP). We aim to deepen our understanding of how choice-making processes are lived in real life, exploring the experience of community-dwelling older adults and their close ones over time. RESEARCH DESIGN AND METHODS: A multiperspective and longitudinal approach grounded in phenomenology was chosen. Ten triads consisting of an older adult (75+) and two close ones (n=30) were interviewed, twice individually and once as a group, over 20 months (=70 interviews). Data were thematically analyzed both longitudinally and from all three perspectives. RESULTS: The essential meaning of anticipating choice-making processes was described as a dynamic and relationally entangled decisional process, to navigate between paradoxical choices for an opaque future. Three fields of tension were created due to ambivalence in these choice-making processes: navigation between having and losing control, between taking away and burdening with responsibility, and between expressing and holding back oneself. DISCUSSION AND IMPLICATIONS: Anticipation of choices for hypothetical end-of-life scenarios turned out to be complex and ambivalent. Most older adults resisted ambivalence and ignored complexity in an attempt to stay in control over their end of life. The burdening impact of choices on close ones illuminated the relationality of choice-making processes. These aspects of end-of-life choice-making processes should be integrated into ACP in order to better understand and care for people and their close ones faced with these choices.

2.
Aging Ment Health ; 27(12): 2457-2465, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37036420

RESUMO

OBJECTIVES: To describe the lived experience of older people who see no future for oneself in the context of aging and the possible development of a wish to die. METHODS: Data were collected from 34 interviews with people of 55-92 years. A phenomenological hermeneutical analysis was performed using crafted stories as an analytical device. RESULTS: Four intertwined constituents together with the essence of the phenomenon provide a layered description of what it means to see no future for oneself. In all constituents: 1) not sharing everyday life, 2) looking for new commitments, 3) facing present losses and future fears and 4) imagining not waking up in the morning, the essence losing zest for life seeped through their daily experiences. CONCLUSIONS: As their horizon of future possibilities is shrinking, older people in our study experience a loss of zest for life and start to questioning the value of their present lives. And although a certain languishing mood can be discovered, the phenomenon 'seeing no future for oneself' does not entail a wish to die.


Assuntos
Envelhecimento , Medo , Humanos , Idoso
3.
BMC Geriatr ; 22(1): 885, 2022 11 21.
Artigo em Inglês | MEDLINE | ID: mdl-36411442

RESUMO

BACKGROUND: Some older adults with a persistent death wish without being severely ill report having had a death wish their whole lives (lifelong persistent death wish; L-PDW). Differentiating them from older adults without severe illness who developed a death wish later in life (persistent death wish, not lifelong; NL-PDW) can be relevant for the provision of adequate help and support. This study aims to gain insight into the characteristics, experiences, and needs of older adults with a L-PDW versus older adults with a NL-PDW and into the nature of their death wishes. METHODS: In the Netherlands, in April 2019, a cross-sectional survey study was conducted among a large representative sample of 32,477 citizens aged 55 years and older. Respondents with a L-PDW (N = 50) were compared with respondents with a NL-PDW (N = 217) using descriptive statistics, Kruskal-Wallis tests, and Fisher's exact tests. RESULTS: Respondents with a L-PDW were relatively younger and less often had (step)children. They less often looked back on a good and satisfying life with many good memories and more often reported trauma. Older adults with a NL-PDW more often reported loss and bereavement. Overall, the groups showed a lot of similarities. Both groups reported a death wish diverse in nature, numerous health problems, and a variety of needs for help and support. CONCLUSIONS: Some of the differences we found between the groups might be particularly relevant for the provision of adequate help and support to older adults with a L-PDW (i.e., their past and trauma) and to older adults with a NL-PDW (i.e., their loss and bereavement). The heterogeneity of both groups and the diverse nature of their death wish indicate that careful assessment of the death wish, its background, and underlying needs is required to provide personalized help and support to older adults with a death wish.


