Relationships and burden: An empirical‐ethical investigation of lived experience in home nursing arrangements

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients’ subjective feelings of being a burden and on caregivers’ willingness to carry the burden in home care. This article uses empirical material from semi‐structured interviews conducted with older people affected by multiple chronic conditions and in need of long‐term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home‐care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical‐ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.     

Multimodal home care intervention for dependent older people “Live better at home”: Protocol of a randomized clinical trial

BackgroundThe intensity of the home care interventions for dependent older people offered in Spain may not be sufficient to help keep older people living at home, being the institutionalization in a nursing home (NH) an unavoidable consequence.ObjectiveTo evaluate the effect of intensification in home care interventions on users with grade II or III dependency, as well as training for their informal caregivers in order to delay or avoid their institutionalization in a NH.MethodsA randomized clinical trial with two parallel arms and blinded assessment will be conducted at the community level in two municipalities in Catalonia (Spain). The study will include those older people (aged 65 and over) living in the community, with degree II or III of dependency, users of the public home care unwilling to be institutionalized and with a main informal caregiver in charge, who will also participate in the study. The assessments will be performed monthly up to 15 months, when the intervention will be finished. The main outcome will be the time until the willingness for admission to a NH. Secondary variables will be composed of sociodemographic, health, psychosocial, resource use, and follow-up variables. A multivariate Cox regression model will be carried out to estimate the effectiveness of the intervention.DiscussionA multimodal home care intervention could improve the health and psychosocial status of dependent people and their informal caregivers and facilitate their permanence at home.Trial registrationNCT05567965     

Old people's homes: the relatives' view.

On 1 April new arrangements came into force for arranging and funding residential care for elderly people in Britain. From now on those who seem to need full time care will be assessed first by care managers employed by local authority social services departments. This may lead to admission to an old people''s home or a nursing home. Local authorities have been told to consult both users and carers about such decisions. But what about relatives who have not actually been giving care directly? The Relatives Association was set up last year as a voluntary organisation for the relatives and friends of older people living in residential homes. Below, its vice president, Mavis Nicholson, a journalist and broadcaster whose mother died of Alzheimer''s disease in a residential home last year, gives her personal view of being such a relative. And Dorothy White, the association''s founder, explains what the future may hold for elderly residents and their relatives.     

Risk, Suffering and Competing Narratives in the Psychiatric Assessment of an Iraqi Refugee

This paper highlights the problem of "place" for an Iraqi refugee who, for years, had been tortured and imprisoned in his home country. Specifically, the paper presents a case study of a clinical encounter with this refugee, who had come to the attention of an Australian Crisis Assessment and Treatment Team. Drawing from narrative theory, the paper describes the chaotic nature of the encounter to show how the diverse motives, claims and actions of those present expose the struggle involved in the emplotment of an emerging narrative. The case study is constructed and analysed to illustrate the interpretive machinery of "clinical reasoning" and, in particular, the tension and play between "paradigmatic thinking" and "narrative thinking." More generally, this analysis follows the work of social scientists who seek to expand methodologies for writing about human suffering.     

Supporting persons with developmental disability--a new model

The way we think about and care for people with developmental disability has changed. Twenty-five years ago, society believed that caregivers always knew what was best for their individual and that he or she must be shielded, even shut away from, the harms that could occur in society. Now, people with disability participate in all aspects of community life. They are educated in local schools, live at home or in their own home, and compete with others in the job market. Caregiving for people with developmental disability is no longer modeled on medicine or stigmatizing labels. Instead, caregivers have become support persons who focus on identifying community resources and making the environment friendlier and safer for persons with disability.     

Formación de cuidadores en un programa de estimulación cognitiva: efectos diferenciales según el tipo de cuidador

Background and objectivesThe ageing population and the increasing dependency associated with it, makes the caregiver a highly relevant figure nowadays. The present study analyzes the socio-demographic differences between family and professional caregivers and their satisfaction and implication in a training program for caregivers.MethodsThe sample consisted of 59 caregivers of older people (37 were family caregivers and 22 professional caregivers) which received and implemented a caregivers training program in their daily care functions. These caregivers were trained in communication skills and cognitive stimulation strategies so they could use them in their daily care activities with the older adults under their care during a period of 3 months. All the participants were assessed with a socio-demographic questionnaire, 2 questionnaires to analyze their satisfaction with their work and the training received and one questionnaire to analyze their ability to detect and react to memory and behavior problems in the older adults they attended.ResultsThe results showed socio-demographic differences, improvements in satisfaction in family caregivers and a greater commitment in their daily work after the treatment in both groups although these effects could be due to different reasons.ConclusionsThe research shows the benefits of carrying out training programs for caregivers as they significantly increase the quality and satisfaction with caregiving. The study also displays the need to adjust such programs taking into account that the socio-demographic characteristics and training needs are different depending on whether de caregiver is a family member or a professional.     

