The (radical) role of belonging in shifting and expanding understandings of social inclusion for people labelled with intellectual and developmental disabilities.

There is a gap between the desired outcomes of social inclusion policy and the everyday experiences of people labelled with intellectual and developmental disabilities. Despite belonging rhetorically named in social inclusion policy and practice, belonging is often absent in the lives of people labelled with intellectual and developmental disabilities and remains undertheorised in its relationship to social inclusion. In this paper, we explore the role belonging might play in narrowing the gap between how social inclusion is theorised and how it is experienced. Drawing on critical disability and feminist relational theories, we outline a relational conceptualisation of belonging and use it to 'crip' the construct of social inclusion. Exploring the synergies and tensions that surface when social inclusion and belonging are held together as discrete but interconnected constructs, we name four conceptual shifts and expansions that allow us to see social inclusion differently. Through the centring of the experiences of people labelled with intellectual and developmental disabilities, we explore the ways belonging can help to reimagine inclusion from assimilationist, static, objective and formal towards inclusion as fluid, negotiated, (inter)subjective, (in)formal and intimate.

Coronavirus Disease 2019: Considerations for Health Technology Assessment From the National Centre for Pharmacoeconomics Review Group.

It is expected that the coronavirus disease 2019 (COVID-19) pandemic will leave large deficits in the budgets of many jurisdictions. Funding for other treatments, in particular new treatments, may become more constrained than previously expected. Therefore, a robust health technology assessment (HTA) system is vital. Many clinical trials carried out during the pandemic may have been temporarily halted, while others may have had to change their protocols. Even trials that continue as normal may experience external changes as other aspects of the healthcare service may not be available to the patients in the trial, or the patients themselves may contract COVID-19. Consequently, many limitations are likely to arise in the provision of robust HTAs, which could have profound consequences on the availability of new treatments. Therefore, the National Centre for Pharmacoeconomics Review Group wishes to discuss these issues and make recommendations for applicants submitting to HTA agencies, in ample time for these HTAs to be prepared and assessed. We discuss how the pandemic may affect the estimation of the treatment effect, costs, life-years, utilities, discontinuation rates, and methods of evidence synthesis and extrapolation. In particular, we note that trials conducted during the pandemic will be subject to a higher degree of uncertainty than before. It is vital that applicants clearly identify any parameters that may be affected by the pandemic. These parameters will require considerably more scenario and sensitivity analyses to account for this increase in uncertainty.

Love and resistance of mothers with intellectual disability from ethnocultural communities in Canada.

BACKGROUND: Mothers with intellectual disability are thought to be passive, dependent and in need of protection. This study contributes to a nascent body of research that challenges this schema, revealing how women with intellectual disability who are mothers resist oppression. METHODS: Narrative research methods underpinned by intersectionality theory were used to explore the lives of eight mothers with intellectual disability from various ethnocultural communities in Canada. A total of 33 in-depth interviews were conducted with these eight women over a period of 2 years. RESULTS: The lives of the women who took part in this study were marked by violence. The women resisted. Their resistance strategies addressed two kinds of relationships: their relationships with others and their relationship with themselves. CONCLUSION: The women in this study employed strategies of resistance, sometimes at great personal cost, to provide their children with a better life.

The experience of adult children of mothers with intellectual disability: A qualitative retrospective study from Poland.

BACKGROUND: Little is known about the experience of growing up with a mother with intellectual disability. The aim of this study was to explore this experience from the perspective of adult children. METHOD: In-depth interviews with 23 adult children brought up by mothers with moderate-to-severe intellectual disability. The interview data were analysed using grounded theory methods. RESULTS: The childhood experiences of the interviewees and the role their mothers played in their upbringing varied, depending in part on the involvement of extended family. It was the stigma of maternal intellectual disability, rather than their mother's functional limitations, that posed the greatest challenge. CONCLUSION: Interviewees characterized their mothers and childhoods as different, yet ordinary. Understanding the social context, including but not limited to the availability of informal support, is critical to understanding the experience of children growing up with mothers with intellectual disability.

Suicidal Ideation Among Adults with Disability in Western Canada: A Brief Report.

