Individual Life Circumstances Research Articles

Identification of Prodromal Parkinson Disease: We May Be Able to But Should We?

Parkinson disease (PD) remains a progressive and incurable disease. Research over the past decade provides strong evidence of a detectible phase before the clinical diagnosis, known as the prodromal phase of PD (pPD). In this article, we review the debate about disclosure of risk of progression to PD and related disorders to individuals through the perspectives of the pillars of medical ethics: beneficence, nonmaleficence, autonomy, and justice. There is evidence that lifestyle modification may have positive effects on onset and progression of PD, providing justification of potential benefit. From a societal perspective, a diagnosis of pPD could allow targeted recruitment to disease-modifying trials. Regarding nonmaleficence, direct evidence that catastrophic reactions are scarce is largely derived from studies of monogenic conditions, which may not be generalizable. Diagnosis of PD can be traumatic, and appropriate communication and evaluation of circumstances to weigh up disclosure is crucial. Future research should therefore examine the potential harms of early and of false-positive diagnoses and specifically examine these matters in diverse populations. Autonomy balances the right to know and the right not to know, so an individualized patient-centered approach and shared decision-making is essential, acknowledging that knowledge of being in the prodromal phase could prolong autonomy in the longer term. Distributive justice brings focus toward health care and related planning at the individual and societal level and affects the search for disease modification in PD. We must acknowledge that waiting for established disease states is likely to be too little, too late and results in failures of expensive trials and wasted participant and researcher effort. Ultimately, clinicians must arrive at a decision with the patient that solicits and integrates patients' goals, taking into account their individual life circumstances, perspectives, and philosophies, recognizing that one size cannot fit all.

Loneliness among homeless-experienced older adults with cognitive or functional impairments: qualitative findings from the HOPE HOME study

BackgroundLoneliness is more common in older adults and those who face structural vulnerabilities, including homelessness. The homeless population is aging in the United States; now, 48% of single homeless adults are 50 and older. We know little about loneliness among older adults who have experienced homelessness. We aimed to describe the loneliness experience among homeless-experienced older adults with cognitive and functional impairments and the individual, social, and structural conditions that shaped these loneliness experiences.MethodsWe purposively sampled 22 older adults from the HOPE HOME study, a longitudinal cohort study among adults aged 50 years or older experiencing homelessness in Oakland, California. We conducted in-depth interviews about participants perceived social support and social isolation. We conducted qualitative content analysis.ResultsTwenty participants discussed loneliness experience, who had a median age of 57 and were mostly Black (80%) and men (65%). We developed a typology of participants’ loneliness experience and explored the individual, social, and structural conditions under which each loneliness experience occurred. We categorized the loneliness experience into four groups: (1) “lonely– distressed”, characterized by physical impairment and severe isolation; (2) “lonely– rather be isolated”, reflecting deliberate social isolation as a result of trauma, marginalization and aging-related resignation; (3) “lonely– transient”, as a result of aging, acceptance and grieving; and (4) “not lonely”– characterized by stability and connection despite having experienced homelessness.ConclusionsLoneliness is a complex and heterogenous social phenomenon, with homeless-experienced older adults with cognitive or functional impairments exhibiting diverse loneliness experiences based on their individual life circumstances and needs. While the most distressing loneliness experience occurred among those with physical impairment and mobility challenges, social and structural factors such as interpersonal and structural violence during homelessness shaped these experiences.

Design and evaluation options of multimedia applications to support the care of people with mild dementia

In order to cognitively and physically activate people with dementia (MMD) in institutional settings, there are numerous touch-based multimedia applications specifically designed for this target group that are actually being used in practice. In contrast, the use of similar applications in domestic settings has been relatively limited. This study is based on 11expert interviews guided by questions and examines design options and requirements for application content as well as requirements for study designs to provide evidence of the effectiveness of touch-based multimedia applications for MMD and their caregiving relatives (PA). There is ahigh degree of consensus regarding the criteria for requirements for touch-based multimedia applications. Acceptance is highly dependent on user competence, usage practices, experiences and incentive structures; however, there are diverse opinions about their structural and content-related design. The quality of life is mentioned as an essential evaluation parameter for multimedia applications. The highly variable individual life circumstances of MMD and their PAs, along with limited access options and alack of suitability of the multimedia applications, may be causal factors for their relatively limited use, especially in domestic settings. Daily performance capabilities and individual disease progression pose special requirements for the scientific evaluation and the demonstration of the effectiveness of touch-based multimedia applications.