The Dark at the Bottom of the Stairs: Performance and Participation of Hospitalized Older People

Like all social actors, older people draw on cultural meanings to perform identity. However, when advanced aging brings loss of status as full persons, particularly when it is associated with sickness and dependency, older people can be deemed unsuitable for active medical treatment and care. In addition, loss of status may make it difficult for older people to influence how they and their needs and wants are identified, and how their future life (or death) is conceived. This article discusses how some older people who are admitted to hospital as acute medical emergencies participate in staff's discursive practices to establish a positive clinical identity. By lying low and effacing their distinctiveness as individuals and as social beings, some older people are able to maintain their inclusion in positive medical categories. The article argues that older people are committed to their inclusion in the medical domain because their association with positive medical categories helps them keep at bay the inchoate, the dark at the bottom of the stairs.     

The ‘successful’ return: Caribbean narratives of migration,family, and gender

Research on female migrant caregivers has tended to focus upon the emotional and social problems they encounter working abroad, given women's traditional role as caregivers for their own families. This article analyses how Caribbean women who have returned after a period abroad as domestic workers inscribe their migration experiences within the gendered narrative of the good relative who migrates to help the family left behind and therefore deserves social recognition in the community of origin. It argues that this narrative allows the women to both affirm and reinterpret local family and gender roles within the context of migration. This analysis points to the close connection between narrative structures, accounts of migration experiences, and self‐presentations and suggests that narratives about family and gender roles not only reflect people's lives, but are also a malleable resource that can be (re)shaped to validate a variety of life‐courses.     

协同护理干预对心肌梗死患者康复及照顾者的生活质量和照顾能力的影响

目的：探讨协同护理对心肌梗死患者康复及照顾着生活质量的护理效果。方法：选取60例心肌梗死患者,随机分为对照组和试验组,各30例。对照组采用常规护理,试验组在对照组的基础上采用协同护理进行干预,观察两组患者在死亡、再梗死、梗死后心绞痛、严重心律失常、心力衰竭等临床并症状及生活自理能力方面的差异,采用总体健康状况量表及照顾能力测量表评价干预前后照顾者生活质量与照顾能力。结果：两组患者生活自理能力无差异（P〉0．05）,试验组梗死后心绞痛的发生率低于对照组（P〈0．05）;试验组照顾者的照顾能力及生活质量显著优于对照组,差异有统计学意义（P〈0．01）。结论：协同护理能明显提高心肌梗死患者照顾者的照顾能力及生活质量,利于患者康复。     

Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.     

A Doctor’s Testimony: Medical Neutrality and the Visibility of Palestinian Grievances in Jewish-Israeli Publics

This paper follows the testimony of Izzeldin Abuelaish, a Palestinian physician who bears witness to his experiences working, living, and suffering under Israeli rule. He presents his story as a doctor’s story, drawing on his identity as a medical professional to gain credibility and visibility and to challenge the limited legitimacy of Palestinian grievances. In this paper, I explore his testimony as a medical voice that at once recounts the suffering and loss endured by the Palestinian people and also struggles to negotiate the values associated with being a “reliable” witness. Consequently, I ethnographically examine the social life and reception of his story in Jewish-Israeli publics. In comparison with most Palestinian narratives, Abuelaish’s testimony achieved an extremely rare degree of visibility and sympathy, a phenomenon that calls out for analysis. I identify the boundaries that typically render Palestinian grievances invisible to Israeli publics and suggest how medicine’s self-proclaimed ethos of neutrality served as a channel for crossing them. Finally, I reflect on the political possibilities and limitations of medical witnessing to render suffering visible and arouse compassion toward those construed as a dangerous/enemy Other.     

Veranderingen in de kwaliteit van leven van thuiswonende ouderen: speelt de vorm van zorg een rol?

