Caregiving and quality of life

ABSTRACT

The increase in life expectancy for adults with learning disabilities has extended the caring role for their parents. This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life. Data were collected using semi-structured interviews with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings indicate that most parents appraised their quality of life positively and reported benefits, despite the challenges they had to negotiate daily. The benefits from caregiving, more so in later life, were: a connected family from shared caregiving; a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care that improved their quality of life. The challenges that participants regularly encountered were: multiple losses (sleep, career, identity and friends); the added stress of the government’s Personalisation Agenda of caring services; struggles for access to services; searching for a diagnosis; worry about future care and fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities. Caregiving and quality of life are inextricably linked and the difficulties that parents experienced were mainly associated with socio-structural barriers, rather than their children’s disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life over time and how best these parents’ needs can be met. This study makes a specific contribution to understanding the lived realities of older carers and extends current conceptualisations of caregiving and quality of life among older people.     

Victim-warriors and iconic heroines: photographs of female combatants in Aceh,Indonesia

Analyzing photos and narratives of the “widows’ battalion” in Aceh, Indonesia that appeared in international and local print media between 2000 and 2002, this article traces how images of female combatants initially provided evidence of a uniformed, armed ethno-nationalist movement motivated by past state violence and linked to historical legends of women involved in armed resistance to colonialism. Subsequently, the heroines were recast as immoral young women pursuing inappropriate sexual relationships with the occupying military. The problems of intelligence gathering, double agents, and the indeterminate zone of overlap in which male soldiers collaborated in the past were rewritten as a problem of sexual or intimate relations that violated religious and cultural norms. In Aceh, the affective power and complexity of women’s positioning as both victim and combatant is fueled by the invocation of the iconic heroines of the anticolonial resistance and ideas about international human rights. Images and narration of the widows’ battalion appear to champion female combatants past and present, but in fact, contribute to the consolidation of the power of male commanders and combatants in the resistance movement. Analyses of human rights photography must consider the affective power of images beyond engaging the empathy of distant spectators to consider their role in conflict dynamics.     

Organic impurity profiling of fentanyl samples associated with recent clandestine laboratory methods

Nearly a decade ago, fentanyl reappeared in the United States illicit drug market. In the years since, overdose deaths have continued to rise as well as the amount of fentanyl seized by law enforcement agencies. Research surrounding fentanyl production has been beneficial to regulatory actions and understanding illicit fentanyl production. In 2017, the Drug Enforcement Administration (DEA) began collecting seized fentanyl samples from throughout the United States to track purity, adulteration trends, and synthetic impurity profiles for intelligence purposes. The appearance of a specific organic impurity, phenethyl-4-anilino-N-phenethylpiperidine (phenethyl-4-ANPP) indicates a shift in fentanyl production from the traditional Siegfried and Janssen routes to the Gupta-patent route. Through a collaboration between the DEA and the US Army's Combat Capabilities Development Command Chemical Biological Center (DEVCOM CBC), the synthesis of fentanyl was investigated via six synthetic routes, and the impurity profiles were compared to those of seized samples. The synthetic impurity phenethyl-4-ANPP was reliably observed in the Gupta-patent route published in 2013, and its structure was confirmed through isolation and structure elucidation. Organic impurity profiling results for illicit fentanyl samples seized in late 2021 have indicated yet another change in processing with the appearance of the impurity ethyl-4-anilino-N-phenethylpiperidine (ethyl-4-ANPP). Through altering reagents traditionally used in the Gupta-patent route, the formation of this impurity was determined to occur through a modification of the route as originally described in the Gupta patent.     

Norm Diffusion and Reputation: The Rise of the Extractive Industries Transparency Initiative

Transparency in the extractives sector is widely seen as an important tool for improving accountability and deterring corruption. Yet for those very reasons, it is a puzzle that so many governments in corruption‐prone countries have voluntarily signed up to greater scrutiny in this area by joining the Extractive Industries Transparency Initiative (EITI). We argue that EITI serves as a reputational intermediary, whereby reformers can signal good intentions and international actors can reward achievement. International and domestic actors thus utilize EITI to diffuse the norm of resource transparency and to advance reformist aims in a highly problematic policy area.     

Ana Clavel’s “outlaw” desires in Las ninfas a veces sonríen

As a writer whose fiction is known for its transgressive themes and forms, it is no surprise that the Mexican author Ana Clavel has continued to revel in such contraventions in her novella Las ninfas a veces sonríen (2012). In this article I seek to examine how these, also new transgressions, materialize in the novella specifically within a queer framework. The queer showcases Las ninfas’ exploration of “outlaw” sexual desires as well as the fantastical and intertextual genre-bending. By defying heteronormative sexual normalcy, Clavel is seen to challenge certain “givens” within (Mexican) society, whether these be religious, moral, sexual, or cultural, and thus creating a fascinating representation of society’s particular fears, anxieties, and disavowed desires. In the context of the female character’s sexual experiences, transgressive queereness can be understood by making reference to various theories including those of Kristeva’s abjection/uncanny and Creed’s/Braidotti’s monstrous feminine, whereby the female is positioned in terms of an ambiguous oscillation between unthreatening object of male desire, monstrosity, and celebratory female sexual agency. Ultimately by thus delving into outlawed “no-deseos”, Las ninfas can be posited as a prime example of a Barthesian text of “jouissance” which disrupts the reader’s pleasurable reading experience.     

Changing the Domestic Violence Narrative: Aligning Definitions and Standards

Many states use a broad legal definition of domestic violence that includes intimate partner violence along with family violence, and it is from this broader conceptualization that the criminal justice system intervenes and often treats all types of offenders in the same way. This judicial response can include a mandate to attend a Batterer Intervention Program-type group, which does little to address violence that occurs outside of the “traditional” partner violence paradigm. In order to advance interventions for physical partner violence that adequately address both male and female perpetration, as well as the broader conceptualization of domestic violence, we must align definitions and standards among researchers, service providers, advocates, policymakers, and the public health and criminal justice systems. Examples of how this misalignment has stalled progress in offender treatment are discussed and a plan for enabling continued innovation in the field is presented.     

Convenient and Inconvenient Truths in Family Law: Preventing Scholar‐Advocacy Bias in the Use of Social Science Research for Public Policy

This is the second of two articles on the risks of advocacy bias in the reporting of research findings when boundaries are blurred between social science research and advocacy in the pursuit of public policy. In the first article we identify common ways in which social science researchers and reviewers of research—wittingly or unwittingly—can become advocates for ideological positions and social policies at the expense of being balanced reporters of research evidence. The first article discusses the difference between truth in social science and truth in law and identifies a range of scholar‐advocacy strategies that bias research evidence, illustrated by recent debates about overnight parenting of infants and toddlers. In this second article we show how biased research evidence by scholar advocates results in increased confusion and controversy that diminishes the credibility of all parties and stalemates progress in the field, using a case illustration of intimate partner violence in family court. We also show how adherence to scientific methods prevents the misuse of research and suggest a number of collaborative, integrative measures that can help transcend the adversarial stalemate. In a look to the future we consider some unbiased, standardized ways of assessing the strength and generalizability of research evidence.