This study investigated prevalence and risk factors for suicidal ideation among adults with self-reported disability in Western Canada. The method was secondary data analysis utilising the Canadian Community Health Survey. The odds of 12-month suicidal ideation are 3.5 times greater for adults with self-reported disability compared with non-disabled adults, controlling for age, sex, ethnicity, and psychiatric morbidity. The heightened risk of ideation among adults with self-reported disability is partially explained by social adversity, including food insecurity and low sense of community belonging. Reducing suicide risk among adults with disability requires a broad-spectrum approach, including mental health care, and strategies to ameliorate social and economic hardship.

Ameliorating Psychosocial Risk Among Mothers with Intellectual Impairment.

The purpose of this study was to pilot a flexible, group-based program designed to strengthen the social connections and enhance the psychological well-being of mothers with intellectual impairment. A multi-site, mixed-method, pretest-posttest design was employed. To obtain rich process and outcome data, the evaluation incorporated measures of psychosocial well-being, goal achievement scaling, and interviews with group facilitators and participants. A total of 18 mothers completed the program. Participation was associated with a meaningful reduction in psychological distress with effect sizes ranging from .57 for depression to .71 for anxiety. Participating in the group program gave the mothers something to look forward to each week, opportunities to learn from and support others, and the feeling of "being a part of society". Further research is needed to determine whether these promising results can be replicated, and to evaluate the long-term impact of the program on mothers and their children.

The impact of autism services on mothers' occupational balance and participation.

This mixed-methods study examined the impact of professional services on employment and leisure participation of mothers of children with autism. In Phase 1, 139 mothers with a child with autism completed a comprehensive survey addressing their experiences with services and occupational participation. In Phase 2, in-depth interviews, informed by grounded theory methodology, were conducted with a sub-sample of 19 mothers to discuss their experiences with services and the relationship between services, employment, and leisure participation. Findings revealed that discontinuity of services was a significant predictor of disrupted employment and/or leisure. A process of occupational imbalance and sacrifice emerged related to mothers' foregoing participation in personally meaningful occupations to focus time on navigating and participating in professional services for their child. Our findings suggest that many professionals who work with individuals with autism conceptually value family-centered care; yet, actual services often ignore family issues and focus exclusively on the child.

Systematic Review of Economic Evaluations of Systemic Treatments for Advanced and Metastatic Gastric Cancer.

BACKGROUND: Recent advances in the development of biomarker-directed therapy and immunotherapy, for advanced and metastatic gastric cancers, have the potential to improve survival and quality of life. Much attention has been directed towards second- and later-line treatments, and the landscape here is evolving rapidly. However, uncertainty in relative effectiveness, high costs and uncertainty in cost effectiveness represent challenges for decision makers. OBJECTIVE: To identify economic evaluations for the second-line or later-line treatment of advanced and metastatic gastric cancer. Also, to assess key criteria (including model assumptions, inputs and outcomes), reporting completeness and methodological quality to inform future cost-effectiveness evaluations. METHODS: A systematic literature search (from database inception to 5 March 2023) of EconLit via EBSCOhost, Cochrane Library (restricted to National Health Service [NHS] Economic Evaluation Database and Health Technology Assessment [HTA] Database), Embase, MEDLINE and of grey literature was conducted. This aimed to identify systemic treatments that align with National Comprehensive Cancer Network (NCCN) and European Society for Medical Oncology (ESMO) Clinical Practice Guidelines. Data were collected on key criteria and on reporting completeness and methodological quality. A narrative synthesis focussed on cost-effectiveness and cost-of-illness studies. Outcomes of interest included total and incremental costs and outcomes (life-years and quality-adjusted life-years), ratios of incremental costs per unit outcome and other summary cost and outcome measures. Also, for cost-effectiveness studies, reporting completeness and the methodological quality were assessed using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) and the Philips Checklist, respectively. RESULTS: A total of 19 eligible economic evaluations were identified (cost-effectiveness studies [n = 15] and cost-of-illness studies [n = 4]). There was a general lack of consistency in the methodological approaches taken across studies. In the main, the cost-effectiveness studies indicated that the intervention under consideration was more effective and more costly than the comparator(s). However, most interventions were not cost effective. No studies were fully compliant with reporting-completeness and methodological-quality requirements. Given the lack of consistency in the approaches taken across cost-of-illness studies, outcomes could not be directly compared. CONCLUSIONS: To our knowledge, this is the first published systematic literature review that has qualitatively synthesised economic evaluations for advanced and metastatic gastric cancer. There were differences in the approaches taken across the cost-effectiveness studies and the cost-of-illness studies. The conclusions of most of the cost-effectiveness studies were consistent despite identified differences in approaches. In the main, the interventions under consideration were not cost effective, presenting challenges to sustainability and affordability. We highlight a requirement for cost-effectiveness evaluations and for second-line or later-line treatments of advanced and metastatic gastric cancer that consider all relevant comparators and that are compliant with reporting-completeness and methodological-quality requirements. By addressing the methodological gaps identified here, future healthcare decision-making, within the context of this rapidly changing treatment landscape, would be better informed. PROSPERO REGISTRATION NUMBER: CRD42023405951.

