The Impact of the Physical Home Environment for Family Carers of People with Dementia: A Qualitative Study

Background: The majority of people with dementia are cared for by their families at home. This study aimed to elicit family carers' perceptions on home environmental aspects and strategies with the view to identify barriers and facilitators when caring for a person with dementia at home.

Design and methods: Thirteen co-resident family carers were engaged in semi-structured in-depth walking interviews. Interviews were recorded, transcribed and analysed using thematic analysis.

Results: Home environments can pose a number of challenges and opportunities. Aspects of the architectural and interior environment (e.g. size, condition, layout and accessibility, familiarity) are perceived as important (Theme 1) as well as a plethora of environmental strategies that encourage independence and comfort at home (Theme 2). Carers' scepticism, timing, costs, property characteristics and mistrust to services are some barriers to implementing environmental strategies (Theme 3).

Conclusions: Carers improvised solutions via trial and error and need further education on strategies to create an enabling and comfortable home environment.     

Parents of Children with Attention Deficit/Hyperactivity Disorder: A Meta-Synthesis,Part II

In 2011 6.4 million children in the United States ages four to 17 years had a diagnosis of ADHD. Quantitative studies have indicated that parenting stress for parents of children diagnosed with ADHD is high. The purpose of the current meta-synthesis was to conduct a comprehensive review of both the published and unpublished qualitative studies involving the experience of parents raising children diagnosed with ADHD. Searches in online scholarly databases yielded an initial 1217 hits, which were narrowed down to eighty studies that met the criteria. A “meta-ethnography” framework was used for the synthesis. Results of the first part of the analysis were reported in Corcoran et al. (2016) and had to do with the personal impact on parents. The themes in Part II have to do with the processes parents go through in accepting the diagnosis of ADHD and in deciding whether their children should take medication. Parents struggled to make sense of their child’s problems and came to terms with the diagnosis in a series of stages. Regarding medication use, parental attitudes varied greatly, with both costs and benefits noted. Though there was considerable ambivalence towards medication use, some parents reported relief after their child began using medication. Implications from this study are that providers should recognize the processes involved in making decisions about an ADHD diagnosis and the use of medication. Social workers should allow sensitive exploration of parents’ attributions and understanding of their children’s behavior and level of acceptance of the diagnosis. Keeping an ethical and critical stance toward the use of medication, social workers should also have full exploration with parents around the potential benefits and risks associated with the treatment of their children’s ADHD, taking into account parents’ preferences.     

Gendered experiences of physical restraint on locked wards for women

Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.     

Short Break and Respite Services for Disabled Children in England: Comparing Children's and Parents' Perspectives of Their Impact on Children

Researchers, health and social care workers often seek to understand the perspectives of children; but gathering views directly from children can present difficulties. Parents are often asked to provide accounts of children's feelings or opinions on the assumption that their proxy reports are accurate and unproblematic. This qualitative thematic analysis of open‐question responses from 352 parents and 73 disabled children examines their accounts of the impact of short break services on disabled children. Participants' perspectives differed; children tended to describe immediate outcomes such as enjoying activities and participation; parents acknowledged these, but focused on longer term developmental outcomes for children.     

Low‐Income Mothers’ Private Safety Nets and Children’s Socioemotional Well‐Being

Using longitudinal data from the Fragile Families and Child Well‐being Study (N = 1,162) and the National Evaluation of Welfare‐to‐Work Strategies (N = 1,308), we estimate associations between material and instrumental support available to low‐income mothers and young children’s socioemotional well‐being. In multivariate OLS models, we find mothers’ available support is negatively associated with children’s behavior problems and positively associated with prosocial behavior in both data sets; associations between available support and children’s internalizing and prosocial behaviors attenuate but remain robust in residualized change models. Overall, results support the hypothesis that the availability of a private safety net is positively associated with children’s socioemotional adjustment.     

