Calidad de vida y sobrecarga de los cuidadores de pacientes con daño cerebral adquirido

Introduction

The health impact of acquired brain injury (ABI) is not only apparent in the patient, but also in the loss of health related quality of life (HRQol) of their carers. The objectives of this study were to measure the loss of HRQol as well as the burden of the carers of patients with ABI.

Material and methods

A retrospective study was conducted with 76 carers of patients with ABI. A questionnaire was used to collect information on the sociodemographic aspects, carer burden (Zarit Scale) and the HRQol (EuroQol Questionnaire) of the carers. A multiple linear regression model was constructed to analyse the effect of the different variables.

Results

The carers were predominantly women over 50 years, retired or dedicated to domestic tasks and who cared for their husband or one of their parents. One third showed a high risk of claudication. The mean HRQol obtained with the EuroQol went from a similar score to that of the general population (0.9) in the group without burden, to 0.67 in the group with risk of claudication. The regression models explained the burden better than the loss in quality of life.

Conclusions

Carers of patients with brain injury suffer a significant loss in HRQol compared to the general population. The deterioration arises from the mental dimensions and depends on the level of burden.     

Formal and informal support received by carers of elderly dependents.

This study describes the activity of informal carers who look after elderly dependents and particularly investigates the role of formal services in supporting these carers in maintaining dependent, elderly people in the community. The results lend no support to the view that families neglect their elderly relatives or that community services displace the role of informal carers, but rather suggest that carers support elderly dependents at great cost to themselves and with inadequate support from community services.     

Death from cancer at home: the carers' perspective.

OBJECTIVES--To collect information from principal carers of people who had died at home with cancer; to identify areas of support which need improvement. DESIGN--Semistructured interviews with carers two to four months after the death. SETTING--38 general practices in the Exeter, Torbay, and Plymouth health districts. SUBJECTS--207 carers. MAIN OUTCOME MEASURES--Services received by carers and quality of support. RESULTS--161 of 207 patients were aged 60 or over. 88 carers were aged under 60, 110 were 60-80, and 9 were > 80. Carers had difficulty in getting urgent professional help in only 15 out of 177 cases. 124 carers were not given advice on financial help and 174 were not told of support available from local charities. Although pain was well controlled, 25% of patients had no relief of other symptoms. Overall, 150 carers considered the support excellent, 45 good, 8 moderate, 2 poor, and 2 had no comment. CONCLUSIONS--Although care has improved in recent years, health professionals need to give carers more advice about help available outside health services. Domestic help was often needed earlier. Better appreciation of carers'' problems is needed.     

Evaluation of a stroke family care worker: results of a randomised controlled trial.

OBJECTIVE: To examine the effect of contact with a stroke family care worker on the physical, social, and psychological status of stroke patients and their carers. DESIGN: Randomised controlled trial with broad entry criteria and blinded outcome assessment six months after randomisation. SETTING: A well organised stroke service in an Edinburgh teaching hospital. SUBJECTS: 417 patients with an acute stroke in the previous 30 days randomly allocated to be contacted by a stroke family care worker (210) or to receive standard care (207). The patients represented 67% of all stroke patients assessed at the hospital during the study period. MAIN OUTCOME MEASURES: Patient completed Barthel index, Frenchay activities index, general health questionnaire, hospital anxiety and depression scale, social adjustment scale, mental adjustment to stroke scale, and patient satisfaction questionnaire; carer completed Frenchay activities index, general health questionnaire, hospital anxiety and depression scale, social adjustment scale, caregiving bassles scale, and carer satisfaction questionnaire. RESULTS: The groups were balanced for all important baseline variables. There were no significant differences in physical outcomes in patients or carers, though patients in the treatment group were possibly more helpless less well adjusted socially, and more depressed, whereas carers in the treatment group were possibly less hassled and anxious. However, both patients and carers in the group contacted by the stroke family care worker expressed significantly greater satisfaction with certain aspects of their care, in particular those related to communication and support. CONCLUSIONS: The introduction of a stroke family care worker improved patients'' and their carers'' satisfaction with services and may have had some effect on psychological and social outcomes but did not improve measures of patients'' physical wellbeing.     