Child welfare involvement of mothers with mental health issues.

Many mothers with mental health issues are caught up in the child protection system and face the prospect of having their children removed from their care. The aim of this study was to determine prevalence and outcomes for mothers with mental health issues and their children in child maltreatment cases opened for investigation in Canada. The method was secondary analysis of the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2003) core data. This CIS-2003 contains process and outcome data on a nationally representative sample of 11,652 child maltreatment investigations. Maternal mental health issues were noted in 2,272 (19.7%) cases opened for investigation. The most common child protection concerns were neglect, emotional maltreatment and exposure to domestic violence. A significant association was found between maternal mental health issues and child maltreatment investigation outcomes, with many potentially confounding variables held constant. Broad spectrum, multi-disciplinary services are needed to support mothers with mental health issues. Effective mental health care is vital but insufficient. Addressing trauma, strengthening social relationships and alleviating poverty are also key. Systemic advocacy is needed to ensure that mothers with mental health issues can access broad spectrum supports.

The devolution of eugenic practices: Sexual and reproductive health and oppression of people with intellectual disability.

Early 20th century eugenicists propagated a system of ideas, values and dispositions that constituted adults with intellectual disability as the antithesis of the paradigmatic citizen, and a biological threat to society. The eugenic schema was encoded in sex-segregated institutionalization and, in many places, forced sterilization. These eugenic practices are no longer sanctioned. However, eugenic practices did not disappear. In this paper we argue that the eugenic schema is now encoded and purveyed through a multiplicity of social arrangements and practices that deny adults with intellectual disability the respect, opportunity and means necessary to participate on a par with others in social life. Such practices include, for example, covert or coerced contraception, and discriminatory child welfare interventions leading to high rates of custody deprivation. Drawing on relational theory, we problematize normative assumptions of embodiment and citizenship, which give rise to attributions of incapacity, and argue that adults with intellectual disability need what all other adults need to make and effect choices concerning their sexuality, relationships and parenthood, i.e., recognition, opportunity and support.

Intimate partner violence against women with intellectual disability: A relational framework for inclusive, trauma-informed social services.

Women with intellectual disability experience intimate partner violence at higher rates and tend to remain in abusive relationships longer than non-disabled women. The purpose of this inquiry was to generate a preliminary set of principles and delineate domains of support as a general guide for social service workers supporting women with intellectual disability through the difficult, often stop-start process of ending an abusive relationship and creating a desired future. Taking a pragmatic inquiry approach, guiding principles and domains of support were generated through a triangulated engagement with relational theory, relevant published research, and original data gathered through interviews with five experienced social service workers. The results comprise a relational framework for inclusive, trauma-informed services aimed at fostering the relational autonomy of women with intellectual disability. Enacting relational principles of reflexivity, recognition, solidarity and safety, social service workers can support women with intellectual disability with safety planning, securing basic life needs, strengthening social relationships, acquiring new skills and nurturing self-affective attitudes of self-respect, self-efficacy and self-esteem.

Improving services for parents with intellectual disability and their families: Views of Canadian social service workers.

