Influences in the Social Worlds of Children of Mothers with Intellectual Disability

Background Our understanding of childhood for children of mothers with intellectual disability is based on a small number of retrospective accounts which point to some social difficulties, including bullying and stigma. Most research on mothers with intellectual disability and their children has focused on the possibility of developmental delay or abuse and neglect, with little consideration of children’s experiences. The voices of children and their perspective on their lives are missing. The literature suggests that some mothers with intellectual disability experience social isolation, with few friends or family and reliance on formal services for support. However, it is not yet known whether a potentially restricted social context for these mothers influences the social experiences of their children. Children’s social worlds typically expand during middle childhood as they start school, join community activities, play in neighbourhoods and spend time with peers. This study addresses a knowledge gap by exploring the social worlds of home, school, peers and neighbourhood for children of mothers with intellectual disability from their perspective to better understand the influences that shape their lives. Aim and method The study takes a standpoint informed by bioecological theory and the sociology of childhood. Together they provide a framework to explain the interconnected nature of children and their environment, whereby interactions in everyday contexts shape children’s lives in ways they are uniquely positioned to identify. Seven children aged 7 to 11 years took part in semi-structured interviews and activities, such as drawing and photography, to explore their perspectives on everyday life. A narrative approach was employed to analyse children’s stories about what was important in the social worlds of home, school, peers and neighbourhood as this helped to explain how they perceived influences that shaped their social worlds. Findings The narratives of the children suggested that the social world of home influenced social interactions in other settings. When children perceived their home as predictable and secure, they spoke more confidently about exploring social interactions elsewhere. Children identified having support from another significant adult apart from their mother as key to a stable home social world. This person might be a father, family friend or relative, or a formal support worker. Children from homes that lacked predictability and another significant adult were more pessimistic about social interactions and experienced peer difficulties such as bullying. However, children whose homes lacked social support could counteract this by maximising the opportunities afforded at school. Some aspects of their social worlds that these children viewed as important, such as agency and safety, were typical in middle childhood however others, such as protectiveness toward their mother, were not. Significance of the findings The findings highlight that social worlds for children are not inevitably restricted when their mothers have intellectual disability, even when their mother faces restricted social circumstances. The findings challenge an assumption frequently found in the literature that mothers with intellectual disability may provide less than optimal environments for their children and, specifically, for their social worlds in middle childhood

Practices to improve communication between birth parents and permanent families

Background: Support to maintain important family relationships is seen as a right for children in permanent care in Australia. In New South Wales, newly legislated permanency principles prioritise open adoption over long-term foster care and require plans for ongoing, face-to-face (known as direct) birth family contact for children in permanent placements. Countries with similar child welfare systems do not place the same emphasis on contact after permanent removal and it is especially uncommon to see direct contact given priority in open adoption. The problem: There is mixed evidence on the benefits of contact for children in permanent care. The quality of the relationship between birth relatives and caregivers is critical to the success of contact. Casework support is key to promoting understanding and communication between children’s birth parents and permanent carers or adoptive parents. The emerging permanency model in New South Wales does not yet have an evidence base and most caseworkers lack the skills to help these families build a constructive relationship in the interests of ongoing contact for children. The solution: Casework practices developed for use in child welfare placements elsewhere may be successfully applied to New South Wales to help build the practical skills needed to facilitate openness, empathy and respectful interactions. These practices need to be tested and refined to build an evidence base on what works to support ongoing direct contact for children who are permanently removed from parental care

The process of change for people with cognitive impairment in a residential rehabilitation program for substance problems: A phenomenographical analysis

2019 The Author(s). Cognitive impairment is prevalent among people with substance problems and a factor affecting retention in treatment. Empirical phenomenography was used to systematically explore how people with cognitive impairment viewed a novel residential rehabilitation program - Project RE PIN - designed with cognitive compensatory behaviour change activities and from a strengths-based approach. Twelve participants took part in semi-structured interviews and cross-case analysis identified the overarching theme of change. Key program elements were the safe environment, structured routines, modified psycho-educational material and staff support. Critical changes that participants attributed to the program were in dealing with their own and others\u27 emotions, experiencing daily life without drugs or alcohol and reframing their self-view. Fear and anxiety about relapse were common and few participants had strategies or support to cope in the future. This study demonstrates that program activities changed participants\u27 thoughts, feelings and behaviours about themselves and their substance use. The results indicate that RE-PIN\u27s modified content and processes can benefit people with cognitive impairments in treatment. The study highlights that some treatment users may be vulnerable to resumption of drug use despite gains made during a residential program and their desire to remain substance-free