Ethical dilemmas in early detection of dementia. An inventory of moral intuitions in practice

In this article we present an inventory of the moral intuitions of the health care workers who work in the field of early detection of dementia. The effects of pharmacological treatment and professional care and support may improve when dementia is detected in an early stage. Furthermore, the patient (and his family) can prepare themselves for the period to come. Health care workers recognize moral problems and tensions concerning early detection that are related to the question whether persons will benefit from knowledge in an earlier stage of dementia, because this knowledge can be a heavy burden. We asked general practitioners, home care workers, employees of the so-called 'Memory clinic' and specialists, what ethical intuitions they recognize in practice. They mentioned the following questions: when are health care professionals allowed to take initiative, is causing worries and concerns problematic, and should a diagnosis always to be told? We conclude after a first analysis that many moral questions derive from the fact that many health care professionals lack knowledge of the wishes and interests of the elderly. At the same time they try to justify their actions on the (presupposed) consent of the elderly person. We suggest that the general norm 'only act when the patient wants to be helped' in health care should also apply to detection of dementia, although it should not be taken too strictly. Another justification for early detection can be found in the benefits for the elderly people, when their wishes are no longer expressed.     

Everyday Life, Culture, and Recovery: Carer Experiences in Care Homes for Individuals with Severe Mental Illness

Supported homes or Care Homes (CHs) have become in-services that play a fundamental role in social-health systems, particularly in mental health systems in Europe and the United States. They provide settings where residents' day-to-day routines are supervised by in-house non-clinician professional carers. Ten semi-structured in-depth interviews were conducted by expert professional carers of persons with schizophrenia to explore interactions and activities between carers and users living in special "Care Homes". Analysis focused primarily on the functions of everyday life and daily routines in the recovery process. Social positioning analysis was used to investigate meanings and subjective experiences of professionals. The analysis revealed the importance of personal interactions in daily routines for recovery. We identified two main concerns guiding professionals' interactions with users: "Bring [users] to the here and now" and "give them the initiative to start actions". We suggest that CHs promote the construction of privileged identity in western urban societies, forming part of the process towards recovery and better social integration.     

Submitting articles to the BMJ

ObjectiveTo investigate how doctors engage with patients with psychotic illness in routine consultations.DesignConversation analysis of 32 consultations between psychiatrists and patients with schizophrenia or schizoaffective disorder.SettingTwo psychiatric outpatient clinics in east London and south west London.Participants7 psychiatrists and 32 patients with schizophrenia or schizoaffective disorder.ResultsPatients actively attempted to talk about the content of their psychotic symptoms in consultations by asking direct questions, repeating their questions and utterances, and producing these utterances in the concluding part of the consultation. In response, doctors hesitated, responded with a question rather than with an answer, and smiled or laughed (when informal carers were present), indicating that they were reluctant to engage with patients'' concerns about their psychotic symptoms.ConclusionsPatients repeatedly attempted to talk about the content of their psychotic symptoms, which was a source of noticeable interactional tension and difficulty. Addressing patients'' concerns about their illness may lead to a more satisfactory outcome of the consultation and improve engagement of such patients in the health services.

What is already known on this topic

Patients with psychotic illness are difficult to engage in the health servicesNo research has been published on how doctors engage with these patients in consultations

What this study adds

Patients actively attempt to talk about the content of their psychotic symptomsDoctors'' reluctance and discomfort in engaging with this topic is apparentAddressing patients'' concerns may lead to a more satisfactory outcome of the consultation and improve engagement with services     

Health inequities in influenza transmission and surveillance

The lower an individual’s socioeconomic position, the higher their risk of poor health in low-, middle-, and high-income settings alike. As health inequities grow, it is imperative that we develop an empirically-driven mechanistic understanding of the determinants of health disparities, and capture disease burden in at-risk populations to prevent exacerbation of disparities. Past work has been limited in data or scope and has thus fallen short of generalizable insights. Here, we integrate empirical data from observational studies and large-scale healthcare data with models to characterize the dynamics and spatial heterogeneity of health disparities in an infectious disease case study: influenza. We find that variation in social and healthcare-based determinants exacerbates influenza epidemics, and that low socioeconomic status (SES) individuals disproportionately bear the burden of infection. We also identify geographical hotspots of influenza burden in low SES populations, much of which is overlooked in traditional influenza surveillance, and find that these differences are most predicted by variation in susceptibility and access to sickness absenteeism. Our results highlight that the effect of overlapping factors is synergistic and that reducing this intersectionality can significantly reduce inequities. Additionally, health disparities are expressed geographically, and targeting public health efforts spatially may be an efficient use of resources to abate inequities. The association between health and socioeconomic prosperity has a long history in the epidemiological literature; addressing health inequities in respiratory-transmitted infectious disease burden is an important step towards social justice in public health, and ignoring them promises to pose a serious threat.     