Differences in Chinese Women's Understanding of Feminism: The Influence of Socioeconomic Status, Family and Education (Take Henan Province as an Example)

Although gender equality is a fundamental policy in China. However, gender inequality is still prevalent in daily life and work where women always suffer from gender discrimination. With the rapid development of the Internet in recent years, the issue of gender inequality has received more attention and has been more widely discussed. In order to safeguard the equal rights of Chinese women, feminists have consciously made their voices heard through the Internet and other channels. However, due to the fact that Chinese women's individual life circumstances are clearly differentiated and differently influenced by their own socio-economic status, family environment and education, it is necessary to understand the extent of Chinese women's recognition of feminism. This study will target women in H province and collect data through online questionnaires and interviews, including socioeconomic status, family background, education level, and understanding of feminism. This article uses a Likert scale for the research, Chi-square test, t-test and multiple regression analysis to analyze the quantitative data to determine the influence of SES, family and education on feminist awareness awakening among women in H region. As the third largest province in China in terms of resident population and the largest province in terms of household registration, the development potential of women in H region is evident to all. This study will systematically investigate H region women in H region understanding of feminism and explore the factors that influence Chinese women to have different levels of recognition of feminism, which can help unite women in their struggle to protect women's common rights. The study will improve our understanding of women's affirmative action and suggest more effective guidelines for women's affirmative action strategies.

Care, choice, complexities: The circulations of hormone therapy in early menopause

Navigating whether to prescribe hormone replacement therapy (HRT) requires that health practitioners approach a woman’s individual life circumstances, and early menopause (EM) as a particularly intricate experience and condition. Drawing on qualitative interviews with 16 practitioners in Australia, this article examines the modalities of care that emerge in the nexus of EM and HRT. Early menopause emerges in participants’ narratives as far from a ‘unitary’ medical condition, but rather one that reaches across other embodied changes for women which may be moderated by HRT. Thus, different modes of care and tensions surface, and we suggest that these constitute an oscillation between ‘caring for’ and ‘caring with’ in medical practice. This oscillation combines experimentation with and adjustment of HRT, while contending with responsibility, risk and choice, and shared, knowledgeable care. Our goal is not to neatly split ‘caring for’ from ‘caring with’. Rather, we discuss how ambiguities of care circulate through a complex diagnosis and its treatment options. We argue that care, in this context, manifests as potentiality and as a set of flexible practices that at times cannot be fully disentangled from issues of choice and control, and HRT itself.

Differentiated Embedding and Social Relationships Among Russian Migrant Physicians in Finland: A Narrative Socio‐Analysis

Migrants’ processes of (dis)embedding in local and transnational social networks have received growing attention in recent years, but most research focuses on low‐skilled migration. This study explores the affordances and challenges that Russian physicians, as a high‐skilled migrant group in Finland, experience in these processes in work and non‐work domains. Based on semi‐structured biographical interviews with 26 Russian physicians, the study employs Bourdieu’s socio‐analysis to analyze their narratives. The results reveal that Russian migrant physicians negotiate and experience differentiated embedding across work–life domains in local and transnational contexts. They mostly develop collegial relationships with Finnish colleagues and benefit from fulfilling professional relationships in the work domain. However, alongside time and efforts needed for building social ties, various factors often impede friendship making and socialization with locals beyond the work domain. These physicians cope with individual life circumstances through their enduring and supportive relationships with their Russian relatives and colleagues–friends. These results indicate that high‐skilled migrants have a greater opportunity to connect professionally with locals than low‐skilled migrants, but experience similar challenges to the latter in building close personal relationships.

