Health Disparities - Social Capital, Disability, Internet

Which has a longer history, social or economic capital?
Click the card to flip 👆
1 / 181
Terms in this set (181)
What are Emile Durkheim's 4 types of suicide?1. Altruistic = high integration ex. suicide bombers 2. Anomic = low regulation ex. society doesn't regulate enough- do anything you want 3. Fatalistic = high regulation ex. overly regulated- enslaved 4. Egoistic = low integration ex. not connected to othersWhich contemporary theorists are most important for understanding social capital?Robert Putnam, Nan Lin, Pierre Bourdieu, Robert SampsonRobert Putnam's major work on social capital?Bowling AloneWho most popularized the topic of social capital?Robert PutnamIs Robert Putnam's work individual or structural?Structural"whereas physical capital refers to physical objects and human capital refers to properties of individuals, social capital refers to connections among individuals---social networks and the norms of reciprocity and trustworthiness that arise from them"Robert PutnamRobert Putnam's two types of social capital?1. Bonding 2. BridgingSocial capital that ties together people of same backgroundbondingsocial role of bonding?superglue (stickiness) creates strong in-group loyalty BUT can create strong out-group antagonism, toosocial capital that ties together people of different backgroundsbridgingare bonding and bridging mutually exclusive categories?no Cockerham "bonding causes social reciprocity and solidarity to be stronger, while bridging links communities and individuals to resources and information"What is the benchmark for social capital in communities?Reciprocity Cockerham "a generalized sense of reciprocity is the touchstone or benchmark of social capital. Social reciprocity is the sense of obligation to help others with the understanding that they or someone else will help you at some point in the future."How important is social capital for health?"of all the domains in which I have traced the consequences of social capital, in none is the importance of social connectedness so well established as in the case of health and well-being"How do social networks and social capital matter for health?1) social networks- furnish tangible assistance that reduced stress and increases safety (money, care, transportation) material 2) social netoworks= reinforce health--promoting norms (smoking, alcohol, diet) 3) stronger social networks = able to organize quality medical services (hospitals, clinics) 4) social capital= may serve as a physiological triggering mechanism stimulating the immune system of individuals to block stress and fight diseaseNan Lin (Marxist- economic capital) What distinguishes Lin's approach to social capital?- Lin's concept of social capital is grounded in classical Marxist sociology and especially Marx's analysis of how capital emerges from social relations between capitalists (bourgeoise) and workers through the process of commodity production and consumptionHow does Nan Lin define social capital?investments in social relations with expected marketplace returnsLin " social capital is rooted in social networks and social relations and is conceived as resources embedded in a social structure that are accessed and or mobilized in purposive actions. Individuals may change positions within the structure, but social capital remains associated with the position rather than the person"social relations = make $$$Does Nan Lin apply his approach to health?even though he is a medical sociologist, he has not applied his approach extensively to healthWho was the first sociologist to formulate the concept of social capital?Pierre BourdieuWho was the one to say social capital is multidimensional?Pierre BourdieuHow many forms of capital does Bourdieu recognize?3 1- Economic= money and property rights 2- Cultural= taste and education 3- Social= social obligations (connections) and titles (doctor, general, earl)How does Pierre Bourdieu define capital?Social capital is the aggregate of the actual or potential resources which are linked to possession of a durable network of more or less institutionalized relationships of mutual acquaintance and recognition--or in other words--- TO MEMBERSHIP IN A GROUP--- which provides each of its members with the backing of the collectively owned capital, a 'credential which entitles them to credit, in the various sense of the world"Is social capital individual or collective in nature?Bourdieu views economic and cultural capital as owned by the person (individual), social capital is a resource that accrues to individuals through their membership in particular groups or networks. Consequently, social capital is a characteristic of social networks from which individuals draw benefits. economic ($) and cultural (tastes) =individual social capital= can't be owned. resource is structuralHow does Bourdieu's approach compare with that of Putnam and Lin?Bourdieu emphasizes the resources of networks, while Putnam emphasizes the cohesion of networks. Like Lin, Bourdieu also recognizes class disparities in social capital. He maintains that the amount of social capital a person possesses depends on (1) the size of networks whose connections the person can effectively mobilize and (2) the volume of capital possessed by the person that he or she can claim through connections to those networks.Does Bourdieu apply his approach to health?He did not apply his approach directly to health, and only a few studies in medical sociology use his approach He is a resource for understanding how social capital relates to inequality in other forms of capital---especially economic and cultural.How has the meaning of community changed from previous eras?neighborhood ties are no longer a norm in many urban settings there is less face to face interaction and therefore, fewer intimate connectionsRobert Sampson Social characteristics of communities= linked to health of residentstypically residents in low SES areas= poorer healthWho created the collective efficacy theory?Robert SampsonWhat is collective efficacy?capacity of neighborhoods to mobilize social action for positive outcomesHow is collective efficacy measured?Sampson asked residents is neighbors could be counted on to act if children were skipping school, children were spray painting graffiti, children were showing disrespect, fight broke out in front of house, and the fire station was threatened with budget cuts.What did Sampson discover about collective efficacy?Neighborhood clusters ranking high in collective efficacy showed significantly