Specialist nurse support for patients with stroke in the community: a randomised controlled trial.

OBJECTIVE--To evaluate whether specialist nurse visits enhance the social integration and perceived health of patients with stroke or alleviate stress in carers in longer term stroke care. DESIGN--Stratified randomised controlled trial; both groups assessed at time of recruitment and at 3, 6, and 12 months. SETTING--Patients with disability related to new stroke who lived in their own homes in the Bradford Metropolitan District. SUBJECTS--240 patients aged 60 years or over, randomly allocated to control group (n = 120) or intervention group (n = 120). Intervention--Visits by specialist outreach nurses over 12 months to provide information, advice, and support; minimum of six visits during the first six months. The control group received no visits. MAIN OUTCOME MEASURES--The Barthel index (functional ability), the Frenchay activities index (social activity), the Nottingham health profile (perceived health status). Stress among carers was indicated by the general health questionnaire-28 (28 items). The nurses recorded their interventions in trial diaries. RESULTS--There were no significant differences in perceived health, social activities, or stress among carers between the treatment and control groups at any of the assessments points. A subgroup of mildly disabled patients with stroke (Barthel index 15-19) had an improved social outcome at six months (Frenchay activities index, Median difference 3 (95% confidence interval 0 to 6; P = 0.03) and for the full 12 months of follow up (analysis of covariance P = 0.01) compared with the control group. CONCLUSIONS--The specialist nurse intervention resulted in a small improvement in social activities only for the mildly disabled patients. No proved strategy yet exists that can be recommended to address the psychosocial difficulties of patients with stroke and their families.     

Depression and other psychiatric morbidity in carers of elderly people living at home.

OBJECTIVE--To describe the mental health of a community sample of carers of elderly people with dementia, depression, or physical disability and to compare that with the mental health of other adults living in the household and of those living alone. DESIGN--Assessment of psychiatric morbidity and physical disability with standardised questionnaire in randomly selected enumeration districts; subjects were interviewed at home. SETTING--London Borough of Islington. SUBJECTS--700 people aged > or = 65 and other coresidents. MAIN OUTCOME MEASURE--Depression measured with standardised interview. RESULTS--The prevalence of depression was not significantly higher in carers overall (15%) than in coresidents (11%). Being a woman carer was a significant predictor of psychiatric illness. Depression was more common in the carers of people with a psychiatric disorder than in coresidents (24% v 11%, P < 0.05) and in those living alone (19%). Depression was most common (47%) in women carers of people with dementia. CONCLUSION--The increase in psychiatric morbidity reported in carers of people with psychiatric disorders may reflect the lack of a confiding relationship.     

The Efficiency of Informality: Quantifying Greenhouse Gas Reductions from Informal Recycling in Bogotá, Colombia

The dual challenges of increasing urbanization and consumption are centered in cities in the Global South, where growing waste production threatens public and environmental health. Reuse and recycling are widely recognized to provide broad environmental benefits. Although most industrialized cities replaced their informal recycling sectors with municipally run recycling schemes and have had to build their recycling rates anew, most industrializing cities in the Global South remain centers of recycling and reuse through the work of informal workers. Bogotá, Colombia, is emblematic of many cities in the Global South seeking to modernize their city, in part by formalizing their recycling system. This article asks: What are the greenhouse gas (GHG) emission implications of this modernization? Using interviews and observation in combination with life cycle assessment, we compare GHG emissions resulting from the baseline case (1,200 tonnes per day [t/d] recycled through informal channels; 5,700 t/d landfilled) to three alternative scenarios that formalize the recycling sector: the prohibition of informal recycling; a reduction in informal recycling coupled with a scale‐up of formalized recycling; and the replacement of informal recycling with formal recycling. We find that the baseline recycling scenario, dependent on the informal sector only, emits far fewer GHGs than do all formalization scenarios. Three processes drive the results, in order of magnitude: informal textile reuse (largest GHG savings); landfilling (largest emitter of GHGs); and metal recycling (GHG savings). A hybrid model could combine the incentives and efficiency of the informal system with the better working conditions of the municipal one.     