Dangerous vulnerability: Simultaneous prohibition and coercion in Palestinian-Israeli single mothers’ relationships with men

The objective of this study is to broaden understanding of how vulnerability is shaped more by social, cultural, and religious institutions than by individual life circumstances, exploring the case of Palestinian-Israeli single mothers’ relationships with men. Research often determines the vulnerability of a group, such as women migrants from an ethnic minority, by specific demographic characteristics. This common assumption has been challenged by calls to understand vulnerability as social processes intersecting with the action of the state and other social institutions. The study provides a nuanced examination of the social processes through which Palestinian-Israeli single mothers are simultaneously forbidden from and coerced into having relationships with men, drawing on a systematic analysis of data from semi-structured, in-depth interviews of 36 Palestinian-Israeli single mothers. The analysis exposed several mechanisms which forbid single mothers from having relationships with men, alongside mechanisms that permit, often even coerce, such relationships. These mechanisms are embedded in interrelated structural factors—massive differences in gender power relations, vast gender economic disparities, inability of most single mothers to support their families independently, and state policy of non-intervention in domestic affairs of ethnic minorities, and create a state of “dangerous vulnerability.”

Delivering Personalized Care at a Distance: How Telemedicine Can Foster Getting to Know the Patient as a Person.

The promise of precision medicine is based on the use of new technologies to better characterize patients by defining individuals in the areas of genomics, proteomics, metabolomics and other aspects of biologic variability. Wise application of modern technology can similarly transform health visits with patients, allowing for better characterization of the patient’s individual life circumstances than possible in a traditional office visit. The use of, and experience with, telemedicine have increased significantly during the COVID-19 pandemic. Patients and clinicians report high satisfaction with telemedicine, and the quality of communication and patient-centeredness experienced in this setting are both rated highly. In this article, we explore the benefits offered by telemedicine in facilitating personalized care with particular focus on telemedicine delivered by video platforms. We propose strategies and skills specific to the effective implementation of personalized telemedicine, drawing on literature in patient-centered communication and home visits. While traditional in-person office visits continue to offer important opportunities such as thorough physical examination and the potential for enhanced non-verbal communication, telemedicine offers many important advantages that can facilitate the process of getting to know the patient as a person.

Listening to the Patient: A Typology of Contextual Red Flags in Disease Management Encounters

Patients send clues, often unwittingly, when they are grappling with a life challenge that complicates their care. For instance, a patient may lose control of a previously well-managed chronic condition or start missing appointments. When explored, these clues help clinicians uncover the life circumstance impacting the individual's ability to manage their health and health care. Such clues are termed "contextual red flags." Effective care requires recognizing them, asking about them, and customizing the care plan where feasible. We sought to develop a typology of contextual red flags by analyzing audio recordings along with the medical records of encounters between patients and providers in outpatient clinics. During the course of 3 studies on physician attention to patient context conducted over a 5-year span (2012-2016), 4 full-time coders listened to the audios and reviewed the medical records of 2963 clinician-patient encounters. A list of contextual red flags was accrued and categorized until saturation was achieved. A total of 70 contextual red flags were sorted into 9 categories, comprising a typology of contextual red flags: uncontrolled chronic conditions; appointment adherence; resource utilization; medication adherence; adherence to plan of care; significant weight loss/gain; patient knowledge of health or health care status; medical equipment/supplies adherence; other. A relatively small number of clues that patients are struggling to self-manage their care warrant clinicians' exploring opportunities to adapt care plans to individual life circumstances. These contextual red flags group into an even smaller set of logical categories, providing a framework to guide clinicians about when to elicit additional information from patients about life challenges they are facing.

“So that's why I'm scared of these methods”: Locating contraceptive side effects in embodied life circumstances in Burundi and eastern Democratic Republic of the Congo

Contraceptive side effects (SE) are often portrayed as either unproblematic trade-offs for pregnancy prevention or misconceptions and fears that negatively affect individuals' contraceptive decisions. Little attention is given, however, to wider, socially-rooted meanings and rationales for these feared and experienced SE. Through inductive analysis of in-depth interviews conducted with women and men from rural Burundi and South Kivu province, Democratic Republic of the Congo between 2013 and 2016, we locate contraceptive SE narratives in individuals' broader and changing life circumstances. We extracted two conceptual categories related to SE from participants' narratives: 1) bodily symptoms attributed to modern contraception; and 2) social meanings of SE in everyday life. We then situate these narratives in context – sources of knowledge on SE, barriers to addressing SE, and individuals/couples' life circumstances – to understand their embodied realities. Using Krieger's ecosocial theory, our findings suggest that in rural contexts of poverty, uncertainty and power inequities the empirical realities of SE are legitimate concerns stemming from actual or anticipated bodily symptoms located in the embodied life circumstances of individuals and couples.