lower rates of violence, homicide, and low-birth weights than those neighborhoods low in such efficacy, leading Sampson to suggest that collective efficacy has implications for health generally.What is the connection between collective efficacy and health?Individuals living in neighborhoods with higher levels of collective efficacy reported better overall physical health. They found that education was strongly associated with self-rated physical health, but this effect largely disappeared in neighborhoods was low collective efficacy.How does all of this ( collective efficacy) relate to social capital?the benefits of education for health- which have proved robust and substantial across a range of studies- are dependent on social context. If this finding holds in future studies, it would help illustrate why low education and poor health are synonymous: poorly educated people find it difficult to rise above the effects of low social capital to improve their health.Is social capital more subjective or objective?Both subjective (cognitive; internal) and objective (structural; outside of you) subjective: positive feelings from awareness of belonging to supportive community that promote sense of well being objective= provision of assistance when in need (advice, help when sick, law enforcement, medical services)Is social capita more individual or structural?it is NOT the case that subjective=individual and objective=structural rather social capital= resources embedded in communities that individuals can draw upon to improve one's life situation (including health)What is the main takeaway on social capital and health?social capital may be able to enhance health and extend longevity not only through the provision of mutual aid and support, but also through the maintenance of social norms promoting positive health lifestyles like smoking, alcohol use, diet, exercise. Social capital has potential for serving as a social mechanism linking inequality to health or conversely, enhancing the health of people in neighborhoods and communities with high levels of it.Ichiro Kawachi "Social Capital and Health" Concept of social capital= one of the most popular exports from sociology to population health BUT MUCH DEBATE REMAINS ABOUT WHAT ?1) How should we define social capital? 2) Is it and individual or collective attribute? 3) Can it be used as a health promoting strategy?Two famous definition of social capital?Pierre Bourdieu- social capital is the "aggregate of actual or potential resources linked to possession of a durable network" James Coleman- "social capital is defined by its function. It is not a single entity, but a variety of different entities having two characteristics in common: they all consist of some aspect of social structure, and they facilitate certain actions of individuals who are within the structure."How are Bourdieu's and Colemans definitions different?Bourdieu= social network perspective (access to resources determined by position in network) Coleman= social cohesion perspective (trust, reciprocity, exchanges, norms, sanctions)what determines inequality in network?position in networkBourdieu= focuses on competition within a field using resources that are unequally distributed Coleman= focuses on consensus, including trustworthiness of social environment, reciprocal exchanges, information channels, norms and sanctionsBourdieu- social network Coleman= social cohesionSocial network= Bourdieu, Lin, Cohesion= Coleman and PutnamWhich approach, network (Bourdieu) or cohesion (Coleman) is more dominant in population health?ColemanIs social capital an attribute of the individual or the collective?Individual approach "Methodological individualists tend to view individual actors within a social structure as either possessing or lacking the ability to secure benefits by virtue of their membership in networks" Collective approach "treats it as an extra individual, contextual influence on health outcomes. This practice is in turn reflected by measurement approaches that emphasize THE DEGREE TO WHICH SOCIAL COHESION EXISTS WITHIN A GROUP (if one hews to the network-based definition of social capital, by attempts to describe group characteristics through whole network analysis"What are mechanisms by which greater social capital ( as a group-level construct) influences population health1) better equipped to undertake collective action 2) better able to enforce and maintain social norms 3) more reciprocity exchanges between network members 4) wider diffusion of innovations via information channelsIs having greater social capital always beneficial?each mechanism is equally applicable to the so called downside of social capital. Thus, a community with high levels of collective efficacy could just as easily use those resources to oppress and discriminate against outsiders (ex. the South Boston riots by whites during the busing and forced desegregation of schools during the 1960s come to mind)Measuring depends on how social capital is defined individual or collective? network-based or cohesion-based? 4 basic methods of measurement1) surveys of individuals or groups 2)sociometric methods -group 3) experimental elicitation of trust and cooperation 4) qualitative approacheswhat is the most common measurement method in population health for assessing social capital at both collective and individual levelssurveysLin's Position Generator-measures social capital at individual (or collective) level from network perspective -Individual level= respondent asked whether they have access to people with high prestige occupations Why? knowing high-prestige people=assumed to correlate with ability to access resources Critiques= occupational prestige NOT relevant for all types of resources (receiving emotional support from a surgeon is not necessarily better than receiving it from a priest)van der Gaag and Snijder's Resource Generator-measures social capital at individual level from network perspective -checklist of social resources that respondents can access through their networks - items phrased "Do you know anyone who..." -ex. owns a car, has knowledge about financial matters, can babysit your child Resource Generator has been reported to correlate with health outcomesIndividual Perceptions and Behaviorsmeasures social capital at individuals level from COHESION perspectiveIndividual Perceptionsitems such as trustworthiness of neighborsIndividual Behaviorsitems such as participation in civic associationsinstruments that measure social cohesion typically consist of multi item scales that inquire