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Background: This paper elucidates a methodological approach to interview text that tries to acknowledge the psychosocial nature of disability and thereby ensuring that empirical work in disability studies complements theoretical arguments already developed.

Objectives: The aim of this study is to outline a psychosocial conceptualisation of maternal subjectivity in relation to childhood disability and to apply this conceptualisation as an analytic tool to segments of an interview with a mother of a child with physical and developmental disabilities.

Method: Drawing on psychoanalysis and attachment literature alongside critical social psychology we take readers through the analysis of an interview extract with a particular mother. Through a fine grained analysis, we demonstrate the value of attending to the affective processes in and around the text rooted in the particular intersubjective exchange (‘here and how’) of the interview and the particular socio-historical context (‘there and then’) in which the mother, child and researcher are located.

Findings: The reading draws attention to discourses that position this particular mother and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions.

Conclusion: This paper demonstrates the value of using multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. This approach enables us to hold onto the complexity and locatedness of maternal subjectivity for mothers of children with disabilities.

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.

Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).

Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

Purpose: The revised version of Developmental Coordination Disorder Questionnaire (DCDQ’07) is a widely used parent-reported screening tool for DCD. The tool is not available in any Indian language. This article reports on the results of the cross-cultural validation of DCDQ’07 into Kannada, a South Indian language.

Methods: The questionnaire was first translated into Indian English to overcome differences in phraseology between Canadian and Indian English (DCDQ’07- IE). Following this, forward translation, synthesis, back translation, expert committee review, and pre-testing of the translated version were conducted to obtain the Kannada version of the questionnaire (DCDQ’07-K). Minor examples, in keeping with local usage, were added. 160 parents were recruited, among whom 80 were parents of children with motor difficulties and 80 were parents of children without motor difficulties. They rated their children on DCDQ’07- IE. After a washout period of 2 weeks, the same parents once again rated their children on DCDQ’07-K.Statistical analysis for reliability, construct validity, and Rasch diagnostics (person and item reliability, fit statistics, category functioning of scores and person-item map) were conducted.

Results: Internal consistency (Cronbach’s Alpha>0.8), parallel form test-retest reliability (ICC=0.95 at 95% CI) and floor and ceiling were acceptable. Principal component analysis (PCA) showed three factors accounting for total variance of 59.29% and 58.80% in DCDQ’07-IE and DCDQ’07-K respectively. Item reliability (<0.8) and separation index (<2) were poor in both versions. Category functioning was effective. Person-item map represented inconsistency in spread of items in difficulty and person’s abilities. Qualitative review of the parents revealed that they were unfamiliar with the performance of their children on sports-related items and hence scored their child on the basis of conjecture.

Conclusion: Translation into Kannada was fairly successful. Although traditional tool properties produced satisfactory results, Rasch analysis demonstrated problems with the tool. This could be due to cultural reasons. Hence DCDQ’07-K should be interpreted with caution when rated by parents in the local context.

An overview of the life situations and locations of the world’s most vulnerable children based on results from the SOS Children’s Villages Programme Monitoring Database is presented. Risk factors are outlined and the percentages of each factors are reported. The Child Vulnerability Index (CVI) is given for a large number of countries

Calls for evaluations in Community Based Rehabilitation (CBR), in particular those of a participatory nature have stepped up in recent years. Much of this shifting discourse has emerged in response to the fact that evaluations overall remain scarce. Furthermore, very little is known about the impacts of CBR in practice and if/how it benefits persons with disabilities and their families on the ground. Nevertheless, and despite the calls for participatory approaches, the few existing efforts are too often targeted at creating standardised evaluations frequently at the expense of voice, participation and flexibility. This paper reports on a series of critical workshops held in Jamaica with CBR workers and other stakeholders, the objectives of which included discussions and reflections on emerging issues in localised, locally driven and responsive participatory evaluation frameworks. The findings highlight how participants favoured a flexible, adaptive and iterative approach that was not rigid, structured or per-determined by outsiders. Instead, they favoured an approach that created a safe space for sharing and learning, prioritised their narratives, and that was directly linked to and that fed directly into action on the ground. The paper concludes with the call for critical, engaged and bottom-up approaches that move away from control-oriented approaches in CBR towards more experimental and adaptive problem and process-oriented approaches, that embrace complexity and that are consistently responsive to an ever changing context.

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

This newsletter contains a variety of articles about inclusive education in several countries around the world. The topics focus mostly on funding, managing and sustaining inclusive education; engaging and empowering beneficiaries in finding solutions; facilitating parental and child involvement and early childhood education

Enabling Education Review, issue 4

This toolkit has been developed as part of an Inclusion International project, Accessing the Ballot Box, funded by the UN Democracy Fund. The project was designed to address the limited political participation of people with intellectual disabilities in Kenya, Zanzibar and Lebanon.

It sought to identify and challenge the barriers people with intellectual disabilities face in exercising their right to civic engagement and political participation and increase the awareness and knowledge of project stakeholders (people with intellectual disabilities, their families and representative organizations, service providers and governments) on building inclusive democratic processes.

This information toolkit is designed to explore how to support people to access the ballot box before during and after elections and to support people with intellectual disabilities and their families, governments and partners to ensure people with intellectual disabilities are able to exercise their right to political participation.

Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI).

Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI.

Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI.

Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. 

Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions.

Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.

Methods: The study used mixed methods. The PedsQLTMFamily Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012.

Results: The mean overall and sub-scale PedsQLTM scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.

Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.