Assuntos
Estudos Transversais , Humanos , Idoso , Inquéritos e Questionários , Países Baixos/epidemiologia
4.
Soc Sci Med ; 311: 115361, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36108564

RESUMO

RATIONALE: There is a paucity of empirical studies exploring how death and dying in old age are actually represented and debated within the Dutch society. OBJECTIVE: This study examines the discourse used in Dutch newspapers on the good death and dignified dying. It analyses how different types of social actions and positions are construed, thereby describing how death and dying in old age are portrayed in newspaper media. METHODS: 173 newspaper articles between 2010 and 2020 were selected from five Dutch national newspapers. Data were thematically coded and scrutinised for discursive patterns in order to identify interpretative repertoires and their functions. RESULTS: Four interpretative repertoires of good death and dying in old age were identified, all drawing on the assisted dying debate: Choice, Risk, Care, and Complexity. Each repertoire constructs a particular image of death and dying, varying from it being a personal choice; a last resort; a joint journey; to a contingent quest. The different repertoires imply distinct identities and actions. The Choice-repertoire construes older people as active subjects who autonomously determine their own death. The Risk- and Care-repertoires both construe older people primarily as passive and acted upon: either threatened by illness, decline and death; or protected and cared for by others and society. The Complexity-repertoire construes older people's situation as an object of reflection. DISCUSSION AND CONCLUSION: The strong prevalence of the Choice-repertoire in Dutch newspapers construes good death and dignified dying in old age in a salient way, unrepresentatively highlighting assisted dying as the preferred imagined practice. It is hypothesised that reimaging the Care- and Complexity-repertoires in such a way that they construe older persons in a more active subject role could help depolarise the debate on death and dying in old age.

5.
J Aging Stud ; 61: 101004, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35654535

RESUMO

The lack of constructive cultural narratives of old age impedes older people from giving meaning to any difficult circumstances related to aging in which they might find themselves. In this study, we attempted to shed a different light on experiences of meaning in older age to contribute to sources for constructive counter narratives by gaining insight into (the experience of) meaning in old age of Dutch Franciscan friars. The research was a phenomenological in-depth interview study among twelve friars (mean age 80.6 years) following a reflective lifeworld design. The three main themes that emerged from the analysis were (i) 'brotherhood', illustrating a strong, axiomatic sense of connectedness, (ii) 'finitude', illustrating individual and relational confrontations with daily and existential finitude, and (iii) 'dynamic', illustrating opportunities for new possibilities, personal growth and being able to be receptive of the 'good' in daily life. Our findings showed that aging is a multidimensional process that is not exclusively characterized by decline and loss, but also offers substantial opportunities to experience (new) meaning. Occasionally, meaning seemed to arise as a result of (physical) decline. Our results illustrated that under circumstances of connectedness and togetherness, frailty and dependency do not necessarily form a threat to one's autonomy. Connectedness also showed itself to be a source for authenticity, which reinforced the Franciscans as autonomous moral agents.


Assuntos
Monges , Idoso , Idoso de 80 Anos ou mais , Envelhecimento , Etnicidade , Existencialismo , Humanos , Narração
6.
Health Policy ; 126(8): 824-830, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35710476

RESUMO

BACKGROUND: Some people request euthanasia or assisted suicide (EAS) even though they are not (severely) ill. In the Netherlands the presence of sufficient medical ground for the suffering is a strict prerequisite for EAS. The desirability of this 'medical ground'-boundary is currently questioned. Legislation has been proposed to facilitate EAS for older persons with "completed life" or "tiredness of life" in the absence of (severe) illness. OBJECTIVES: To describe the characteristics and motivations of persons whose requests for EAS in the absence of (severe) illness did not result in EAS and the decision-making process of medical professionals in these types of requests. METHODS: Analysis of 237 applicant records of the Dutch Euthanasia Expertise Center. We studied both the perspectives of applicants and medical professionals. FINDINGS: The majority of the applicants were women (73%) aged 75 years and older (79%). Applicants most often indicated physical suffering as element of suffering and reason for the request. Medical professionals indicated in 40% of the cases no or insufficient medical ground for the suffering. CONCLUSIONS: Physical suffering plays an important role in requests for EAS even for persons who are not (severely) ill. From the presence of physical suffering it does not necessarily follow that for medical professionals there is sufficient medical ground to comply with the 'medical ground'-boundary.