How adults with intellectual disability fare in the parenting role depend, to varying degrees, on the adequacy of supports and services provided. The available research suggests that service providers are often ill-equipped to accommodate their support needs. The purpose of this qualitative descriptive study was to explore the perspectives of Canadian social service workers on what is required to improve services and build systems capacity to more effectively support parents with intellectual disability, their children and families. A total of 39 workers, identified by parents with intellectual disability as their key workers, were interviewed. To build systems capacity to support these parents and families, and to address institutionalised discrimination, key workers highlighted the need for entry-to-practice and continuing professional education to develop worker capabilities for reflective practice, relationship-building and research utilisation; accommodative caseload management, giving workers the time, flexibility and the professional supervision they need to deal with complexity and fashion individualised service responses; and, a common framework, with defined service pathways, to facilitate interagency case planning and, in turn, continuity in service provision. The question is not whether adults with intellectual disability can be effectively supported in the parenting role; the question is whether the political will exists to do what is necessary to ensure they are.

Reasonable Efforts? Child Maltreatment Investigations and Service Referrals of Parents With Ascribed Cognitive Impairments in Canada.

Parents with ascribed cognitive impairment (CI) are more likely than parents without CI to have their children removed by child protective services (CPS). Inequitable access to parenting and family supports and services is thought to be a contributing factor. Utilizing data on a 3-month sample of 15,980 child maltreatment investigations across Canada, including 1,244 cases featuring parents with CI, this study investigated service referrals and non-referrals. The results of this secondary data analysis suggest that, relative to need, parents with CI are less likely to be referred for matched services, including home based\reunification services post child removal. It is unclear whether disparate rates of referral are driven by a lack of inclusive services, and/or the conflation of parental CI with perceived parenting deficits. When perceived parenting deficits are attributed to parental CI, CPS may wrongly assume that these are irremediable. The findings highlight the need for building inter-sectoral service pathways in order to render appropriate assistance to parents with CI in the performance of their childrearing responsibilities.

Comparative effectiveness of neutralising monoclonal antibodies in high risk COVID-19 patients: a Bayesian network meta-analysis.

The purpose of this work was to review and synthesise the evidence on the comparative effectiveness of neutralising monoclonal antibody (nMAB) therapies in individuals exposed to or infected with SARS-CoV-2 and at high risk of developing severe COVID-19. Outcomes of interest were mortality, healthcare utilisation, and safety. A rapid systematic review was undertaken to identify and synthesise relevant RCT evidence using a Bayesian Network Meta-Analysis. Relative treatment effects for individual nMABs (compared with placebo and one another) were estimated. Pooled effects for the nMAB class compared with placebo were estimated. Relative effects were combined with baseline natural history models to predict the expected risk reductions per 1000 patients treated. Eight articles investigating four nMABs (bamlanivimab, bamlanivimab/etesevimab, casirivimab/imdevimab, sotrovimab) were identified. All four therapies were associated with a statistically significant reduction in hospitalisation (70-80% reduction in relative risk; absolute reduction of 35-40 hospitalisations per 1000 patients). For mortality, ICU admission, and invasive ventilation, the risk was lower for all nMABs compared with placebo with moderate to high uncertainty due to small event numbers. Rates of serious AEs and infusion reactions were comparable between nMABs and placebo. Pairwise comparisons between nMABs were typically uncertain, with broadly comparable efficacy. In conclusion, nMABs are effective at reducing hospitalisation among infected individuals at high-risk of severe COVID-19, and are likely to reduce mortality, ICU admission, and invasive ventilation rates; the effect on these latter outcomes is more uncertain. Widespread vaccination and the emergence of nMAB-resistant variants make the generalisability of these results to current patient populations difficult.

Integrating Triple P into existing family support services: a case study on program implementation.