Family Therapy for Kids Without Families: Working Systemically With Children and Young People in Residential Care

A significant proportion (4%, Australian Institute of Health and Welfare, 2008) of children and young people in Australia live in some form of residential care, usually in small group‐homes staffed by residential care workers in shifts. However, as Hawkins‐Rodgers (2007) points out, these placements are often not resourced to heal the effects of trauma and multiple attachment disruptions in their residents. The lack of an archetypal ‘family’ has led in the past to family therapists considering that there is little work to be done with such clients. This leaves such placements to be supported most frequently by clinicians who specialise in behaviour management and other linearly founded models of practice. The Alternate Care Clinic (ACC) is the first mental health service in New South Wales dedicated entirely to children and young people in out of home care with a high level of complex needs. This article examines the systemic therapeutic model the clinic has developed in the last two years. In particular, the article seeks to explore the importance of ‘meaning making’ in a diffuse parental system, particularly with regards to the term ‘family’. The complexities of working in this area and possible ways forward are illustrated with a closely worked case study.     

A computationally simple bivariate survival estimator for efficacy and safety

Both treatment efficacy and safety are typically the primary endpoints in Phase II, and even in some Phase III, clinical trials. Efficacy is frequently measured by time to response, death, or some other milestone event and thus is a continuous, possibly censored, outcome. Safety, however, is frequently measured on a discrete scale; in Eastern Cooperative Oncology Group clinical trial E2290, it was measured as the number of weekly rounds of chemotherapy that were tolerable to colorectal cancer patients. For the joint analysis of efficacy and safety, we propose a non-parametric, computationally simple estimator for the bivariate survival function when one time-to-event is continuous, one is discrete, and both are subject to right-censoring. The bivariate censoring times may depend on each other, but they are assumed to be independent of both event times. We derive a closed-form covariance estimator for the survivor function which allows for inference to be based on any of several possible statistics of interest. In addition, we derive its covariance with respect to calendar time of analysis, allowing for its use in sequential studies.     

Effects of unmeasured heterogeneity in the linear transformation model for censored data

We investigate the effect of unobserved heterogeneity in the context of the linear transformation model for censored survival data in the clinical trials setting. The unobserved heterogeneity is represented by a frailty term, with unknown distribution, in the linear transformation model. The bias of the estimate under the assumption of no unobserved heterogeneity when it truly is present is obtained. We also derive the asymptotic relative efficiency of the estimate of treatment effect under the incorrect assumption of no unobserved heterogeneity. Additionally we investigate the loss of power for clinical trials that are designed assuming the model without frailty when, in fact, the model with frailty is true. Numerical studies under a proportional odds model show that the loss of efficiency and the loss of power can be substantial when the heterogeneity, as embodied by a frailty, is ignored. An erratum to this article can be found at     

The deprivation experienced by disabled asylum seekers in the United Kingdom: symptoms,causes, and possible solutions

Disabled asylum seekers have been found to often experience extreme deprivation. Possible causes and solutions are explored, drawing on the experiences of disabled asylum seekers themselves as well as on a series of interviews with people working in the asylum and immigration sector. It is suggested that action is required to reduce immediate suffering, but that systemic change is needed to address the causes of this deprivation.     

Powerblindness

In the land of the blind, the one‐eyed man may be king. But positions of power may produce their own forms of blindness. This paper reviews multiple theoretical approaches to the concept of powerblindness and categorizes these literatures into five forms through which powerblindness operates: powerblind identity (failure to notice that one belongs to a privileged group), powerblind egalitarianism (belief that all groups are equal in power), powerblind hierarchy (emphasis on one's own subordinate position), powerblind exception (the claim that one is less privileged than others in one's group), and powerblind justification (belief that present‐day hierarchy is merited or inevitable). The paper identifies studies offering evidence for each, drawing on social‐psychological experiments, survey data, and qualitative research, suggesting that power and knowledge do not necessarily go hand in hand – some forms of knowledge about the social order may be more visible to people with less power than to people with more.