Assuntos
Eutanásia , Suicídio Assistido , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Feminino , Humanos , Masculino , Países Baixos , Dor
7.
Front Psychol ; 12: 734049, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34744905

RESUMO

In the Netherlands and in Belgium, a political debate emerged regarding the possibility of euthanasia and assisted suicide (EAS) for older adults who experience their lives as completed and no longer worth living, despite being relatively healthy. This mini-review aimed to (1) present an overview of the terms used to denote this phenomenon as well as their definitions and to (2) explore how the underlying experiences are interpreted by the study authors. A systematic search was performed in Web of Science, MEDLINE, PsycINFO, and CINAHL, yielding 35 articles meeting the selection criteria. We selected empirical, English-language articles published in peer-reviewed journals. Participants had to have a first-person experience of the phenomenon or be assessed for it, or have a third-person experience of the phenomenon. Results show that the terms tiredness of life (ToL) and weariness of life (WoL) were used most frequently, also in the broader literature on suicidal expressions across the life span. Many studies mentioned operational definitions or synonyms rather than theoretical definitions. Moreover, inside the EAS debate, the term ToL was more common, its definition incorporated death wishes, and it was regularly framed existentially. Outside of this debate, the phenomenon was generally considered as a part of suicidal ideation distinct from death wishes, and its experience was often associated with underlying psychopathology. We discuss the need to establish consensus definitions and conclude that only a multidimensional view may be suitable to capture the complex nature of the phenomenon.

8.
Ned Tijdschr Geneeskd ; 1652021 06 03.
Artigo em Holandês | MEDLINE | ID: mdl-34346578

RESUMO

OBJECTIVE: To provide insight into the prevalence of persistent death wishes without being severely ill among Dutch older persons aged 75 and above; to describe the characteristics and circumstances of this group; to improve knowledge on the nature of their death wishes. DESIGN: Cross-sectional study. METHOD: In 2019 we conducted a large survey among a representative sample of 32,477 Dutch citizens aged 55 and above from the TNS-NIPObase. The questionnaire was completed by 21,294 respondents in April 2019 (response rate 65.6%). This article comprises a subanalysis of the respondents aged 75 and above. RESULTS: Of all 3,141 respondents aged 75 and above, 56 were identified as having a persistent death wish and no severe illness (PDW-NSI). The weighted percentage representing the Dutch population indicates PDW-NSI among 2.07% of all older persons aged 75 and above in the Netherlands. Respondents with PDW-NSI had a lower level of education, were of lower social class and lived in highly urbanized areas more often. Important aspects enhancing the death wish were dependence on others, worrying, physical or mental deterioration, health problems and loneliness. The death wish was subject to change and the intensity varied over time. CONCLUSION: Of older persons aged 75 and above with PDW-NSI, a considerable part stays out of sight of healthcare professionals because they do not communicate about their death wish. This may challenge timely support. Carefully questioning the meaning and nature of the death wish is essential to understand the background and underlying needs of the persons concerned.


Assuntos
Estudos Transversais , Idoso , Idoso de 80 Anos ou mais , Escolaridade , Humanos , Países Baixos , Prevalência , Inquéritos e Questionários
9.
Soc Sci Med ; 284: 114180, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34266673