Psychobiography and the Psychology of Religion: A Tribute to the Work of Donald Capps.

This article examines Donald Capps's work on the psychology of major religious figures and the social forces that informed their psychic lives, spiritual worldviews, and teachings. Drawing on four texts that were published between 2000 and 2014, the essay explores Capps's views on the importance of psychobiography to the study of religion and the specific contributions his thinking has made to a greater understanding of the historical Jesus. The article considers Capps's analysis of Jesus's illegitimacy and his role as healer within the society in which he lived and preached. Building on Capps's work, the article also expands on feminist and postcolonial theories that offer insight into the psychosocial development of religious figures whose teachings and beliefs emerged out of their individual life circumstances and the larger socio-political culture in which they lived.

Kulturella perspektiv på högutbildades mobilitet

This special issue is based on a panel at the 33rd Ethnology and Folklore Conference in Copenhagen in 2015, and focuses on cultural perspective on international mobility of highly educated employees. The articles’ joint analytical input can be summarized in Russell King’s (2002) phrase “double embeddedness of migration”. Everyday life and people’s narrated experiences are at the heart of the articles, but the focus is also set on the intersection of structural conditions and individual life circumstances. Mobility across national borders contributes with new experiences and knowledge and has different kinds of impact on social status and the individual’s resources acquired by education. This is something the voluntarily mobile have in common with those who are forced to leave their countries of origin. However, there are crucial differences in how highly skilled professionals are received and regarded in the countries they come to, the status they can achieve and the framework within which they can make use of their assets.

Motives that head and neck cancer patients have for contacting a specialist nurse - an empirical study.

The purpose of this study is to systematically explore the motives for patients with head and neck cancer to contact a specialist nurse during two years postdiagnosis. Research focusing on the role of specialist nurses in cancer care almost exclusively concern cancers other than head and neck cancer. Qualitative, descriptive study based on the contacts between patients with head and neck cancer and a specialist nurse. Patients were invited to contact a specialist nurse by telephone. The specialist nurse took systematic field notes, that is, she registered who contacted her, the nature of the call and the outcome. Sixty patients were included. In descending order, the motives for contact were questions about practical and uncomplicated matters, consultations about medical troubles/worries, presenting a report of the patient's situation, requests for additional information about the treatment plan and requests for medical information. The pattern of the patients' motivations for calling was not related to medical or social factors, suggesting that the initiative to make contact is very much a question of the complexity of individual life circumstances. Very few referrals were sent from the specialist nurse to other professionals. The specialist nurse turned out to be more than just a coordinator of health-care resources. The findings bring up questions about the potential of the nurse's function as a coordinator, but also as a potential attachment figure, and questions about the nurse's relationships to other professionals. When implementing a specialist nurse function, it is important to decide whether the function should be inspired by a broader relational perspective. In addition to the indispensible competence and experience in the clinical field of head and neck cancer, training in counselling and acquaintance with object-relational psychology will then be desirable.

Outcomes from personal budgets in mental health: service users’ experiences in three English local authorities

Background: In England, personal budgets are offered to eligible people with severe mental health problems to enable them to purchase what is helpful for their quality of life or recovery. However, in-depth insight into people’s own perceptions of the outcomes is lacking.Aims: To investigate people’s own reporting of outcomes from using personal budgets in relation to social care needs arising from severe mental health problems.Method: A convenience sample of 47 individuals receiving personal budgets was recruited from three English local authorities. In-depth semi-structured interviews were subject to thematic framework analysis.Results: Most participants identified positive outcomes across domains interconnected through individual life circumstances, with mental health and wellbeing, social participation and relationships, and confidence and skills most commonly reported. Some needed more support than others to identify goals and make use of the personal budget to take a more active part in the society.Conclusions: Personal budgets can enable people to achieve outcomes that are relevant to them in the context of their lives, particularly through enhancing their wellbeing and social participation. Consideration should be given to distinguishing those individuals potentially requiring more support for engagement from those who can engage more independently to identify and pursue their goals.

