Perceived risk of death in older primary care patients

There is a large gap between life expectancy and healthy life years at age 65. To reduce this gap, it is necessary that people with medical concerns perceived at higher risk of adverse outcomes are readily identified and treated. The same goes for the need to implement prevention plans. The main objectives of this study are to, in a first step, (a) estimate the percentage of medical concerns, (b) identify factors associated with this concern; in a second step, (c) estimate the perceived risk of death, and (d) evaluate the ability of medical concerns to predict this risk. Results show that the existence and severity of medical concerns are crucial in the prediction of perceived risk of death. Early identification of severity of medical concerns and the availability and adequacy of informal caregiving should allow healthcare professionals to promptly initiate an appropriate assessment and treatment of older patients.

Maternal-Fetal Attachment and Health Behaviors among Women with HIV/AIDS

Background: Mothers with HIV often face personal and environmental risks for poor maternal health behaviors and infant neglect, even when HIV transmission to the infant was prevented. Maternal-fetal attachment (MFA), the pre-birth relationship of a woman with her fetus, may be the precursor to maternal caregiving. Using the strengths perspective in social work, which embeds MFA within a socio-ecological conceptual framework, it is hypothesized that high levels of maternal-fetal attachment may protect mothers and infants against poor maternal health behaviors. Objective: To assess whether MFA together with history of substance use, living marital status, planned pregnancy status, and timing of HIV diagnosis predict three desirable maternal health behaviors (pregnancy care, adherence to prenatal antiretroviral therapy–ART, and infant’s screening clinic care) among pregnant women with HIV/AIDS. Method: Prospective observation and hypothesis-testing multivariate analyses. Over 17 consecutive months, all eligible English- or Spanish-speaking pregnant women with HIV ( n = 110) were approached in the principal obstetric and screening clinics in Miami-Dade County, Florida at 24 weeks’ gestation; 82 agreed to enroll. During three data collection periods from enrollment until 16 weeks after childbirth (range: 16 to 32 weeks), participants reported on socio-demographic and predictor variables, MFA, and pregnancy care. Measures of adherence to ART and infant care were extracted from medical records. Findings: Sociodemographic, pregnancy, and HIV disease characteristics in this sample suggest changes in the makeup of HIV-infected pregnant women parallel to the evolution of the HIV epidemic in the USA over the past two decades. The MFA model predicted maternal health behaviors for pregnancy care (R2 = .37), with MFA, marital living status, and planned pregnancy status independently contributing ( = .50, = .28, = .23, respectively). It did not predict adherence to ART medication or infant care. Relevance: These findings provide the first focused evidence of the protective role of MFA against poor maternal health behaviors among pregnant women with HIV, in the presence of adverse life circumstances. Social desirability biases in some self-report measures may limit the findings. Suggestions are made for orienting future inquiry on maternal health behaviors during childbirth toward relationship and protection.

Weaving Futures. Family Transnationalism in the migration from Dominican Republic and Brazil to Spain

This article explores forms of migrant families’ reorganization within a (new) global economic crisis and the hardening of migration control in Europe; based on the cases of Dominican and Brazilian migration to Spain.Our goal is not to characterize the wholeness of strategies from these collectives, instead visualize its heterogeneity. Displacement of Dominican and Brazilian population to Spain shares the role of women as the first link of migration chains. In both cases women are the economic support of transnational families and they lead reunification's processes. Nevertheless, differences in the time spent in the destination country, migratory status, origin (rural-urban), level of education, class and labor insertion in destination country, affect differently, the planning and start up of migration projects, the organization of care and family reunification strategies. These findings question the predominant place granted to national origin in the study of international migration.

Gendered Responses to Global Crisis: Circular Migration and Return among Ecuadorian Families in Spain and Ecuador

This paper analyzes the impact of Spain’s economic crisis on social reproduction strategies of Ecuadorian migrant families in Madrid and Quito. The paper analyzes circular migration experiences and more permanent returns to Ecuador. I argue that these strategies and migrants' greater or lesser capabilities to move between different migration destinations show significant gender differences. On the one hand, men and women make a differential use of their migratory status to deploy transnational strategies and expand their mobility. On the other hand, migrants’ degree of mobility and flexibility with regard to the labor market and transnational social reproduction are derivative of a specific gendered order and sexual division of labor.