RESUMO

RATIONALE: There is a paucity of empirical studies exploring wishes to die (WTD) in older adults without a life-threatening disease or psychiatric disorder, especially on how these WTD evolve over time. OBJECTIVE: This study aims to deepen our understanding of living with a WTD by elucidating multifaceted trajectories of death wishes in older adults without a life-threatening disease or psychiatric disorder. METHODS: Interviews were conducted between 2013 and 2019 with Dutch men and women aged 70 and older who expressed a WTD (preferably at a self-chosen moment). Using a phenomenological, longitudinal analysis approach, 35 serial interviews were analyzed. RESULTS: This resulted in four thematic meanings following four trajectories, namely: 1) a realized WTD, facing the ultimate decision with both freedom and a sense of fate; 2) an intensifying WTD, reaching a deadlock; 3) a diminishing WTD, experiencing tentative space for new possibilities; and 4) a vanishing WTD, being surprised by an unexpected turn. In the cases examined, the individuals' WTD was characterized by ambivalence and subject to change over time. Fluctuating, often asynchronous patterns of physical, social, psychological, and existential distress were lived intertwined. The WTD should thus be understood as dynamic and unpredictable, often impacted by external circumstances. CONCLUSIONS: An important clinically relevant finding is that even persons with a pronounced WTD can experience openness to new possibilities, leading to a diminished or vanished WTD and/or desire to act on their WTD. Often such changes were related to (re-)establishment of connections with other people and/or society or with themselves. Since most research in this area is cross-sectional, the current longitudinal findings of this study are unique in providing insight into changes over time, thus contributing to the fields of death and suicide studies.


Assuntos
Transtornos Mentais , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Masculino
10.
Gerontologist ; 61(7): 1019-1029, 2021 09 13.
Artigo em Inglês | MEDLINE | ID: mdl-33320192

RESUMO

BACKGROUND AND OBJECTIVES: Meaning in life is an important aspect of positive psychological functioning for older adults. Limited work suggests the relevance of the experience of meaning for people with dementia, but research into this experience from their personal perspective is lacking. The current study provides an in-depth investigation of the lived experience of meaning in life for older adults with Alzheimer's disease. RESEARCH DESIGN AND METHODS: The study was conducted following the phenomenological reflective lifeworld approach. In-depth interviews were conducted with 16 older adults (+65) with Alzheimer's disease living either at home or in a nursing home in Belgium. Data analysis was an iterative process aimed at illuminating the constituents and essence of the phenomenon. RESULTS: The essence of the experience of meaning in life for participants was understood as "continuing to participate in the dance of life as oneself." This experience was further clarified in four closely intertwined constituents: (a) feeling connected and involved, (b) continuing everyday life as oneself, (c) calmly surrendering and letting go, and (d) desiring freedom, growth, and invigoration. DISCUSSION AND IMPLICATIONS: Our findings contribute to a deeper understanding of meaning in life as experienced by older adults with Alzheimer's disease themselves. They emphasize the relevance of the concept for psychological dementia research and offer original insight for the inclusion of meaning in life as an important aspect of holistic dementia care.


Assuntos
Doença de Alzheimer , Idoso , Bélgica , Humanos
11.
JAMA Intern Med ; 181(2): 245-250, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33284324

RESUMO

Importance: The Dutch Regional Euthanasia Review Committees (RTEs) reviewed and reported an increasing number of cases of euthanasia and physician-assisted suicide (EAS) requested by older people with multiple geriatric syndromes (MGS). Knowledge of the characteristics of cases of EAS for MGS is important to facilitate societal debate and to monitor EAS practice. Objective: To examine the accumulation of patient characteristics, geriatric syndromes, and other circumstances as reported in the case summaries of the RTEs that led to unbearable suffering associated with a request for EAS and to analyze the RTEs' assessments of these cases of EAS. Design, Setting, and Participants: A qualitative content analysis was conducted of all case summaries filed from January 1, 2013, to December 31, 2019, under the category MGS and published in a national open access database. These case summaries were selected by the RTEs from the total of 1605 reported cases of EAS in the category MGS. Results: The RTEs published 53 cases (41 [77%] female) under the category MGS. A total of 28 patients (53%) had always perceived themselves as independent, active, and socially involved. None of the patients suffered from life-threatening conditions. Multiple geriatric syndromes, such as visual impairment (34 cases [64%]), hearing loss (28 cases [53%]), pain (25 cases [47%]), and chronic tiredness (22 cases [42%]), were common. The request for EAS was often preceded by a sequence of events, especially recurrent falls (33 cases [62%]). Although physical suffering could be determined in all cases, the case descriptions found that suffering occurred on multiple dimensions, such as the loss of mobility (44 [83%]), fears (21 [40%]), dependence (23 [43%]), and social isolation (19 [36%]). Conclusions and Relevance: This qualitative study suggests that an accumulation of geriatric syndromes leading to a request for EAS is often intertwined with the social and existential dimension of suffering. This leads to a complex interplay of physical, psychological, and existential suffering that changes over time.