about things such as trustworthiness of neighbors, norms of reciprocity and mutual aid, and the extent to which residents share the same valuesCriticism of survey instruments:-include items that are antecedents or consequences of social capital, but not part of social capital itself -rely on proxies of social capital (crime rates, voting participation) -are tautological or circular thinking/reasoning (a community with low crime rate must have high social capital because it has low crime rateEgocentricmeasures social capital in networks from individual perspective ex. how many friends do you have, how often do you see them?Sociometricmeasures social capital in entire social networks method: characterize entire networks by interviewing all alters nominated by ego and all of their alters until saturating reachedMajor hurdle of social network analysis?defining boundaries of networks some situations boundaries are easily identified like schools and companies others are difficult to identify like neighborhoodsEconomists inherently distrust survey responses about perceptions, opinions, and attitudes advocate instead for experiential approaches attempt to measure trust by eliciting observable behavior (dropping envelope containing money)Qualitative Approaches small-scale studies that delve more deeply into complex social situationsTYPOLOGY OF MEASUREMENT INDIVIDUAL NETWORK-BASED : position generator, resource generator INDIVIDUAL COHESION BASED : individual perception surveys and individual behavior surveys GROUP NETWORK BASED: sociometric or whole social network analysis GROUP COHESION BASED: survey responses aggregated to group levelMost convincing design of empirical evidence?multilevel study the merit of multilevel study is being able to test the counterfactual question "if two individuals with exchangeable characteristics (i.e. the same sociodemographic characteristics, occupying the same SES position, with the same level of social ties and trust as others) were observed in a high social capital community and a low social capital community, would their health outcomes differ, all other things equal?What is the problem with individual level studies of social capital?they tend to be limited by common method bias: individuals' perceptions of the trustworthiness of their neighbors are potentially contaminated by unobserved characteristics such as personality and negative affectivity that simultaneously influence health status" that being said... measures of association between social cohesion and health outcomes= fairly consistentWhat do we know about social cohesion and inequality?stronger association between social cohesion and health outcomes in LESS egalitarian (equal/classless) societies this pattern seems to argue against the stand of political theory that posits that strong welfare states tend to crowd out associational activities and norms of mutual assistance. If anything, social cohesion would appear to be even more salient in explaining the health variations among citizens belonging to societies with weak-safety net provisions, for example, in health care, public education, and unemployment protections"Where should researchers focus attention in the future?improve the measurement of social capital by applying reliable and valid survey instruments, or by attempting whole network-based approaches. Panel data (longitudinal study), objective assessments of health status, and multilevel analysis are good starting points for methodological rigor, but in addition, research needs to strengthen causal inference, such as...natural experimentsWhat are majority of population health studies focused on?health effects of social cohesionmost convincing designmultilevel studywhat arguments are made against using social capital as a health promoting strategy?we should be focusing on poverty reduction, and social capital is a distraction from that (economic capital first) explaining poor health as lack of social capital=victim blaming even if we could improve social cohesion, it sometimes has negative consequences2 major questions for using concept of social capital to improve health1) can interventions actually build social capital? 2) will strengthening social capital actually improve health? people such as Robert Putnam say YESBoth the amount and type of social capital matters.example: strength of ties weak: more effective at distributing information strong: more effective for collective action example: bonding and bridging bonding: social capital with homogeneous groupsHow many people around the world experience disability?Data=2010 estimate from WHO and World Bank analysis of over 100 surveys -17% of the world's population (over 1 billion people) experience disabilityHow has disability been classified?Saad Nagi influential model in 1965 pathology, impairment, functional limitation, disabilityPathologyinterruption in normal processes as body attempt to return to normal stateImpairmentanatomical or physiological abnormalities (e.g. amputated limb, multiple sclerosis) deviations from normalityFunctional Limitationrestrictions on ability to perform activities in usual roles use of bodyDisabilitypattern of behavior that evolves in situations of long term or continued impairments that are associated with functional limitations-NagiNagi focused on solely the person living with disability What's missing?contextual factorsPhillip Wood and Mike Bury = WHO International Classification of Functioning, Disability, and Health in 1980-based on work of Nagi - 2 parts 1) functioning and disability 2) contextual factors this model was widely adopted to classify health-related domains that are associated with health conditions, some of which may result in restrictions in activity and role performance.Critics of these approached accuse them of-medicalizing disability - focusing on deficits rather than differences - encouraging labeling -reinforcing passivity among disabled people - deemphasizing physical and social environments in producing disability - ignoring power and stigma and discrimination - diminishing responsibility of state in addressing disability issues -failing to emphasize fundamental rights of all human beings we've created a category socially constructed label that gives you an identityWhat effect did the criticisms have?WHO responded by developing International Classification of Diseases and Functioning Disability (IFC) in 2001 -based on combining US, Swedish, and British models of disabilityUS modelsstrongly affected by the medical model, emphasized distinction between