Understandings of transnational families in debates on Migration and development

International migration sets in motion a range of significant transnational processes that connect countries and people. How migration interacts with development and how policies might promote and enhance such interactions have, since the turn of the millennium, gained attention on the international agenda. The recognition that transnational practices connect migrants and their families across sending and receiving societies forms part of this debate. The ways in which policy debate employs and understands transnational family ties nevertheless remain underexplored. This article sets out to discern the understandings of the family in two (often intermingled) debates concerned with transnational interactions: The largely state and policydriven discourse on the potential benefits of migration on economic development, and the largely academic transnational family literature focusing on issues of care and the micro-politics of gender and generation. Emphasizing the relation between diverse migration-development dynamics and specific family positions, we ask whether an analytical point of departure in respective transnational motherhood, fatherhood or childhood is linked to emphasizing certain outcomes. We conclude by sketching important strands of inclusions and exclusions of family matters in policy discourse and suggest ways to better integrate a transnational family perspective in global migration-development policy.

“Work of Kinship” done by Families in Santiago de Chile

This paper reports the progress achieved in an anthropological investigation based on which there is now a more in depth understanding of some dimensions of the “kinship work” carried out by families in Chile. The main objective is to analyze the work of maintaining family links performed primarily by women within families and show how this work reproduces gender inequalities within them. On the basis of a longitudinal methodology based on semi-structured interviews, it is concluded that the work of maintaining family links performed by women is crucial but goes unnoticed because kinship obligations are seen as a naturally being part of women’s role in the family.

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Mental Health and Morbidity of Caregivers and Co-Residents of individuals with Dementia: A Quasi-Experimental Design

Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared to co-resident non-caregivers.
Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms, providing a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. 
Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health, were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared to co-resident non-caregivers, adjusting for the clustering of individuals within households.
Results: The cohort consisted of 10,982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared to 8.4% of intense caregivers (>20 hours of care per week). During follow-up the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (ORadj=0.93, 95% CI 0.79, 1.10 and ORadj=0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj=0.65, 95% CI 0.53, 0.79).
Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia, and is associated with a lower mortality risk compared to non-caregiving co-residents.

Att leva nära den palliativa vården, ur de närståendes perspektiv – en litteraturöversikt

Bakgrund: Idag lever många nära en person som drabbats av en livshotande sjukdom. Många som insjuknar har behov av den palliativa vården. Den palliativa vården syftar till att främja livskvalitet och lindra lidande, både för patienten och för de närstående. När en person i familjen blir sjuk är det naturligt för de flesta människor att ta rollen som vårdare och familjen anses ha en stor betydelse i vården av den sjuke. Att erhålla information samt stöd är viktiga förutsättningar för att de närstående ska kunna känna delaktighet i vården. Sjuksköterskan har till uppgift att lindra lidande, främja hälsa samt ge stöd och information. Syfte: Att belysa de närståendes erfarenheter av den palliativa vården. Design: En litteraturöversikt. Metod: 14 vetenskapliga artiklar som blivit publicerade under de senaste fem åren, har lästs flertalet gånger och därefter analyserats utifrån en innehållsanalys, för att finna gemensamma kategorier som beskriver de närståendes erfarenheter/ upplevelser. Resultat: Närheten till döden var något som väckte starka känslor, och situationen beskrevs vara fysiskt, psykiskt och emotionellt påfrestande. Resultatet visar att de närstående tog ett stort ansvar i vården av den sjuke, detta resulterade i ett ökat behov av stöd, framförallt från familj och vänner. En god relation till vårdpersonalen ökade förutsättningarna till en god vård. Trots den svåra situationen kunde meningsfullhet upplevas. Slutsats: Sjukdomen medförde att livssituationen förändrades och en ökad ansvarskänsla uppstod hos den närstående. Stöd från familj och vänner, samt vårdpersonal hade stor betydelse. Kunskap hos vårdpersonalen värderades högt och det var viktigt att den sjuke skulle få dö en värdig och fridfull död.