“They See Us As Machines:” The Experience of Recent Immigrant Women in the Low Wage Informal Labor Sector

This study explores the organization of work and occupational health risk as elicited from recently immigrated women (n = 8) who have been in the US for less than three years and employed in informal work sectors such as cleaning and factory work in the greater Boston area in Massachusetts. Additional interviews (n = 8) with Community Key Informants with knowledge of this sector and representatives of temporary employment agencies in the area provides further context to the interviews conducted with recent immigrant women. These results were also compared with our immigrant occupational health survey, a large project that spawned this study. Responses from the study participants suggest health outcomes consistent with being a day-laborer scholarship, new immigrant women are especially at higher risk within these low wage informal work sectors. A difference in health experiences based on ethnicity and occupation was also observed. Low skilled temporary jobs are fashioned around meeting the job performance expectations of the employer; the worker’s needs are hardly addressed, resulting in low work standards, little worker protection and poor health outcomes. The rising prevalence of non-standard employment or informal labor sector requires that policies or labor market legislation be revised to meet the needs presented by these marginalized workers.     

Reconsidering the underestimated burden caused by neglected tropical diseases

It is generally acknowledged that the burden caused by neglected tropical diseases needs to be reassessed. Not only are there several important diseases unaccounted for, but new information suggests they have a more substantial impact on health than initially thought. Looking at the tropical diseases as a group makes sense: they tend to cluster in the same poor populations and, to make progress with their control, they will have to be dealt with in an integrated manner. Measuring the effect of such integrated control is likely to reveal the real impact of tropical diseases on human health and wellbeing.     

Environmental stochasticity in dispersal areas can explain the "mysterious" disappearance of breeding populations

We present the results of an individual-based simulation model, showing that increasing the mortality of non-breeding dispersers within settlement areas can lead to the extinction of species and (meta)populations in a subtle way. This is because the areas where dispersers settle are generally unknown or difficult to detect. Consequently, fewer efforts are devoted to the conservation of these sites than to the conservation of breeding territories. Additionally, high mortality rates affecting the floater sector of a population become evident in the breeding sector only after several of years, when it is too difficult or too late to halt the decline. As a result, because most conservation projects on endangered species and populations mainly focus on breeding areas, many current efforts may be wasted in locations other than those in which conservation would be really necessary and effective.     

Climate change and coastal waterbird populations – past declines and future impacts

Considerable attention has been given to the impact of climate change on avian populations over the last decade. In this paper we examine two issues with respect to coastal bird populations in the UK: (1) is there any evidence that current populations are declining due to climate change, and (2) how might we predict the response of populations in the future? We review the cause of population decline in two species associated with saltmarsh habitats. The abundance of Common Redshank Tringa totanus breeding on saltmarsh declined by about 23% between the mid-1980s and mid-1990s, but the decline appears to have been caused by an increase in grazing pressure. The number of Twite Carduelis flavirostris wintering on the coast of East Anglia has declined dramatically over recent decades; there is evidence linking this decline with habitat loss but a causal role for climate change is unclear. These examples illustrate that climate change could be having population-level impacts now, but also show that it is dangerous to become too narrowly focused on single issues affecting coastal birds. Making predictions about how populations might respond to future climate change depends on an adequate understanding of important ecological processes at an appropriate spatial scale. We illustrate this with recent work conducted on the Icelandic population of Black-tailed Godwits Limosa limosa islandica that shows large-scale regulatory processes. Most predictive models to date have focused on local populations (single estuary or a group of neighbouring estuaries). We discuss the role such models might play in risk assessment, and the need for them to be linked to larger-scale ecological processes. We argue that future work needs to focus on spatial scale issues and on linking physical models of coastal environments with important ecological processes.     

Zorgzame vrienden en buren als mantelzorgers van oudere volwassenen: een vergelijking met kinderen

This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.     