able bodied and disabled, focused on individuals, stressed therapeutic interventions to improve functioningSwedish modelsdefined disability as differences among humans resulting from interaction between individuals and environment, emphasized adapting environment (infrastructure) to individuals to normalize their lives.British Modelsinspired by Marxism, defined disability as relationships between people with impairments and society that excludes themHow did the field continue to develop in the US?60s- 70s= minority group models developed for issues of race, gender, and ethnicity 1980s= Harlan Hahn developed similar minority-group model for disability 1980s= Irving Zola set tone for disabled scholar-activists, publicly announced and celebrated his disability from polio, developed interdisciplinary disabilities studies, traded value neutrality of Max Weber for activism of C. Wright Mills 1990= Americans with Disabilities Act passed, based on work of Hahn1960-1980s= division of labor based on definition of disability(1) Disability as a causal factor in restricting physical functioning and social activity -used mainly by demographers and epidemiologists -U.S. Census Bureau, WHO, World Bank, CDC (2) Disability studied within narrow academic areas ex. disabilities such as physical, mental, developmental, intellectual, cognitive, sensory this was in part due to traditional divisions in specialties in medicine that health with various impairments... each of these research areas produced classic work that not only highlighted different types of disability but also developed a collection of concepts and theories.Erving Goffman on stigmaone of the major contributions to the study of disability in terms of concepts and content. his distinctions among stigmas due to abominations of the body, blemishes of individual character, and tribal stigmas of race, nation, and religion, generated a body of work that flourished to this dayHoward Becker's Labeling Theoryalso referred to as social reaction theory, which developed out of sociological theories of deviance, focused on majority representations of 'different' people as being deviant, subsequently 'labeled', treated stereotypically, and often discriminated against.Mental Illness 60s-80s in US= focus on mental illness as a disabilityDavid Mechanicwork on illness experience, organization and financing care for mentally ill, criminalization of mental illnessErving Goffmanresearch on mental illness stimulated by his concepts of stigma, total institutions, labeling theory total institutions: settings where you can live your entire life, you never have to leaveIs mental illness caused by social labels?yes and no yes- Thomas Scheff= society labels certain behaviors deviant and labels people deviant for doing those behaviors; people labeled mentally ill live up to label by increasingly doing deviant behaviors Albrecht: society, then, according to this position, makes people mentally ill by its need to categorize and explain deviant behavior 1)label behavior 2) if person does that behavior, they receive that label behavior intensifies because of that label, intensification becomes mental illness A----->B Illness----->Label Label------->illness no! Walter Grove= contra Scheff, mental illness based on observable behavior, no just social labels -label did not create original behavior! label came after behavior! Somewhat! Albrecht: researchers have conducted numerous studies which suggest that labeling does affect the classification, expectations, and treatment of the mentally ill but these processes are affected by the history of the behavior, the situation, the environment, and biological factors!How is medicalization involved in creating disability?Experienced condition----> deviant condition----> medicalized condition----->. disability common conditions like hyperactivity, erectile dysfunction, and feeling down or blue were defined as deviant and made into health problems worthy of medical attention. As such deviant conditions were medicalized, they also became conceptualized as impairments and viewed behaviorally as disabilities.How have people responded to the medicalization of disability?Disability rights movement= originated in US and UK "directly confronted the forces of medicalization and successfully resulted in the Rehabilitation Act of 1973. Section 504, which asserts that people with disabilities have equal rights that prevent discriminations based on the disability in programs or activities that receive federal funding. Further activism and lobbying produced Americans with Disabilities Act of 1990 which expanded previous legislation by prohibiting discrimination in employment, housing, public accommodations, education, and public services.Intersectionality theory=discrimination is multiplicative not just additive dimensions such as race, class, gender, and orientation produce unique configurations Disability Rights Movement= draws attention to intersecting dynamic of disabilityAlbrecht "these multiple stigmas created serious health disparities and resulted in constrained life chances for disabled women, particularly if they were minorities. They are poorer than disabled men, are more likely to be heads of households, are often viewed as 'asexual' are at greater risk for sexual abuse than are non disabled women or disabled men, and have less access to services than do men with disabilities."Albrecht: "researchers could be well advised to use similar approaches to investigate the epidemiology of disability, the influence of social class on social networks, social ties to knowledge and care, support networks, and quality of life for disabled people"future of dis studiesSociology of the BodyBryan Turner argues that sociology of the body has two main paths: Michel Focault= human body is socially produced, governed, and regulated Maurice Merleau- Ponty= phenomenological (how objects appear to the human consciousness) focus on interaction of (1) subjective body of personal experience (2) objectified body of medical discourse (3) body image gained from social relationshipsMichael Focaultdisability is socially constructed, and rehabilitation is way of 'normalizing' aberrations of the body 100% socially constructedMerleau-Pontydisabled people must deal with conflict between what they experience, expectations of health care professionals, and expectations of people in their social networks.Disability Inequalitiesdisability rates INCREASE among those who are poor, immigrants, racial/ethnic minorities, living in poor neighborhoods, having limited accede to care, facing other environmental barriers Causal direction: poverty might lead to and/or result from disability many disability activists have HIGHER levels of privilege (education, status) which means that they do not speak for poor, uneducated, and hidden disabled people. 