Complexity Embodied: Using Body Mapping to Understand Complex Support Needs

Arts-based methods reduce reliance on verbal communication. This makes them particularly useful for exploring sensitive and controversial topics, which can often be difficult to articulate verbally, and capturing the experiences and insights of marginalised groups including people with complex support needs. The visual arts-based method of body mapping provides an alternative way for participants to express their views and experiences through non-verbal storytelling. In this article, we report on the adaptation of body mapping to conduct research with two disadvantaged groups: adults with cognitive disability and complex support needs; and young people with complex support needs. We identify the potential of the method to promote participants\u27 choice and control over the research process and the onus on researchers to create and maintain a mutually safe and supportive environment. Body mapping is also identified as a useful practical tool for use by individuals and their supporters. Arts-based methods, including body mapping, have the potential to empower people with complex support needs to engage more fully in research, which provides a greater understanding of their experiences, views, and feelings

If we know what works, why aren't we doing it?

High rates of child removal from parents with learning disabilities persist despite substantial evidence that parents with learning disabilities can provide their children with satisfactory care given appropriate support. Child welfare interventions disproportionality based on disability status presents a compelling social issue deserving urgent attention. Co-operative inquiry was used to analyse attitudinal and structural barriers that perpetuate inequitable treatment of parents with learning disabilities and their children, drawing on policy and practice examples from Australia and the United Kingdom. Bacchi’s “What is the problem represented to be?” approach to social policy issues was used to answer the question: if we know what works to support parents with learning disabilities, why aren’t we doing it? This commentary contends that the pervasive representation of parents with learning disabilities as inherently deficient in the requisite skills (‘parenting capacity’) needed for safe caregiving has been difficult to shift due to systematic ableism. Neoliberal policies stigmatise a need for support (‘dependence’) as an individual failing and recast assessments of long-term support needs as an unsustainable burden on support services/systems. We conclude that a social model of child protection that is accessible to all involved returns to principles of interdependence, relationality and ethics of care

If we know what works, why aren't we doing it?

High rates of child removal from parents with learning disabilities persist despite substantial evidence that parents with learning disabilities can provide their children with satisfactory care given appropriate support. Child welfare interventions disproportionality based on disability status presents a compelling social issue deserving urgent attention. Co-operative inquiry was used to analyse attitudinal and structural barriers that perpetuate inequitable treatment of parents with learning disabilities and their children, drawing on policy and practice examples from Australia and the United Kingdom. Bacchi’s “What is the problem represented to be?” approach to social policy issues was used to answer the question: if we know what works to support parents with learning disabilities, why aren’t we doing it? This commentary contends that the pervasive representation of parents with learning disabilities as inherently deficient in the requisite skills (‘parenting capacity’) needed for safe caregiving has been difficult to shift due to systematic ableism. Neoliberal policies stigmatise a need for support (‘dependence’) as an individual failing and recast assessments of long-term support needs as an unsustainable burden on support services/systems. We conclude that a social model of child protection that is accessible to all involved returns to principles of interdependence, relationality and ethics of care

Co-design with people with lived experience : designing resources to communicate with children and young people in care about their family time contact visits

Contact visits, or family time, enable children in out-of-home care to sustain relationships with their birth families. In Australia, direct contact including face-to-face visits is typical for children on long-term orders, including guardianship and open adoption. Caseworkers are charged with supporting relationships between children's birth family members and carers and ensuring contact is safe and child-centred. This article describes how people with lived experience of family time in out-of-home care have collaborated with researchers to co-design practical resources, in the context of an action research study aimed at changing caseworker practice. These resources include a book for young children and a book for older children and adolescents, which both use trauma-informed language and empower their audiences to know their rights and ask for what they need. Additional resources include co-designed tip sheets for family members and carers. People who have personally experienced the care system have unique insights into the experience of family time in out-of-home care and how it can be improved. In partnership, researchers and people with lived experience can identify the gaps in knowledge and practice resources, and co-design resources that integrate lived experience and research findings, underpinned by theory

Cross Sector Service Coordination for People with High and Complex Needs: Harnessing Existing Evidence and Knowledge