A representação social do cuidado no programa saúde da família na cidade de Natal

RODRIGUES, M. P.; LIMA, K. C.; RONCALLI, A. G. A representação social do cuidado no programa saúde da família na cidade de Natal. Ciênc. Saúde Coletiva, v. 13, n. 1, p. 71-82. 2008. ISSN 1413-8123.

A representação social do cuidado no programa saúde da família na cidade de Natal

RODRIGUES, Maisa Paulino; LIMA, Kenio Costa de; RONCALLI, Angelo Giuseppe. A representaçao social do cuidado no programa saúde da familia na cidade de Natal. Ciência & Saúde Coletiva, v. 13, n. 1, p. 71-82, 2008.Disponivel em: . Acesso em: 04 out. 2010.

Récits du vieillir « actif » et de la citoyenneté au quotidien : l’expérience des femmes aînées au Québec

Taken as a policy framework, active aging ranks high on most supranational bodies’ agenda. The new political economy of aging portrays “active” citizenship amongst seniors as a key challenge for the years to come. Our research focuses on, first, elderly women’s everyday ‘active’ practices, their meaning and purpose, in the context of Quebec’s active aging policy framework; and second, their day-to-day practical citizenship experiences. Informed by discourse analysis and a narrative approach, the life stories of women 60 to 70 years of age allowed for the identification of a plethora of distinctive old age activity figures. More specifically, four activity figures were identified by which respondents materialize their routine active practices, namely: (1) paid work; (2) voluntary and civic engagement; (3) physical activity; and (4) caregiving. Set against Quebec’s active aging policy framework, these patterns and set of practices that underpin them are clearly in tune with government’s dominant perspectives. Respondents’ narratives also show that active aging connotes a range of ‘ordinary’ activities of daily living, accomplished within people’s private worlds and places of proximity. Despite nuances, tensions and opposition found in dominant public discourse, as well as in active aging practices, a form of counter-discourse does not emerge from respondents’ narratives. To be active is normally the antithesis of immobility and dependence. Thus, to see oneself as active in old age draws on normative, positive assumptions about old age quite difficult to refute; nevertheless, discourses also raise identity and relational issues. In this respect, social inclusion issues cut across all active aging practices described by respondents. Moreover, a range of individual aims and quests underpin activity pattern. Such quests express respondents’ subjective interactions with their social environment; including their actions’ meaning and sense of social inclusiveness in old age. A first quest relates to personal identity and social integration to the world; a second one concerns giving; a third centers on the search for authenticity; whereas the fourth one is connected to a desire for freedom. It is through the objectivising of active practices and related existential pursuits that elderly woman recognize themselves as active citizens, rooted in the community, and variously contributing to society. Accordingly, ‘active’ citizenship experiences are articulated in a dialogic manner between the dimensions of ‘doing’, ‘active’ social practices, and ‘being’ in relation to others, within a context of interdependence. A proposed typology allows for the modeling of four ‘active’ citizenship figures. Overall, despite the role played by power relations and social inequality in structuring aging experiences, in everyday life ‘old age citizenship’ appears as a relational process, embedded in a set of social relations and practices involving individuals, families and communities, whereby elderly women are able to express a sense of agency within their social world.

Rede Social Pessoal de Cuidadores Informais de Adultos com Necessidades Especiais