'seriously disabled people do not necessarily have a poorer quality of life than have less disabled people or the larger population, and poor blacks do not have as highly developed a disability culture as working and middle-class whites have"Citizenship/Human Rightsincreasing emphasis on human rights of disabled people ex. UN Convention on Rights of Persons with Disabilities in 2008Physical and Social EnvironmentsWHO and International Classification of Diseases and Functioning with Disability = emphasize role of environment in producing and maintaining barriers for disabled people. - breaking down barriers is a key social policy approach to integrating disabled people into the community and increasing their levels of independence, activity, and participation.Disability BiologySociologists: beginning to combine social, health, and biological markers in studies. BUT few are currently joining geneticists, biologists, and physicians in studying disability at both social and biological levels simultaneously.FURTURE OF DISABILITY STUDIES-social networks -sociology of body -disability inequalities -citizenship/human rights -physical and social environments -disability biologyHow to improve disability research(1) study disability across classification boundaries (e.g. physical disabilities, mental health, substance disorders) especially important because people living with disabilities = often dealing with comorbidities (2) use multilevel modeling techniques (to study biological markers as nested within social categories) (3) gather longitudinal data sets using cohort design (to make stronger arguments about causation) (4) use mixed methods (quantitative, qualitative) (to provide more holistic understanding of disabilities) (5) include disabled people in research design (to address the statement "nothing about us without us")Weaknesses of sociology of disability-external validity: most research is oriented toward Western world and may not be generalizable to rest of world -ignoring comorbidity (studying physical and mental disabilities separately) -not working more closely with geneticists, neurobiologists, epidemiologists using biomarkersClive Seale's "death, Dying, and the Right to Die"death in late-modern mass societies= often framed as purely psychological, subjective experience BUT dying, grief, and care provision= shaped by social and historical forces there is considerable cross-cultural variation in the degree to which personal control of the dying process is seen to be desirable, partly influenced by level of affluence, education, and religiosity, as well as cultural patterns associated with race or ethnicity. The right-to-die movement largely prospers in wealthier societies and appeals most to educated sections of the population that have good access to health care.What are the main influences on the experience of dying in late modern societies?increase in life expectancy worldwide life expectancy = below 40 until 1830s ----> 48 in 1955 ----->67 in 2006 death is strongly linked to being old in ancient world, death was linked to being young, in war, living in famine epidemiological shift from acute to chronic illness infectious disease, epidemics, malnutrition----?cancer, heart disease, stroke the social exclusion of elderly people and their placement in care homes where many experience a 'shameful' death in an unwelcome feature of contemporary societies and is death DENYINGHow is death managed in contemporary societies?-death is often managed by professionals in sequestered institutions ex. rising proportion of deaths in hospitals and declining proportions of deaths at home in wealthier countriesWhat are outcomes of having death managed by professionals in sequestered institutions?death denial modern individuals rarely encounter dying people and are relatively unskilled in managing the realities of death, both in terms of responding to the emotions of dying and bereavement and in dealing with the physical aspects of dying and dead bodies. death brokering medical authorities are dominant in providing acceptable explanations for death, thus rendering it 'culturally manageable and understandable'Why would society manage death through professionals in sequestered institutions?to ensure the minimum of disruption to the smooth functioning of social institutionsHow does the modern approach to death differ from previous approaches?All of this might be regarded, as in Parsons, as part of facing up to the reality of death rather than denying it. nevertheless, such sequestration means that many people lack familiarity with death when compared to individual experience in smaller, premodern social groups, where the end of a life is generally witnessed and in many cases, experienced as very disruptive to the continuity of group social life. Funerals in such groups are then rituals to revive community spirit as well as to address grief.How does modern approach to death differ from previous approached continued?scientific framing "medical perspective to locate death in the body as the natural outcome of disease... this contribution has largely substituted for religious defenses against death, or adds to them for individual able to hold on to both scientific and religious understanding of life"What mechanisms enable modern society to locate death in the body?death certificate no longer does it say "interoperable living" or "cold and whiskey" on certificates, or "poverty" or "bad luck" instead, a causally linked chain of bodily processes resulting in death is required doctors opinions doctors routinely lie in their characterization of death as painlessWhere did the hospice and palliative care movement originate?modernity= epidemiological shift from acute to chronic illness -shift produced longer dying trajectories -modern reaction to longer dying trajectories= sequestration and death denial hospice and palliative care=reaction to sequestration and death denialWhat is a 'good death' according to hospice and palliative care?1) something that involves emotional accompaniment 2) awareness of oncoming death 3) and psychological and relationship development 4) during the final phase of last farewells 5) coupled with expert medical and nursing care 6) devoted to the alleviation of sufferingWhere did this