Assuntos
Eutanásia/estatística & dados numéricos , Múltiplas Afecções Crônicas/epidemiologia , Suicídio Assistido/estatística & dados numéricos , Acidentes por Quedas , Idoso de 80 Anos ou mais , Pessoas com Deficiência , Feminino , Humanos , Masculino , Limitação da Mobilidade , Países Baixos/epidemiologia , Isolamento Social
12.
BMC Geriatr ; 20(1): 342, 2020 09 17.
Artigo em Inglês | MEDLINE | ID: mdl-32943009

RESUMO

BACKGROUND: Some older persons develop a persistent death wish without being severely ill, often referred to as "completed life" or "tiredness of life". In the Netherlands and Belgium, the question whether these persons should have legal options for euthanasia or physician-assisted suicide (EAS) is intensely debated. Our main aim was to investigate the prevalence and characteristics of older adults with a persistent death wish without severe illness, as the lack of this knowledge is a crucial problem in de debate. METHODS: We conducted a survey among a representative sample of 32,477 Dutch citizens aged 55+, comprising questions about health, existential issues and the nature of the death wish. Descriptive statistics were used to describe the group with a persistent death wish and no severe illness (PDW-NSI) and several subgroups. RESULTS: A total of 21,294 respondents completed the questionnaire (response rate 65.6%). We identified 267 respondents (1.25%) as having a persistent death wish and no severe illness (PDW-NSI). PDW-NSI did not only occur among the oldest old. Although qualifying themselves as "not severely ill", those with PDW-NSI reported considerable health problems. A substantial minority of the PDW-NSI-group reported having had a death wish their whole lives. Within the group PDW-NSI 155 (0.73%) respondents had an active death wish, of which 36 (0.17% of the total response) reported a wish to actually end their lives. Thus, a death wish did not always equal a wish to actually end one's life. Moreover, the death wishes were often ambiguous. For example, almost half of the PDW-NSI-group (49.1%) indicated finding life worthwhile at this moment. CONCLUSIONS: The identified characteristics challenge the dominant "completed life" or "tiredness of life" image of healthy persons over the age of 75 who, overseeing their lives, reasonably decide they would prefer to die. The results also show that death wishes without severe illness are often ambiguous and do not necessarily signify a wish to end one's life. It is of great importance to acknowledge these nuances and variety in the debate and in clinical practice, to be able to adequately recognize the persons involved and tailor to their needs.


Assuntos
Morte , Depressão/psicologia , Eutanásia/estatística & dados numéricos , Ideação Suicida , Idoso , Idoso de 80 Anos ou mais , Bélgica/epidemiologia , Estudos Transversais , Depressão/complicações , Eutanásia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Prevalência , Senso de Coerência , Suicídio Assistido , Inquéritos e Questionários
13.
Ned Tijdschr Geneeskd ; 1642020 06 19.
Artigo em Holandês | MEDLINE | ID: mdl-32749804

RESUMO

Currently, in the Netherlands, there is wide debate about the legalization of assisted suicide of older people who consider their lives to be "completed" without being severely ill. Robust scientific knowledge is required for careful policy decisions. Since 2012, I have been doing research in this field. In this article, I map out the current state of play: which older people are we talking about? What are the circumstances and characteristics of older people who have a death wish while not having a severe illness? And: what is the nature of their death wish? The findings demonstrate that the term "completed life" is inappropriate within this framework. It seems better to just speak of a death wish, since this offers space to recognize the variety of considerations and circumstances underlying said death wishes.