Models of Care for the Management of Hepatitis C Virus Among People Who Inject Drugs: One Size Does Not Fit All

One of the major obstacles to hepatitis C virus (HCV) care in people who inject drugs (PWID) is the lack of treatment settings that are suitably adapted for the needs of this vulnerable population. Nevertheless, HCV treatment has been delivered successfully to PWID through various multidisciplinary models such as community-based clinics, substance abuse treatment clinics, and specialized hospital-based clinics. Models may be integrated in primary care--all under one roof in either addiction care units or general practitioner-based models--or can occur in secondary or tertiary care settings. Additional innovative models include directly observed therapy and peer-based models. A high level of acceptance of the individual life circumstances of PWID rather than rigid exclusion criteria will determine the level of success of any model of HCV management. The impact of highly potent and well-tolerated interferon-free HCV treatment regimens will remain negligible as long as access to therapy cannot be expanded to the most affected risk groups.

Party competence perceptions and the party identification of African Americans

This research examines the effects of party competence perceptions on African–Americans’ party identification. Using ordinary least squares regression to analyse data taken from the 1996 National Black Election Study, I regress African–Americans’ party identification and feeling thermometers for Democrats and Republicans on items that measure African–American assessments of the political parties’ ability to handle certain issues. The results indicate that those matters of race and economics influence party identification. Moreover, party competence perceptions influence partisanship more than party identification. Unlike the literature suggesting that individual factors are not significant, I find that individual life circumstances do influence African–Americans’ party identification.

<em>Madness in the Family: Insanity and Institutions in the Australasian Colonial World, 1860–1914</em>, by Catharine Coleborne

Reviewed by: Madness in the Family: Insanity and Institutions in the Australasian Colonial World, 1860–1914 Sloan Mahone (bio) Madness in the Family: Insanity and Institutions in the Australasian Colonial World, 1860–1914, by Catharine Coleborne; pp. xv + 220. Basingstoke and New York: Palgrave Macmillan, 2010, £55.00, $89.00. Within the thriving sub-field of colonial histories of psychiatry, Catharine Coleborne’s book represents a welcome change. This is true both for the understudied region with which she is concerned and also for the author’s conceptual interest, not in the nature of “madness” per se, but in the often mundane but extreme stresses and strains of families as glimpsed through the records and correspondence of four key asylums in late-nineteenth-century southeastern Australia and New Zealand. The official records of 215 patients reveal a poignant social history of a struggling population (there would have been many like it the world over) coming to grips with isolation, poverty, and overwhelming responsibilities for one’s kith and kin. Coleborne’s archive includes a wealth of letters tucked away within the clinical case files, and these reveal the extent to which family members interacted with these institutions and negotiated their loved ones’ care. The institutions concerned are revealed to be fluid and dynamic spaces as opposed to monolithic bedlams concerned primarily with confining, punishing, or othering the mad. Instead, the book privileges stories of the dire life circumstances of individuals who moved in and out of the asylum as they struggled with exhaustion, poverty, the weight of extended family obligations, isolation, alcoholism, and illness. Although the book’s subtitle lays claim to a history of “insanity and institutions,” this is neither an intellectual history of psychiatry nor an institutional history of the early asylum. Psychiatry is not altogether absent, however. Many individuals are shown to have exhibited signs of clinical insanity or mental strain, as described vividly by their families’ complaints about delusions, violent outbursts, paranoia, or inconsolable depression. However, the author’s approach is to outline thematically the myriad ways in which the staffs of institutions came into contact with families as a means for uncovering the everyday pressures, fears, and guilt families endured. It is often less about the experience of “madness” than about the very ordinary insecurities of daily life in the Australasian colonial world in the late nineteenth century. Refreshingly, the book foregoes a discussion of anachronistic psychiatric diagnoses of so-called lunatics, presenting instead a more interesting social history of gloom and exhaustion. The innovation of the book is to pay close attention, not just to those individuals (often women) committed to the asylum, but also to the significant impact one’s committal might have on husbands, wives, children, and extended family back home. In such a tenuous setting, one person’s mental breakdown could portend an entire family’s demise. The chapters are thematic, opening with a discussion of the colonial asylum and the general debates about insanity as they existed in the Australasian colonies. The second chapter addresses the nature of these debates as expressed within white settler colonies, which, as in eastern and southern Africa, prompted a preoccupation with ideas about race, heredity, and the tenuous state of future generations amidst very uncertain physical, political, and social landscapes. In the third chapter, Coleborne turns her attention to the “Language of Insanity,” focusing on the reality of mental illness or mental breakdown as experienced and described by individuals. Such accounts might mirror institutional concerns and assertions or might sit in stark contrast with doctors’ [End Page 579] understandings of such stress and despair. The next chapters elaborate on primary source material, such as letters from patients and family members in chapter 4 and detailed records of payment in chapter 5, which is surprisingly revealing of the additional pressures, resistance, and accommodations involved in family and institutional negotiations. This brings to the fore questions about family versus state responsibility for the care of the mentally ill, particularly in the absence of a formal state welfare system or poor law. In some cases, the sources reveal detailed maintenance logs kept by asylums, outlining the harsh circumstances under which people lived and the calamities they faced...