Changes in the quality of life of older people living at home: does type of care play a role? Purpose: To determine whether a change in physical, psychological and social dimensions of quality of life of older people living at home is associated with receiving formal care, compared to informal care and no care. Method: Data from the observation cycles in 1998 and 2001 of the Longitudinal Aging Study Amsterdam (LASA) were used. Older people receiving formal homecare in 1998 were compared to older people receiving informal care and to older people receiving no care at all in 1998 on subjective scores on 3-year changes in self-perceived health, loneliness, positive affect and satisfaction with life. The data were analysed using linear regression analysis and ANOVA. Results: In all groups there is a change for the worse between 1998 and 2001 in the four aspects of quality of life. Self-perceived health declines significantly more in the group receiving formal care compared to the group without care, but this is explained by a higher score on functional limitations in 1998. Loneliness increases significantly more in the group receiving formal care, even after correction for confounders. In the group receiving formal care the satisfaction with life decreases significantly more compared to the group receiving no care and the group with informal care. An interaction effect with gender was found, showing that after correction for confounders this difference is maintained for the women but not for the men. There is no significant difference between the three care groups regarding changes in positive affect. Conclusion: Older men and women who receive formal home care experience an increase in loneliness, and older women who receive formal care experience less satisfaction with life, compared to women who receive informal care or no care. Future research should confirm these results and investigate the mechanisms underlying these changes. Tijdschr Gerontol Geriatr 2011; 42: 170-183     

Charles Darwin's debt to malthus and Edward Blyth

Conclusion It is not justifiable to accuse Darwin of conscious or unconscious plagiarism. This charge is contrary to the historical evidence and to the extensive information that we have about his character. When Darwin listed the writers on the origin of species by natural selection before himself, he did not mention Blyth, and this omission did not disturb the cordial relations between Darwin and Blyth. Blyth continued to supply Darwin with information which Darwin used in his later publications with due acknowledgment to Blyth. For example, in The Descent of Man, Darwin cited Blyth: Mr. Blyth, as he informs me, saw Indian crows feeding two or three of their companions which were blind.⁶³ Blyth felt no resentment. If he did, he would have so informed Darwin. Blyth did not regard himself as in any sense a predecessor of Darwin and he certainly did not resent Darwin as a plagiarizer of himself. Moreover, Darwin went to a great deal of trouble to find his own predecessors and to give them proper credit.⁶⁴ After Darwin had completed his work on natural selection, he wrote a letter to the Reverend Baden Powell in which he clearly showed recognition of the contribution of others to his own work:No educated person, not even the most ignorant, could suppose I mean to arrogate to myself the origination of the doctrine that species had not been independently created. The only novelty in my work is the attempt to explain how species became modified, and to a certain extent how the theory of descent explains certain large classes of facts; and in these respects I received no assistance from my predecessors.⁶⁵ *** DIRECT SUPPORT *** A8402011 00002     

L’homme souffrant en quête de sens: du récit de soi à l’identité narrative. Une réflexion à partir de Ricœur

The question of personal identity is central to any reflection on mankind and, therefore, immediately relevant to clinical anthropology. The notion of the continuity of personal identity over time represents Ric?ur’s contribution to the question. Upheaval and continuity in life are integrated into self-narrative, enabling temporal permanence of identity, which generates reflective consciousness and its concomitant ethical dimension. But from this anthropological point of view, the subject doesn’t construct a self and world through narrative. On the contrary, it is narrative elements that construct the subject, allowing the subject to make sense of his or her subjective life in the world. Through this narrative conception of the suffering individual, Ric?ur makes a distinct contribution to discourse in clinical anthropology in positing that suffering is a part of a person’s effort to recount their lives.     

The development of infant-caregiver relationships in captive common marmosets (Callithrix jacchus)

The growing independence of infant common marmosets from their caregivers is promoted primarily by their caregivers, who increasingly often prevent the infants from climbing onto them and decreasingly often pick the infants up. Infants achieve independence from their mothers, fathers, and older siblings at different rates and develop characteristically different relationships with them. Infants that are most rejected by caregivers spend the least time on them. When rejected by their parents, infants tend to spend their time with their twins, rather than seeking to climb onto other caregivers. Caregivers do not compensate for unduly large or small amounts of care given by other members of the group. It is argued that if we are to understand the development of caregiver-infant relationships in species with multiple caregivers, we must discover the rules by which infants assess the amount of care they perceive themselves to have received and caregivers assess the amount of care they perceive themselves to have offered. The implications of a simple model based on expected levels of caregiving and careseeking are explored, particularly with respect to competition and compensation.     