Assuntos
Atitude Frente a Morte , Suicídio Assistido/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Países Baixos , Suicídio Assistido/legislação & jurisprudência
14.
PLoS One ; 14(4): e0214724, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30943277

RESUMO

INTRODUCTION: This Dutch study is a qualitative interview study. It aims to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences. METHODS: We used a combination of narrative accounts of people from dementia. We first collected 322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This data was supplemented with 37 interview accounts. Our data analysis was inspired by Van Manen's existential phenomenological approach. RESULTS: The findings show that living with dementia-from a first-person perspective-can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world. This experience is explicated in the following themes: 1a) scrutinizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scrutinized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrinking space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by means of euthanasia. DISCUSSION: Our study demonstrates how the people with dementia are affected by 'the eyes of others'. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people's self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries. Furthermore, our study supports the demand for a socio-relational approach by demonstrating that-from a first-person perspective-dementia can be seen a disorder that is related in particular to questions about selfhood, social relations and social roles. For the people involved, instead of what dementia is, the focus is on what Alzheimer's disease means and does and how it affects daily life.


Assuntos
Demência/psicologia , Apoio Social , Adaptação Psicológica , Eutanásia/psicologia , Humanos , Países Baixos
15.
Omega (Westport) ; 80(2): 245-265, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28933658

RESUMO

The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological-hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.


Assuntos
Idoso de 80 Anos ou mais/psicologia , Controle Interno-Externo , Solidão/psicologia , Ideação Suicida , Atitude Frente a Morte , Feminino , Humanos , Masculino , Metáfora , Países Baixos , Fatores de Risco
16.
J Eur Soc Policy ; 28(4): 419-429, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-30443106

RESUMO

In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on 'completed life in old age' should primarily focus not on the question of whether or not to legitimize a self-directed death but on how to build an inclusive society where people may feel less unneeded, useless and marginalized.

17.
PLoS One ; 13(6): e0198034, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29897922

RESUMO

INTRODUCTION: Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite. METHODS: This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach. RESULTS: The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others. DISCUSSION AND CONCLUSION: Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.


Assuntos
Cuidadores/psicologia , Demência , Família/psicologia , Incerteza , Adulto , Idoso , Idoso de 80 Anos ou mais , Emoções , Fadiga/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Isolamento Social , Apoio Social , Adulto Jovem
18.
Qual Health Res ; 27(11): 1738-1747, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-28799478

RESUMO

Being able to describe how research findings become evidence is crucial in providing a justification for all kinds of research findings. However, qualitative researchers in health care, including those who conduct phenomenological research, are usually fairly modest when it comes qualifying their research findings as such. We advocate a view of evidence for phenomenological research, an approach that is rooted in philosophy of science, including perspectives of ontology, epistemology, and methodology. We suggest that phenomenology can become an exemplar for how qualitative research can make convincing arguments and thus can be better appreciated. In this article, we present a philosophical foundation for phenomenological evidence by exploring the notions of objectivity, validity, and generalizability in terms of openness, meaning, and essence.


Assuntos
Prática Clínica Baseada em Evidências , Pesquisa sobre Serviços de Saúde , Pesquisa Qualitativa , Pesquisa Translacional Biomédica , Humanos , Filosofia
19.
Tijdschr Gerontol Geriatr ; 48(4): 169-176, 2017 Sep.
Artigo em Holandês | MEDLINE | ID: mdl-28656536

RESUMO

Giving adequate diagnostic information is considered to be fundamental in dementia care. An important question is how the diagnostic disclosure in dementia actually takes place. The aim of this explorative ethnographic study was therefore to provide insight into the disclosure practice of medical specialists. For this study, 22 interviews performed by seven medical specialists were analyzed.The results of this study show that the observed doctors are direct and explicit in disclosing the diagnosis. Actual (medical) information about the diagnosis and the performed investigations is provided. The main areas for improvement are involving the patient in the conversation, align your language to the lifeworld of the patient and his/her significant other(s), avoiding the use of medical jargon, discussing the consequences of the diagnosis for daily life, and explicitly recognizing the emotional and existential challenges associated with the disclosure. In providing further information, doctors could discuss emotional and existential support more specifically.


Assuntos
Cuidadores/educação , Cuidadores/psicologia , Demência/diagnóstico , Revelação da Verdade , Administração de Caso , Humanos , Educação de Pacientes como Assunto , Relações Profissional-Família
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