The purpose of this paper is to present a case study of "evidence-based" program uptake and implementation. The process of integrating Triple P (levels 2 and 3) into existing family support centers in Alberta, Canada, was examined. We conducted ten individual interviews with directors, and ten group interviews, involving a total of 62 practitioners across ten Triple P pilot sites. Key findings show that there was variability in the approach and extent to which Triple P was integrated into family support centers. Five key factors impacting the integration process emerged from the interviews. These were: (1) the level of development of pre-existing support services; (2) the degree of "fit" between the Triple P program approach and existing agency practice, including the perceived suitability/unsuitability for some client groups; (3) practitioner perceptions of the adaptability of the program; (4) rules about who can and who cannot use Triple P resources; and (5) training and sustainability issues. In addition to identifying specific factors, this study was able to provide some insight as to why and how these factors were significant, thereby adding to the literature on knowledge/program dissemination processes.

Child Maltreatment Investigations in Canada: Main and Moderating Effects of Primary Caregiver Cognitive Impairment.

Children of parents with cognitive impairment are overrepresented in the child protection system (CPS). The aim of this study was to examine the relationship between primary caregiver cognitive impairment (CCI) and CPS investigation outcomes using the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2008). The CIS-2008 includes process and outcomes data on a national sample of CPS investigations involving a total of 15,980 children under the age of 16 years. This secondary data analysis found that primary CCI was noted in 6.3% of all investigations. When primary CCI was noted, investigations were 3-4 times more likely to result in child removal and court action. The results further suggest that some case characteristics, including case history variables, are weighted differently in decision making depending on whether or not primary CCI is indicated. A systematic, national strategy is needed to build capacity in government and community sectors for the provision of research-informed child and youth protection and family support services for these parents and their children.

Understanding the Challenges and Uncertainties of Seroprevalence Studies for SARS-CoV-2.

SARS-CoV-2 continues to widely circulate in populations globally. Underdetection is acknowledged and is problematic when attempting to capture the true prevalence. Seroprevalence studies, where blood samples from a population sample are tested for SARS-CoV-2 antibodies that react to the SARS-CoV-2 virus, are a common method for estimating the proportion of people previously infected with the virus in a given population. However, obtaining reliable estimates from seroprevalence studies is challenging for a number of reasons, and the uncertainty in the results is often overlooked by scientists, policy makers, and the media. This paper reviews the methodological issues that arise in designing these studies, and the main sources of uncertainty that affect the results. We discuss the choice of study population, recruitment of subjects, uncertainty surrounding the accuracy of antibody tests, and the relationship between antibodies and infection over time. Understanding these issues can help the reader to interpret and critically evaluate the results of seroprevalence studies.

Transition to independent accommodation for adults with schizophrenia.

OBJECTIVE: The aim of this exploratory study was to investigate the process of transition to independent accommodation for people with schizophrenia. METHOD: The study employed a grounded theory approach. Multiple semi-structured and responsive e-mails and interviews were conducted with a total of seven participants currently living in independent accommodation. Through constant-comparative analysis of interview and e-mail data, three central processes were identified. RESULTS: The three processes are developing a sense of control; establishing a relationship between illness and place; and attaining a sense of belonging. CONCLUSION: By attending to each of these three processes, mental health professionals may better assist people with schizophrenia to make a successful transition to independent accommodation, and in turn, to living well in the community.

Family caregivers' perceptions of hospital-based allied health services post-stroke: use of the Measure of Processes of Care to investigate processes of care.

AIM: To investigate family caregiver perceptions of allied health professional processes of care and support in hospital following stroke, and to test an adapted version of the Measure of Processes of Care (MPOC) for its suitability of use in the stroke care setting. METHODS: The first stage involved the adaptation and refinement of the MPOC, designed to measure caregiver perceptions of processes of professional care and support across five care dimensions. The second stage involved mailing out of questionnaires to primary caregivers of stroke survivors. A total of 107 completed questionnaires were included in the analysis. The reliability of the adapted questionnaire was assessed and summary statistics were computed. RESULTS: The reliability of the adapted MPOC was found to be high, with good internal consistency of items within each subscale. Mean scores indicated that caregivers were most likely to report negative perceptions of the way allied health professionals engaged with and supported them, particularly in the area of information provision. CONCLUSION: The number of families being affected by stroke is predicted to rise substantially in the near future. Allied health professionals have a significant role to play in supporting family caregivers. Results highlight caregiver-identified areas of weakness in current clinical practice.