Meaning in hoarding: perspectives of people who hoard on clutter, culture, and agency

Hoarding has become increasingly prominent in clinical practice and popular culture in recent years, giving rise to extensive research and commentary. Critical responses in the social sciences have criticised the cultural assumptions built in to the construct of ‘hoarding disorder’ and expressed fears that it may generate stigma outweighing its benefits; however, few of these studies have engaged directly with ‘hoarders’ themselves. This paper reports on in-depth, semi-structured interviews with ten individuals living in England, who received assessment and intervention for hoarding from Social Services. Their narratives drew on the cultural repertoire of values and discourses around waste and worth, the mediation of sociality and relationships through material objects, physical constraints on keeping order, and the role played by mental health. Analysing these perspectives anthropologically shows how dominant models of hoarding, such as the DSM-5 paradigm, potentially lend themselves to reductionist understandings that efface the meaning ‘hoarding’ may have and thereby deny agency to the person labelled as ‘hoarder’. More culturally informed analysis, by contrast, affords insights into the complex landscape of value, waste, social critique, emotion, interpersonal relationships and practical difficulties that may underlie hoarding cases, and points the way to more person-centred practice and analysis

Law in social work education: reviewing the evidence on teaching, learning and assessment

This paper presents the findings from a systemic review of knowledge relating to current practice in the teaching, learning and assessment of law in social work education. The research comprised an internationally conducted systematic review of the literature, together with a survey of current education practice in the four countries of the UK. Two consultation events sought the views of a range of stakeholders, including the perspectives of service users and carers. Set in the context of debates about the relationship between law and social work practice, this paper identifies the common themes emerging from the review and offers an analysis of key findings, together with priorities for future directions in education practice

Combining PPI with qualitative research to engage ‘harder-to-reach’ populations: service user groups as co-applicants on a platform study for a trial

Abstract Background: Patient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing. complex intervention trials. Combining both together might enable inclusion of ‘harder-to-reach’ perspectives from the target population(s), particularly when the research is intended for their benefit. However, the interface between PPI and qualitative research has received little attention. Methods: In a multi-disciplinary, mixed methods study to inform the design of incentive trials for smoking cessation in pregnancy and breastfeeding, we combined PPI and qualitative research, with some overlap. Mother and baby groups from two geographically separate disadvantaged areas, with diverse experiences of the smoking and breastfeeding, but no training or previous involvement in research, were recruited as PPI research grant co-applicants. An iterative partnership approach facilitated involvement in research conduct and design across all project phases. Group PPI members were also invited to contribute to more formal qualitative data collection, as and when indicated by the research questions, and emerging analysis. Results: We engaged with ‘harder-to-reach’ women in mother and baby group settings, rather than in academic or home environments. These settings were relaxed and informal, which facilitated rapport-building, disclosures of unexpected information and maintained trust. 21 women participated in standard PPI activities: feedback on study protocols and documents; piloting questionnaires and interview schedules. PPI members voiced some different perspectives from those captured within the qualitative dataset. 19 participated in focused qualitative research. Novel aspects were audio recorded PPI discussions, which contributed qualitative data; first, to interpret systematic review findings and construct intervention vignettes for use in the qualitative research; second, to assist with recruitment to improve sample diversity in the formal qualitative dataset; and third, to translate theory and findings presented in a researcher generated logic model into a lay tool. This had face validity for potential trial participants and used the metaphor of a ladder. Conclusions: Combining and overlapping PPI and qualitative research added ‘harder-to-reach’ contributions, sample diversity, trust and engagement in creative approaches beyond what could be achieved through PPI or qualitative research alone. (350/350

Re-evaluating Adjuvant Breast Cancer Trials: Assessing Hormone Receptor Status by Immunohistochemical Versus Extraction Assays

Background: Tumor levels of steroid hormone receptors, a factor used to select adjuvant treatment for early-stage breast cancer, are currently determined with immunohistochemical assays. These assays have a discordance of 10%-30% with previously used extraction assays. We assessed the concordance and predictive value of hormone receptor status as determined by immunohistochemical and extraction assays on specimens from International Breast Cancer Study Group Trials VIII and IX. These trials predominantly used extraction assays and compared adjuvant chemoendocrine therapy with endocrine therapy alone among pre- and postmenopausal patients with lymph node-negative breast cancer. Trial conclusions were that combination therapy provided a benefit to pre- and postmenopausal patients with estrogen receptor (ER)-negative tumors but not to ER-positive postmenopausal patients. ER-positive premenopausal patients required further study. Methods: Tumor specimens from 571 premenopausal and 976 postmenopausal patients on which extraction assays had determined ER and progesterone receptor (PgR) levels before randomization from October 1, 1988, through October 1, 1999, were re-evaluated with an immunohistochemical assay in a central pathology laboratory. The endpoint was disease-free survival. Hazard ratios of recurrence or death for treatment comparisons were estimated with Cox proportional hazards regression models, and discriminatory ability was evaluated with the c index. All statistical tests were two-sided. Results: Concordance of hormone receptor status determined by both assays ranged from 74% (κ = 0.48) for PgR among postmenopausal patients to 88% (κ = 0.66) for ER in postmenopausal patients. Hazard ratio estimates were similar for the association between disease-free survival and ER status (among all patients) or PgR status (among postmenopausal patients) as determined by the two methods. However, among premenopausal patients treated with endocrine therapy alone, the discriminatory ability of PgR status as determined by immunohistochemical assay was statistically significantly better (c index = 0.60 versus 0.51; P = .003) than that determined by extraction assay, and so immunohistochemically determined PgR status could predict disease-free survival. Conclusions: Trial conclusions in which ER status (for all patients) or PgR status (for postmenopausal patients) was determined by immunohistochemical assay supported those determined by extraction assays. However, among premenopausal patients, trial conclusions drawn from PgR status differed—immunohistochemically determined PgR status could predict response to endocrine therapy, unlike that determined by the extraction assa