concept of a 'good death' come from?Seale argues this definition continues themes derived during the shift from hunting-gathering to pastoral mode of production this view of 'revivalistic'= utilizing older notions to critique approach to death found in Western modernityHow does 'revivalism' contribute to the cultural toolkit of modern grievers?revivalism resists sequestration, brings topics of death and dying to public attention, and invites psychological and medical expertiseHas the revivalism of hospice and palliative care completely resisted modernity?noCritiques of hospice and palliative care?developed mainly to treat cancer patients...but cancer is not the main cause of death -other chronic illnesses have different trajectoriesGlaser and Strauss's "awareness of dying" (1956)main purpose is to describe 4 "awareness contexts" ---closed, suspicion, pretense, and open---in which dying can occur. closed= the dying person is unaware that they are dying but relatives and caregivers are aware open= all openly acknowledge the person's terminal diseaseRight to die movement?social movement with the goal of granting control of timing and manner of death to individuals -overturning legal prohibitions against assisted dying (euthanasia and physicians assisted suicide)Methods used to end life in the right-to-die movement?euthanasia= physician administers lethal agent physician-assisted suicide= patient administers lethal agent with doctor's help continuous deep sedation= often removes need for either euthanasia or physician assisted suicideWhere is the right-to-die movement most active?Wealthier Western nations with extensive health care coverage members tend to be more educated and affluent than general population Assisted dying=illegal in most of US but legal in DC, California, Colorado, Oregon, Vermont, Washington, Hawaii, disputed in MontanaWhere did the right-to-die movement originate?eugenics ideas about improving health and aspirations to conserve scarce societal resources goal to relieve sufferingWhat values are at stake in the debate over a right to die?Individualism vs. Communitarianism Humanism vs. Religion expression of the individualism that pervades Western nations, representing resistance to using readily available medical technology to preserve life at the expense of its quality opposition to the right to die stems in part from a religious and communitarian concept of human existence, which downplays individual needs in favor of a divine will or the needs of the community at largeHow do opponents frame their argument against a right to die?Legalizing euthanasia= slippery slope from "right to die" to "duty to die" ex. poor elderly people who become a burden to those around them might feel obligated to use assisted dying going to get out of control and lead to something we never wantedDoes intersectionality enter into the debate over a right to die?age, poverty, and gender - elderly women are likely to feel the obligation to opt for assisted dying because of their multiple disadvantages later in life. has been proven, elderly women with no family members with an emotional investment in the continuation of their lives were shown to be more likely than others to feel that they were better off dead.US opinion polls show greater support among whites than among the black population for legalizing euthanasia. African Americans see legalization of physician assisted suicide not as the opening up of an opportunity, but merely as permission for another way of ending black lives.How popular is the right-to-die movement in the West?opinion polls=widespread support for legalization of assisted dying, which has grown since mid-20th century. Doctors=less likely to support assisted dying than public. doctors professional ethics commit them to providing patients with comfort yet enshrine the role of medicine as a defense against deathWhat does data from the Netherlands tell us about the existence of a slippery slope?Netherlands= euthanasia legal since early 1990s a much smaller percentage of deaths are physician assisted 0.4-0.8% involve people whose lives are ended without an explicit request usually because they were unable to communicate, but had requested this in the past. signs of unrelieved distress if there was a slippery slope= would expect a higher rate of assisted dying mainly among people who are elderly, female, and not suffering from cancer. BUT, assisted dying MORE popular among people who are younger, men, and suffering from cancerWhat does evidence from Oregon tell us about slippery slope existence?over six year period, showing did not include any African Americans, were almost all covered by health insurance, were largely affected by cancer, were either enrolled in hospice or had declined enrollment, slightly more likely to be men, and had a higher average level of education. no evidence of slippery slopeWhat does data from Switzerland show about a slipper slope?748 cases of suicide but main Swiss right to die association during a 10 year period -more likely to involve women, particularly older groups involved, about 21% suffered nonfatal conditions such as rheumatoid arthritis, osteoporosis, chronic pain syndrome, or even blindness death rose three-fold (300%)What might account for the differences between the finding from Netherland and Oregon vs. Switzerlandswiss regulations concerning assisted dying are more open than Netherlands and Oregon where medical second opinions are required slippery slope is a real possibility without regulation to protect the socially disadvantagedParson-death affirming is one supported by sociological investigation members of modern societies are organized to manage the problem of dying people, with medical endeavors, and health care institutions providing special treatment, as well as being part of a larger medical system, for the avoidance of illness and death.How have sociologists studied the illness experience?Parsons in the 1950s: how patients manage the sick role Suchman in the 1960s: how patients maneuver stages of an illness career Strauss in the 1970s: how patients experience the illness itself (e.g. subject experience of being sick, strategies for managing illness.)What methods were used to study the illness experience?typically qualitative methods (e.g. interviews) Topics= experiences of stigmatized diseases (e.g. epilepsy, HIV/AIDS), contested illnesses (fibromyalgia), psychiatric disorders (e.g. major depression), genetic disorders, etc. Major focus: how sufferers manage identities, biographical disruptions, and