祝贺生物化学家、营养学家郑集教授百岁华诞

郑集是我国老一辈著名的生物化学家、营养家家 ,是我国生物化学、营养学的先导者之一 ,衰老生物化学的主要奠基者 .郑集 1 90 0年生于四川省南溪县农村 ,家境贫寒 .他的童年和青年时期都是在贫病交加的情况下度过的 .他没有读过正规中学 ,他克服难以想象的困难考入南京东南大学 (后改为中央大学 ) ,1 92 8年毕业 .后来 ,他有幸出国深造 ,1 934年获美国印第安那大学博士学位 .当即回国 ,开始他的教学和蛋白质化学、营养学的研究工作 .1 937～ 1 946年学校因抗战西迁四川 ,尽管条件极度困难 ,他在工作之余还著书立说 ,创办杂志和筹建学会 .抗战胜利后 ,回到南京重建实验室 ,奋力工作 .1 949年解放以后 ,郑集先后在南京大学 (原名中央大学 )、军医大学和调整后的南京大学工作至今 .1 957年在南京大学建立生物化学专业 ,培养了许多专业人才 .70年代初开辟衰老生化机制的研究 ,提出代谢失调学说 .已经发表的论文和著作达 30 0篇 /本 ,获得国内外荣誉证书和奖状等 50多件 .郑集工作勤奋 ,孜孜不倦 ,几乎将节假日都用来工作 .他性格顽强 ,不怕困难 ,勇于做开创性的工作 .他讲课内容丰富 ,善于启发 ,被学生誉为艺术享受 .他对学生和青年教师全面关心 ,要求严格 ,许多学生畏而敬之 .他生活俭朴 ,品德高尚 ,他将仅     

CIRDO: Smart companion for helping elderly to live at home for longer

Cirdo project is intended to establish new healthcare systems to ensure the safety at home of seniors and people with decreasing independence. In particular, extending “e-lio footnote http://www.technosens.fr/” devise, Cirdo aims to develop an audio/video-based system which makes it possible for elderly to live with a sufficient degree of autonomy. To achieve this goal, generic purposes on video analysis and audio processing are discussed and implemented in the same process. Audio and video analysis algorithms are launched simultaneously and thinks to GPU implementation, the tasks are done in real time. To comply with the requirements set out in the Cirdo project namely: respect privacy and preserve personal data, the processing tasks is performed through background tasks, without any human intrusion. In order to have different types of fall for our experiences, multiple scenarios were designed and performed by several persons. Besides the technical aspect, the project also focuses on generic technology validation by potential users and their human environment (family, caregivers/care takers…). Psychological and ergonomic assessment on the use of services developed was conducted. It focused on the usefulness, usability and accessibility and acceptance of the tool. This evaluation was completed by critical investigation of knowledge acquired by professionals (geriatricians, caregivers school and associations).     

Weiqu,structural injustice and caring for sick older people in rural Chinese families: An empirical ethical study

This paper examines caregiving for sick older family members in the context of socio-economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members’ weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to explicitly protest or make care-related choices. Underpinning people’s weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings.     

Heart Coherence: A New Tool in the Management of Stress on Professionals and Family Caregivers of Patients with Dementia

We describe a stress management intervention intended to reduce the damage and stress impact on the heart physiology and function of a group of caregivers (professional and non-professional) who work with patients with dementia. The intervention consisted in applying heart coherence techniques in a population of 72 caregivers of patients with dementia (42 professional and 29 non-professional caregivers) who had high scores in heart stress and burden tests. Six months after the training they were able to generate appropriate patterns of heart coherence, with a statistically significant decrease in their heart overload. We conclude that training in techniques of heart coherence and positive psychology had effective results on the stress management of the participant caregivers. This was a simple, inexpensive technique with lasting results. To our knowledge this is the first research in Spain studying the application of heart coherence techniques to caregivers of people with dementia.     

Electromyographic biofeedback for relief of tension in the facial and throat muscles of a woodwind musician

Electromyographic(EMG) biofeedback, for the relaxation of specific throat and facial muscles, was given to a woodwind musician. The patient had a nineteen-year history of tics and high levels of tension in his throat and facial muscles. Eventually these problems progressed to a point that interfered with his ability to perform as a professional woodwind musician. Following detoxification from alcohol and Dexamyl, and after a period of psychotherapy, EMG biofeedback relaxation training was started for the muscles specifically showing chronically high tension levels. The EMG training consisted of four phases designed to help the patient progressively lower tension and generalize these newly learned techniques to his professional life. He had a total of twenty treatments of approximately 45 minutes each. This procedure resulted in dramatic reductions in tension levels of the specific throat and facial muscles along with increased proficiency as a muscician and in psychological functioning.