People with high and complex needs will generally need an array of supports to enable social and economic participation as envisaged by the National Disability Insurance Scheme (NDIS). As participants, these people will receive funding from the NDIS to purchase services and supports from a range of different disability sector providers, but will also need to access various 'mainstream’ services including health, education, housing, justice and transport in order to pursue the life they choose. The complexity of the services system, and the interfaces between sectors, create gaps and barriers that are challenging for participants, service providers and for policy makers alike to navigate. Cross-sector coordination is a critical scheme design element to ensure that NDIS participants get the range of services and supports they need to pursue their goals and participate in society and the economy. Any failure of other sectors to provide access to quality services will increase the costs of disability support and risk the sustainability of the NDIS. Coordination can thus also be seen as a way of addressing this fundamental risk facing the NDIS. For these reasons cross-sector coordination should be a core element in NDIS design. The disability field is actively discussing these challenges and this paper aims to provide evidence to inform policy directions now being developed.The Centre for Disability Research and Policy at the University of Sydney and the Young People in Nursing Homes National Alliance were partners in a project, supported by the NDIACentre for Disability Research and Polic

Alginate inhibits iron absorption from ferrous gluconate in a randomized controlled trial and reduces iron uptake into Caco-2 cells

Previous in vitro results indicated that alginate beads might be a useful vehicle for food iron fortification. A human study was undertaken to test the hypothesis that alginate enhances iron absorption. A randomised, single blinded, cross-over trial was carried out in which iron absorption was measured from serum iron appearance after a test meal. Overnight-fasted volunteers (n=15) were given a test meal of 200g cola-flavoured jelly plus 21 mg iron as ferrous gluconate, either in alginate beads mixed into the jelly or in a capsule. Iron absorption was lower from the alginate beads than from ferrous gluconate (8.5% and 12.6% respectively, p=0.003). Sub-group B (n=9) consumed the test meals together with 600 mg calcium to determine whether alginate modified the inhibitory effect of calcium. Calcium reduced iron absorption from ferrous gluconate by 51%, from 11.5% to 5.6% (p=0.014), and from alginate beads by 37%, from 8.3% to 5.2% (p=0.009). In vitro studies using Caco-2 cells were designed to explore the reasons for the difference between the previous in vitro findings and the human study; confirmed the inhibitory effect of alginate. Beads similar to those used in the human study were subjected to simulated gastrointestinal digestion, with and without cola jelly, and the digestate applied to Caco-2 cells. Both alginate and cola jelly significantly reduced iron uptake into the cells, by 34% (p=0.009) and 35% (p=0.003) respectively. The combination of cola jelly and calcium produced a very low ferritin response, 16.5% (p<0.001) of that observed with ferrous gluconate alone. The results of these studies demonstrate that alginate beads are not a useful delivery system for soluble salts of iron for the purpose of food fortification

Estimation of Dietary Iron Bioavailability from Food Iron Intake and Iron Status

Currently there are no satisfactory methods for estimating dietary iron absorption (bioavailability) at a population level, but this is essential for deriving dietary reference values using the factorial approach. The aim of this work was to develop a novel approach for estimating dietary iron absorption using a population sample from a sub-section of the UK National Diet and Nutrition Survey (NDNS). Data were analyzed in 873 subjects from the 2000–2001 adult cohort of the NDNS, for whom both dietary intake data and hematological measures (hemoglobin and serum ferritin (SF) concentrations) were available. There were 495 men aged 19–64 y (mean age 42.7±12.1 y) and 378 pre-menopausal women (mean age 35.7±8.2 y). Individual dietary iron requirements were estimated using the Institute of Medicine calculations. A full probability approach was then applied to estimate the prevalence of dietary intakes that were insufficient to meet the needs of the men and women separately, based on their estimated daily iron intake and a series of absorption values ranging from 1–40%. The prevalence of SF concentrations below selected cut-off values (indicating that absorption was not high enough to maintain iron stores) was derived from individual SF concentrations. An estimate of dietary iron absorption required to maintain specified SF values was then calculated by matching the observed prevalence of insufficiency with the prevalence predicted for the series of absorption estimates. Mean daily dietary iron intakes were 13.5 mg for men and 9.8 mg for women. Mean calculated dietary absorption was 8% in men (50th percentile for SF 85 µg/L) and 17% in women (50th percentile for SF 38 µg/L). At a ferritin level of 45 µg/L estimated absorption was similar in men (14%) and women (13%). This new method can be used to calculate dietary iron absorption at a population level using data describing total iron intake and SF concentration