Towards A Contextual Turn in Visitor Studies: Evaluating Visitor Segmentation and Identity-Related Motivations

ABSTRACT This article assesses the use of audience segmentation in visitor studies by analyzing its application in the identity model of visitors proposed by J. Falk (2009) and J. Falk et al. (2007). As a leading example of visitor segmentation, the authors examine this model's application in a specific case at U.S. zoos to elaborate some of its limitations. Conventional short-term, episodic approaches to visitor research should be challenged and supplemented by a more contextually sensitive framework. The authors contend that segmentation approaches, and in particular Falk's theorization and operationalization of an identity model of visitors, are problematic. They argue for a contextual turn that places visitors’ experiences within a holistic and long-term framework of individual life circumstances, relationships, and trajectories. Research and theory from education, sociology, and cultural studies extends existing visitor research approaches by acknowledging complexity, change over time, and the interwoven and developmental nature of sociocultural variables influencing visitors’ appropriation of new ideas and experiences.

Workplace injury and nurses: Insights from focus groups with Australian return‐to‐work coordinators

Few studies have examined the return-to-work process for nurses who are injured at work. The purpose of this study was to identify the factors that facilitate or impede the successful return to work of nurses who have sustained a workplace injury from the perspective of return-to-work coordinators. A qualitative, descriptive study was conducted and 25 return-to-work coordinators from 14 different organizations participated in focus group discussions. The participants were recruited from healthcare settings in metropolitan and rural areas of New South Wales, Australia. These included aged-care, residential, and community disability support services, public and private hospitals, and the community health sector. Workforce shortages, individual life circumstances and nurses' work, and nurses' qualifications, specialization, experience, and job tenure were identified as the factors that influence the timely, safe, and sustainable return to work of injured nurses. This study provides insight into how workforce shortages have driven innovative practice in accommodating a nurse's life circumstances when developing the return-to-work plan. Barriers to nurses' return to work included a lack of qualifications, specialization, and the casualization of the workforce.

A comparison of accidental and intentional fatal drug overdoses within the drug death population in Scotland: a case of comortality?

This article considers the social and clinical life circumstances of individuals who succumbed to drug deaths in Scotland in 2003. Specifically, comparisons are made between those who died of accidental and intentional illicit drug overdoses. A cross-linkage process allowed for a comparison of patient notes obtained from general practice, drug treatment services, the Scottish Prison service, the Scottish Criminal Records Office, acute services, non-statutory services and the Procurator Fiscal. Individuals who intentionally overdosed were older, more likely to be females and in a relationship, more likely to be living in their own homes in areas of lower deprivation, to have children and to have sought medical treatment for a psychological condition. They were less likely to have a criminal record or a history of incarceration or substance misuse problems. These findings demonstrate the diversity of the drug death population and may have implications for future prevention policies aimed at individual sub-p...