narrative reconstruction.Two consistent finding from experience-of-illness studies through roughly the year 2000 are that with few exceptions there were no illness subcultures and that illness was a profoundly privatizing experience...other than hospitals, there were few settings where people with the same illness interacted with one another.Wasn't HIV/AIDS a subculture?large, active gay subculture did organize around HIV/AIDS, BUT this was atypical, most illness sufferers had little communication with others suffering with same disorder.How did internet change the situation?In the past two decades, the Internet has changed all that. There are not hundreds of illness subcultures, and illness is not a public as well as private experience. In short, for many people, the Internet has changed the experience of illness.What are the origins of the Internet?1969= 4 computers in US linked together to transmit military info to one another Until late 1980s= most Internet communication was text based emails. 1990= WWW was first web browser used to search for information (rather than waiting for authors to distribute it) 1993= Mosaic was first web browser for the masses 1998= GoogleHow do people in the US use the Internet in relation to health?100 million = regularly access the Internet for health info. 66% of them= searching for info on specific diseases On an given day more people go online for health info than consult a health professionalHow has the Internet affected health disparities?Digital divide= Internet used to access health info LESS frequently by lower-income people, African Americans (compared with whites), men, less educated people, people with less health insurance, and older people. digital divide along racial lines is shrinking especially for African Americans and HispanicsWhat types of sites do people access for health info?Institutional Sites Personal sites (blogs, online chatrooms, bulletin boards, discussion sites) Overall, massive amount of health info is available online Includes scientific, personal/experiential, and commercial info.How accurate is health info on the internet?Must be evaluated with a careful eye quality of information may be improving though! in a recent study, analyzing 343 websites about breast cancer, authors found that only 5.2% of the sites contained inaccurate info.How has the production of online knowledge been changing?Major trend= internet users are becoming producers of knowledge in Web 2.0 era, individuals can construct their own websites, blogs, etc. about their health issues, transforming them from 'consumers of health information and care producers of health information and care'How has the distribution of online knowledge affected the public?Internet publicizes once limited knowledge Internet can empower patients with knowledge and options by offering information previously limited to medical experts and the potential to increase control over their healthWhat is the history of self-help groups and illnesses?in person self help groups= Long history but limited number of participants internet= both expands and revolutionizes self help traditionHow has the internet changed the illness experience most directly and dramatically?Internet has most directly and dramatically altered the experience of illness through online electronic support groups (ESGs) How? Before internet= illness was mainly a private affair with advent of Internet=emergence of illness subcultures, making illness more shared and publicHow do ESG's create illness subcultures?increasingly, individuals are communicating with others who have the same illness, thereby creating thousands of virtue self-help groups incorporating nearly all illnesses, many with a range of groups from different sources and anglesWhat types of discourse exists within ESGs?-emotional support -moral judgements (e.g. debates about living with HIV) Thus, ESGs= mainly transmitters of existing alternative moral discourses (rather incubators of new messages)What types of illnesses are most likely to evoke online activity?-the disordered represented on the Internet differ from traditional self-help groups. Chronic illnesses= especially rare and debilitating conditions Contested illnesses= such as fibromyalgia, chronic fatigue syndrome Stigmatized illnesses= such as epilepsy, STD'sWhat are the benefits of electronic support groups?Improves communication maintains privacy decreases fear of discriminationWhat kind of people are likely to use Internet for health?The 'compensation model of Internet use' posits that those who are the most socially awkward will utilize and derive more 'benefit' from the internet. The experience of those suffering from stigmatized illnesses, physical disabilities, and multiple chronic illnesses could potentially be the most affected by internet interactionWhat drives Internet usage among patients?uncertainty about illness seems to be a factor driving Internet usage. Individuals with multiple chronic illnesses utilized the Internet more than did other respondents (regardless of condition) due to an increased amount of uncertainty with their situations.What are online social movements?NOT online extensions of existing social movements. Rather, they arise as a function of online interaction Groups move beyond experiential exchange and support to advocate for an alternative interpretation of an illness or the recognition of a previously unknown condition as an illnessExample of an online social movement?Pro-ana sites= challenge the dominant medical treatment model of anorexia as an eating disorder Frames= "anorexia is a lifestyle, not an illess anti-recovery stance= helping people manage anorexia safely without removing it as a crutch apotemnophilia=attraction to becoming an amputee wannabes= perfectly healthy people who 'wanna be' amputees seeking legitimization by updating the DSM so that they can have disorder treated with surgery the wannabes use a claim similar to that of transexuals--they are 'trapped in the wrong body,' and medical treatment could fix thispro-ana= attempting to demedicalize anorexia wannabes= attempting to medicalize desire to be amputeesIn what ways might the internet diminish physician authority?having access to medical info online=decreases patient dependence on physicians doctors accessing computers in front of patients= can undermine confidence in physicians BUT doctors unfamiliar with technology= can appear incompetent to patientsIs it possible that Internet may increase physician authority?Some have suggested that the Internet and the wide