Disabilities, Volume 1, Issue 1 (March 2021) – 6 articles

Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability. Full article

There is growing interest, internationally, in empowering people with disabilities, and the United Nations have identified individualised funding as one way in which empowerment might be achieved. ‘Individualised funding’ is an umbrella term for various publicly funded support structures that provide personalised and individualised support services for people with a disability. These aim to facilitate self-direction, empowerment, independence, and self-determination. The findings of a recent mixed-methods systematic review of studies undertaken during an approximate 25-year period suggest positive effects with respect to quality of life, client satisfaction, and safety, as well as very few adverse effects, although the evidence on cost-effectiveness was inconclusive. This paper involved a re-examination of the qualitative findings of that review by employing a realist framework to explore the interplay between key contexts and mechanisms, and how these facilitate or inhibit positive outcomes associated with individualised funding and its underlying programme theory. Full article

The purpose of this paper is to explore issues and concerns related to academic redshirting in kindergarten and to discuss implications of this practice for children with disabilities. Although parents cite a variety of reasons for redshirting their child, only limited evidence of academic or social benefit can be found. A search was conducted to identify studies relevant to academic redshirting and inclusive of children with disabilities published within the past 20 years, and 17 articles were identified related to the topic. From these articles, three central topics emerged: (a) prevalence, predictors, or parent motivations for kindergarten redshirting, (b) the impact of redshirting on academic achievement and post-secondary outcomes, and (c) the impact of this practice on a child’s behavior. While assumptions can be made based on the research conducted using a general education population, the impact of kindergarten redshirting on the success of children with disabilities is unclear due to the limited amount of research that currently exists. Implications for children with disabilities are discussed. Full article

Between 1958 and 1961, the drug Thalidomide was prescribed in the UK as a treatment for morning sickness. It caused severe birth defects. Thalidomide survivors are now experiencing a range of secondary health problems, including depression and anxiety. Internationally, it is estimated that 40% to 50% of Thalidomide survivors have recently experienced common mental health problems. The aim of this study was to gather information about the pattern of symptoms of depression and anxiety amongst UK Thalidomide survivors. A cross-sectional postal survey of 182 UK Thalidomide survivors, which used Patient Health Questionnaire (PHQ-9) and General Anxiety Disorder Scale (GAD-7) to measure self-reported depression and anxiety, was conducted. Data were first analysed using descriptive statistics. A point-biserial correlation was used to examine whether being unable to work was associated with higher depression and anxiety scores. Prevalence of all levels of depression and anxiety was higher amongst the Thalidomide survivors than the general UK population but broadly similar to other groups of adults with disabling conditions. Being unable to work was associated with higher depression and anxiety scores. More research is needed to understand the relationship between early acquired physical disability and depression, in particular the implications, over the life course, of secondary health problems and changing social roles. Full article

Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities. Full article