Does becoming an informal caregiver make your health worse? A longitudinal analysis across Europe

ObjectiveTo determine whether becoming an informal caregiver in Europe has a significant effect on health status, compared with non-informal caregivers, distinguishing by place of residence (in or outside the home of the care receivers) and country. And to determine whether there is an adaptation effect after the passage of time.MethodsThe Survey of Health, Aging and Retirement in Europe (2004–2017) was used. Propensity score matching was applied to analyse the differences in the health status of people who became informal carers between different periods and those who did not. We considered short-term (2–3 years after the shock) and medium-term effects (4–5 years).ResultsIn the short term, the probability of those who became informal caregivers being depressed was 3.7% points (p.p.) higher than among their counterparts, being higher among those who lived in the care recipients’ homes (12.8 p.p.) and those providing care outside and at home (12.9 p.p.). Significant differences in the probability of being depressed were also observed by country (Southern and Eastern Europe), and in countries with low expenditure on long-term care (LTC). Those effects remained in the medium term. No significant effects were found in cancer, stroke, heart attack and diabetes.ConclusionsThe results might help to concentrate a major effort of any policy in the field of mental health on the period immediately after the negative shock, especially for those caregivers who live with the care receiver, for those in Southern and Eastern Europe and in countries with low expenditure on LTC.     

Fine-scale spatial genetic structure in predominantly selfing plants with limited seed dispersal:a rule or exception?

Gene flow at a fine scale is still poorly understood despite its recognized importance for plant population demographic and genetic processes.We tested the hypothesis that intensity of gene flow will be lower and strength of spatial genetic structure(SGS) will be higher in more peripheral populations because of lower population density.The study was performed on the predominantly selfing Avena sterilis and included:(1) direct measurement of dispersal in a controlled environment;and(2) analyses of SGS in three natural populations,sampled in linear transects at fixed increasing inter-plant distances.We found that in A.sterilis major seed dispersal is by gravity in close(less than 2 m) vicinity of the mother plant,with a minor additional effect of wind.Analysis of SGS with six nuclear SSRs revealed a significant autocorrelation for the distance class of 1 m only in the most peripheral desert population,while in the two core populations with Mediterranean conditions,no genetic structure was found.Our results support the hypothesis that intensity of SGS increases from the species core to periphery as a result of decreased within-population gene flow related to low plant density.Our findings also show that predominant self-pollination and highly localized seed dispersal lead to SGS at a very fine scale,but only if plant density is not too high.     

Commodes: inconvenient conveniences.

OBJECTIVES--To investigate use of commodes and attitudes of users and carers to them. DESIGN--Interview with semi-structured questionnaire of subjects supplied with commodes from Leeds community appliance centre. SUBJECTS--140 users of a commode and 105 of their carers. RESULTS--Main reasons for being supplied with a commode were impaired mobility (130 subjects), difficulty in climbing stairs (128), and urinary incontinence (127). Main concerns of users and carers were lack of privacy (120 subjects felt embarrassed about using their commode, and 96 would not use it if someone was present); unpleasant smells (especially for 20 subjects who were confined to one room); physical appearance of commode chair (101 users said it had an unfavourable appearance, and 44 had tried to disguise it); and lack of follow up after commode was supplied (only 15 users and carers knew who to contact if there were problems). Users generally either had very positive or very negative attitudes to their commodes but most carers viewed them very negatively, especially with regard to cleaning them. CONCLUSIONS--Health professionals should be aware of people''s need for privacy when advising them where to keep their commode. A standard commode is inappropriate for people confined to one room, and alternatives such as a chemical toilet should be considered. Regular follow up is needed to identify any problems such as uncomfortable or unsafe chairs. More thought should be given to the appearance of commodes in their design.     

“How Local Is Local?”—A Review of Practical and Conceptual Issues in the Genetics of Restoration

In plant conservation, restoration (the augmentation or reestablishment of an extinct population or community) is a valuable tool to mitigate the loss of habitat. However, restoration efforts can result in the introduction of novel genes and genotypes into populations when plant materials used are not of local origin. This movement is potentially important because many plant species are subdivided into populations that are adapted to local environmental conditions. Here we focus on genetic concerns arising from ongoing restoration efforts, where often little is known about “How local is local?” (i.e., the geographic or environmental scale over which plant species are adapted). We review the major issues regarding gene flow and local adaptation in the restoration of natural plant populations. Finally, we offer some practical, commonsense guidelines for the consideration of genetic structure when restoring natural plant populations.