Understanding the psycho-social context for a new early intervention for resistance to change that aims to strike a beneficial balance between structure and flexibility.

BACKGROUND: Emotional and behavioural problems linked to changes to expectations - resistance to change - are linked to disability in neurodevelopmental disorders, including autism spectrum disorder (ASD), Prader-Willi (PWS) and fragile X syndromes (FXS). Structuring routines is best practice for minimising current resistance to change. But complete structure is impractical and flexibility in early life may actually reduce later resistance by supporting cognitive development. We aimed to examine the psycho-social context of families with children at risk of developing resistance to change so as to identify design requirements for an intervention that strikes a beneficial balance between structure and flexibility. METHODS: Thirty-six caregivers of children aged 4-12 years (17 ASD, 15 PWS, and 4 FXS) took part in an interview designed collaboratively with 12 professional stakeholders. RESULTS: Children need to feel like they are in control of flexibility but they also need support in choice making, understanding plans (using individually tailored visuals) and anxiety reduction. Caregivers need an accessible approach that they have full control over, and which they can tailor for their child. Caregivers also need clear guidance, education and support around structure and flexibility. CONCLUSIONS: We propose a digital approach which addresses the needs identified. It tackles the most perplexing challenge by presenting flexibility to children in the context of a game that children can feel they have full control over, whilst caregivers can maintain control in reality. Furthermore, individualised support for children and caregivers would be enabled.

Psychological treatment strategies for challenging behaviours in neurodevelopmental disorders: what lies beyond a purely behavioural approach?

PURPOSE OF REVIEW: Challenging behaviour shown by individuals with neurodevelopmental disorders (NDDs) has a major negative impact. There is robust evidence for the efficacy of treatments based on applied behaviour analysis. However, such approaches are limited in important ways - providing only part of the whole solution. We reviewed the literature to provide an overview of recent progress in psychological treatments for challenging behaviour and how these advance the field beyond a purely behavioural approach. RECENT FINDING: We identified 1029 articles via a systematic search and screened for those implementing a psychological intervention with individuals with NDD (or caregivers) and measuring the potential impact on challenging behaviour. Of the 69 included studies published since 2018, more than 50% implemented a purely behavioural intervention. Other studies could generally be categorized as implementing parent training, meditation, skill training or technology-assisted interventions. SUMMARY: Greater consideration of the interplay between behavioural and nonbehavioural intervention components; systematic approaches to personalization when going beyond the behavioural model; mental health and broad social communication needs; and models that include cognitive and emotional pathways to challenging behaviour; is needed to advance the field. Furthermore, technology should not be overlooked as an important potential facilitator of intervention efforts.

Cancer symptom scale preferences: does one size fit all?

OBJECTIVES: Patients with advanced cancer do not report all symptoms, so assessment is best done systematically. However, for such patients, completion rates of some symptom instruments are <50%. Symptoms can be quantified by various scales including the Categorical Response Scale (CRS), Numerical Rating Scale (NRS) and Visual Analogue Scale (VAS). Patient preferences for CRS, NRS and VAS in symptom assessment and their clinical utility in 3 cancer symptoms: pain, tiredness and appetite loss were determined. METHODS: A prospective survey was conducted involving cancer admissions to a 36-bed palliative care unit. RESULTS: 100 inpatients were recruited, aged 38-93 years (x̅ =71 years; SD=11.6), with median Eastern Cooperative Oncology Group (ECOG) scores of 2 (range 0-4). VAS was the least preferred measure. 52% of patients choose the same scale for all 3 symptoms and 44% for 2, with 4% choosing a different individual scale per symptom. There was moderate agreement between participant scale preference and observer determined ease of scale completion (loss of appetite: κ=0.36; pain: κ=0.49; tiredness: κ=0.45). Participants preferred CRS for appetite loss (48%) and tiredness (40%) and NRS for pain (44%). CONCLUSIONS: VAS was the least favoured scale and should be used cautiously in this population. Most participants had a scale preference with high intrapatient consistency between scales. CRS was preferred for appetite loss and tiredness and NRS for pain. Consideration should be given to individualised cancer symptom assessment according to patient scale preference.

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The 2003 Institute of Medicine (IOM) report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (National Research Council, 2003) provides, through comprehensive reviews, strong evidence of health disparities in healthcare in the USA. In the article entitled 'A life course perspective on how racism may be related to health inequities', the authors cite the IOM study, in addition to numerous other studies that demonstrate racism's contribution to health disparities, and describe a number of approaches that have been adopted in an attempt to at best eliminate, and otherwise at least diminish, these disparities. In this paper the authors propose a new approach to the study of health inequities which uses a life-course structure that can be helpful in future health disparities research. This structure has the potential to create new and more comprehensive solutions. They also provide an extensive literature review of various approaches taken to combat racialised inequality, and these form a foundation on which to base further study.