Fertility preservation in boys : recent developments and new insights

BACKGROUND: Infertility is an important side effect of treatments used for cancer and other non-malignant conditions in males. This may be due to the loss of spermatogonial stem cells (SSCs) and/or altered functionality of testicular somatic cells (e.g. Sertoli cells, Leydig cells). Whereas sperm cryopreservation is the first-line procedure to preserve fertility in post-pubertal males, this option does not exist for prepubertal boys. For patients unable to produce sperm and at high risk of losing their fertility, testicular tissue freezing is now proposed as an alternative experimental option to safeguard their fertility. OBJECTIVE AND RATIONALE: With this review, we aim to provide an update on clinical practices and experimental methods, as well as to describe patient management inclusion strategies used to preserve and restore the fertility of prepubertal boys at high risk of fertility loss. SEARCH METHODS: Based on the expertise of the participating centres and a literature search of the progress in clinical practices, patient management strategies and experimental methods used to preserve and restore the fertility of prepubertal boys at high risk of fertility loss were identified. In addition, a survey was conducted amongst European and North American centres/networks that have published papers on their testicular tissue banking activity. OUTCOMES: Since the first publication on murine SSC transplantation in 1994, remarkable progress has been made towards clinical application: cryopreservation protocols for testicular tissue have been developed in animal models and are now offered to patients in clinics as a still experimental procedure. Transplantation methods have been adapted for human testis, and the efficiency and safety of the technique are being evaluated in mouse and primate models. However, important practical, medical and ethical issues must be resolved before fertility restoration can be applied in the clinic. Since the previous survey conducted in 2012, the implementation of testicular tissue cryopreservation as a means to preserve the fertility of prepubertal boys has increased. Data have been collected from 24 co-ordinating centres worldwide, which are actively offering testis tissue cryobanking to safeguard the future fertility of boys. More than 1033 young patients (age range 3 months to 18 years) have already undergone testicular tissue retrieval and storage for fertility preservation. LIMITATIONS, REASONS FOR CAUTION: The review does not include the data of all reproductive centres worldwide. Other centres might be offering testicular tissue cryopreservation. Therefore, the numbers might be not representative for the entire field in reproductive medicine and biology worldwide. The key ethical issue regarding fertility preservation in prepubertal boys remains the experimental nature of the intervention. WIDER IMPLICATIONS: The revised procedures can be implemented by the multi-disciplinary teams offering and/or developing treatment strategies to preserve the fertility of prepubertal boys who have a high risk of fertility loss.Peer reviewe

Values associated with public involvement in health and social care research: a narrative review

addresses: Mood Disorders Centre, Psychology, University of Exeter, Exeter, UK.OnlineOpen articleMuch has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.Medical Research Council’s Methodology Research Programm

'A mockery of equality': An exploratory investigation into disabled activists' views of the Paralympic Games

This article offers an exploratory analysis of the opinions of disabled activists towards the Paralympic Games. With the use of a qualitative online survey, the work focuses on the perceptions of disabled individuals (n = 32) who are not Paralympic athletes but are affiliated to the disability rights group, the United Kingdom Disabled People's Council. Working on the premise that the views of disabled activists have been excluded from Paralympic sports discourse to date, the results illustrate a nuanced yet negative view of the Games to contrast with an existing, yet overly positive, academic narrative. Participants were particularly cynical of the portrayal and production of the Games and its Paralympic athletes as they perceived that the wider population of disabled people is misrepresented. The overwhelming perception in this preliminary analysis suggests that the Paralympic Games can be counterproductive to disability rights beyond sport

What do we know the experiences and outcomes of anti-racist social work education? An empirical case study evidencing contested engagement and transformative learning

In social work education there have been very few attempts to empirically capture and measure how professional training programmes prepare students to work with ‘race’ equality and cultural diversity issues. This paper interrogates the experiences and outcomes of anti-racist social work education and evaluates the pedagogic relevance and practice utility of teaching social work students about ‘race’, racism and anti-racism. The data presented in this paper suggests that it is possible to discover the situated experiences of learning about anti-racism and measure how this teaching can affect and lead to knowledge, skills and attitudinal change. The triangulated mixed methods evidence presented in this paper combines nomothetic and idiographic approaches with quantitative data for a matched pair sample of 36 social work students and uses non-parametric statistical tests to measure at two time intervals (before and after teaching); knowledge, skills and attitudinal change. The paper explores how anti-racist social work education enables students to move from ‘magical consciousness ’, where racism and racial oppression is invisible and thereby left unchallenged and maintained, to more critical and reflexive level of awareness where it is named, challenged and no longer shrouded in a culture of professional denial and silencing