Objetivo. Devido ao aumento da esperança de vida, os adultos com necessidades especiais vivem mais tempo, sendo os seus principais cuidadores, geralmente familiares, também mais envelhecidos. Tal situação representa novas necessidades específicas de apoio, sendo inúmeros os desafios colocados ao Serviço Social no sentido de garantir o bem-estar da pessoa com incapacidade e dos seus cuidadores. Assim, este estudo tem como objetivo realizar um levantamento das necessidades de apoio e a caraterização da rede social pessoal de apoio do cuidador informal de adultos com necessidades especiais. Participantes. A amostra é constituída por 40 cuidadores informais de adultos com necessidades especiais, integrados na resposta social “Centro de Atividades Ocupacionais-CAO” da Associação de Paralisia Cerebral de Coimbra, de ambos os sexos com idade igual ou superior a 40 anos. Material e métodos. Foi utilizado o Instrumento de Avaliação da Rede Social Pessoal e um questionário para caracterização sociodemográfica e sociofamiliar dos cuidadores, assim como para avaliação de necessidades. Resultados. Aproximadamente um terço dos cuidadores relatou a experiência de níveis moderados de sobrecarga associada à prestação de cuidados, enquanto mais de metade relatou a experiência de níveis elevados e muito elevados dessa sobrecarga; o apoio financeiro foi referido como a forma de apoio mais necessária no presente, ainda que o apoio em residência tenha sido percecionado por cerca de um terço dos cuidadores como a forma de apoio mais necessária no futuro; enquanto mais de metade considerou o apoio domiciliário e de unidade residencial (institucional). Estes cuidadores familiares referiram a "incerteza" e a "esperança" como os sentimentos mais frequentemente experienciados em relação ao futuro das suas vidas. No que respeita às redes sociais, as relações familiares são centrais a nível estrutural; em termos de caraterísticas funcionais da rede, foram observados valores mais elevados para as dimensões de reciprocidade do apoio e satisfação com a rede social. Implicações. Este estudo sublinha a importância da avaliação das necessidades de apoio dos cuidadores familiares de adultos com necessidades especiais. A sua implementação sistemática pode auxiliar a tomada de decisão baseada na evidência empírica para as intervenções do Serviço Social, tais como na planificação e gestão de respostas e serviços sociais, a par do reconhecimento e ativação dos recursos das próprias famílias, de forma a promover a eficiência dos recursos e eficácia das intervenções, focadas no bem-estar do cidadão com deficiência e das suas famílias. / Aim. The general increase in human life expectancy has resulted in greater rates of survival for adults with special care needs, as well as for their ageing family caregivers. This situation poses different and specific support needs, which represent a major challenge in social work interventions aimed at ensuring the well-being of disabled persons and their caregivers. Therefore, this study was aimed to describe the needs for support and the perceived social support network of family caregivers of adults with special care needs. Participants. The sample for this study comprised 40 family caregivers of disabled adults with special care needs, of both genders and aged 40 years old at minimum, who attended a long-term care facility at Coimbra Cerebral Palsy Association. Material and methods. Participants were administered a self-report questionnaire on socio-economic, family and caregiving needs, along with the Instrument for Assessing Personal Social Networks. Results. Nearly one third a family caregivers experienced moderate caregiving burden, while more than half experienced high or very high levels of caregiving burden; financial support was perceived as the most needed form of support in the present, but residential home care was identified as the most needed form of support in the future; while more than a half considered home-based support and residential support viable options for their disabled family members with special care needs. These family caregivers reported "uncertainty" and "hope" as the most common feelings towards their family life in the future. On the topic of social networks, family relations were found to be crucial at the structural level; in terms of functional characteristics of the network, elevated scores were observed for reciprocity of support and satisfaction with the social network. Implications. This study highlights the importance of increasing the specificity of the assessments of needs for support in family caregivers of disabled adults with special care needs. The systematic conduction of these assessments may assist evidence-based decision making in social work interventions, such as for planning and managing social services, acknowledging and activating the families' own resources, and ultimately promote the efficacy and effectiveness 57 interventions aimed at improving the well-being of disabled citizens and their families.

The Broader Impact of Disability Research: Aligning Public Policy with the Experiences of People with Disabilities and Healthcare Providers

Thesis (Ph.D.)--University of Washington, 2016-07

The Impact of Dementia on Women Internationally: an Integrative Review

Women are disproportionately affected by dementia, both in terms of developing dementia and becoming caregivers. We conducted an integrative review of English language literature of the issues affecting women in relation to dementia from an international perspective. The majority of relevant studies were conducted in high income countries, and none were from low-income countries. The effects of caregiving on health, wellbeing and finances are greater for women; issues facing women, particularly in low and middle-income countries need to be better understood. Research should focus on building resilience to help people adjust and cope long term.