Family caregivers’ accounts of caring for a family member with motor neurone disease in Norway: a qualitative study

Background Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. MND care is demanding, complex and involves a variety of care tasks. Family members may experience significant and enduring strain. We conducted a qualitative study to understand more about family caregivers’ work and sense of responsibility, exploring family caregivers’ accounts of caring for a family member with MND. Methods We recruited and interviewed a total of 25 participants from Norway, including 17 current and eight bereaved family caregivers. Drawing on theories of care by Corbin and Strauss, we analysed the data by a theoretical reading of the material to identify different types of care work. Results We found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected: i) immediate care work; ii) seeking information and clarity about the disease; iii) managing competing obligations; iv) maintaining normality; and v) managing external resources and assistance. Caregivers’ priorities were shaped by their interactions with the person with MND, available assistive devices, the development of the illness, and utilisation of paid care. Care work had a symbolic and moral meaning for caregivers, and was associated with self-worth and respect from others. Caregivers tried to balance their own expectations and others’ expectations without being overwhelmed by care work. Conclusions A changing and potentially chaotic situation for family caregivers may compromise their capacity to utilise supportive services. Using the lines of work as a framework to assess caregivers’ preferences and priorities, health professionals may tailor assistance and support to family members caring for persons with MND

Using Human Rights to Hold the US Accountable for its Anti-Sex Trafficking Agenda: The Universal Periodic Review and new directions for US policy

Since the passing of the Trafficking Victims Protection Act of 2000, anti-trafficking efforts have grown in funding, political strength, and popular-culture appeal in the United States and globally. Particularly influential in shaping anti-trafficking policy in the United States are anti-prostitution advocates who are primarily concerned with rehabilitating sex workers and eradicating sexual commerce. Simultaneous to the development of prohibitionist anti-trafficking and anti-prostitution efforts in the US, movements for sex worker rights have also grown in strength and visibility, influencing a variety of cultural, academic, and public health arenas. While sex worker activists have widened the dialogue around sex workers’ rights, thei

Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2–5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome

Human Trafficking Cases in Chile: Challenges for Reducing the Dark Figure

At the global level, human trafficking estimates face a few limitations regarding dark figure. In addressing this type of crime, the Chilean criminal justice system is characterized by a deficient performance both in terms of identification of victims and conviction rates. This concerning situation is largely driven by the operation of several biases and shortcomings that conceal the perpetration of human trafficking acts in Chile. A paradigmatic example of this is the fact that there have been no trafficking cases brought to court in Tarapacá, a trans-border Chilean region with highest proportion of foreign population. Taken together, these facts point to a structural problem associated to processes of globalization and securitization of the border in the context of an institutional culture deeply rooted in a national security doctrine. In this scenario, drawing on a systematic review of the relevant case law in Chile, this article reflects on human trafficking dynamics in the context of a highly securitized border region in Latin America. The focus is on the mechanisms by which these cases are known and processed by the criminal justice system, with special attention to elements with a high potential for estimating the dark figure through the Multiple System Estimation method and for reducing these multiple biases and limitations. From this analysis, critical recommendations are drawn for both law enforcement and border control agencies to reduce this dark figure of human trafficking cases. This paper thereby assumes that situated research is essential to overcome these shortcomings, since it leads to consider the influence of local, historical, and structural factors in the study of this largely invisible criminal phenomenon