access to medical information give the appearance of informational empowerment for patients but may be extending the reach and power of medicine by creating a kind of indirect management of the populationDoes having Internet access lead patients to forgo doctors altogether?No. Most patients use the Internet as a supplement to- not a replacement of- doctorsHow do doctors respond to patients who use online medical resources?They strategically attempt to avoid a breakdown in their own authoritymost online info=reinforces biomedical views only a small proportion participate and post messages to internet individuals with more difficulties with their illness, its treatment, or their medical care are more likely to post or seek information or affirmation... ESGs can present an unbalanced picture of the experience of illness Facebook has proven big for ESGs, only difference is now participants are linking to individual profile pages internet may raise risk of 'cyberchondira'=people believe they are suffering from illnesses they discover and read about online beyond excessive self-diagnosis, the internet allows easy and accessible purchasing of many 'prescription' drugs without a prescription neither prescriptions or FDA approval required by pharmaceutical suppliers in Canada or MexicoReligion and Health religious organizations founded many early US hospitals religion continues to be important resource for ill people 80% of Americans believe religious practices can help with medical treatments 25% report being cured of an illness through prayer or other religious practice 60% of public and 20% of medical professionals believe miracles can save people in a vegetative state. 60% want physicians to ask about spiritual histories if they become ill 66% of hospital have chaplains on staff examples of religious resources to address health: prayer chains on the internet, services for health and healing Secularization thesis= strong influence of secularization thesis in sociology (declining religious belief, practice, and authority in Modern world) is why we don't discuss it more despite its commonality religion: system of symbols which act to establish powerful, pervasive, and long lasting moods and motivations in men by formulating conceptions of a general order of existence and clothing these conceptions with such an aura of factuality that the moods and motivations seem uniquely realistic." religion is usually institutions structured around the worship of sacred beings, and spirituality is related to a wider range ways people find meaning in their lives, however we use these term interchangeably because they are not used consistently in research literature Europe-medieval hospitals-first institutionalized public care for sick people, providing mainly shelter and solace 18th-19th century= dramatic expansion of hospital care staring in England, Europe, North America, and overseas Christian missions early= American colonies= clergy provided most medical care 19th century= advances in scientific medicine and medical education; states passed laws requiring medical training to practice Early US hospitals: charity institutions for poor, gravely ill, and desperate Catholic and Jewish hospitals were created for patients not treated well in other facilities, and for Catholic and Jewish doctors who could not find work in them in the past century and a half the formal organizational distance between religion and biomedical organizations has increased.more than half of physicians believe religion/spirituality influences people's health by helping them cope, giving them a positive state of mind, and providing emotional and practical support. Conservative and moderate Protestants are less accepting than others of the practice of physician assisted suicide and terminal palliative carehow religion/spirituality has lead to quantitative indicators of physical and mental health generally suggest a positive relationship but are limited by their reliance on survey data, attention to individuals outside their institutional contexts and their tendency to make causal arguments in the absence of longitudinal data, which raises concern about reverse causality health behaviors, social support within religious communities, psychosocial resources and belief structures which give meaning to life are the mechanisms through which religion/spirituality may lead people to have better health. more frequent religious service attendance-----> lower mortality rates (esp for women) higher religiosity----> higher existential security (which is linked to psychological health) higher religiosity----> lower levels of depressive symptoms (hopelessness, suicidal thoughts)half of studies of religion and health focus on people over 60 so address mainly chronic illness, physical disability, pain management, and psychological distress that accompanies such conditions Black Americans are more likely than whites to turn to religion when having health problems and generally receive greater health benefits from religious practices (but not from social support) than do whites... higher rates of religious services attended by Blacks and Latinos does not fully dissipate the negative health effects associated with SES factors such as levels of social support, income, educationLimitations on studies of religion and healthepidemiological analysis of survey data of individuals outside of institutional contexts (family, house of worship) studies frame questions in positive terms, which could underplay possible negative impact of religion to health studies focus mainly on Christians and Jews, ignoring variation within groups and other faith traditions inconsistent definitions, conceptualizations of religion and spirituality, the use of self reports on key measures, reliance on cross sectional data, tendency to make causal arguments in absence of longitudinal data without attention to issues of reverse causation, which raises significant questions about findings.How are religious and spiritual issues addressed in hospitals?mainly by the 10,000 chaplains working in US hospitalshow are religious and spiritual issues addressed in congregations?devote regular services and special gatherings and rituals to health and healing physical, emotional, mental, and spiritual wellbeingrecommendations for future research on religion and health?-increase qualitative research on connection between specific religious beliefs and practices on health beliefs and practices -increase investigation into beliefs about miracles among medical professionals and laypeople