Introduction Although caring for a child with intellectual and developmental disabilities (IDD) can have positive outcomes, parents may be at a greater risk of depression and anxiety, due to a number of associated stressors, such as increased caregiver demands and financial strain. This systematic review updates previous data, exploring the relationship between parenting a child with IDD and parental depression and anxiety. Methods Five electronic databases were searched for eligible English-language articles, published between January 2004 and July 2018. All epidemiological study designs were eligible, provided the level of depression and/or anxiety was compared between parents of children (aged <18) with and without IDD. No limit was placed on geographic location. The proportion of positive associations between parenting a child with IDD and depression/anxiety were disaggregated by disability type, geographic region, and sample size. The percentage of parents at risk of moderate depression or anxiety were calculated using recognised clinical cut-off scores for each screening tool. Meta-analyses, in which pooled effect sizes of elevated depression and anxiety symptoms were calculated, were conducted across two IDD conditions, autism and cerebral palsy. Results Of the 5,839 unique records screened, 19 studies fulfilled the inclusion criteria. The majority of studies were conducted in high-income (n = 8, 42%) or upper-middle income countries (n = 10, 53%). Of the 19 studies, 69% focused on parents of children with cerebral palsy (n = 7, 37%) or autism (n = 6, 32%). Nearly all studies found a positive association between parenting a child with IDD and depression (n = 18, 95%) and anxiety (n = 9, 90%) symptoms. Factors associated with higher levels of depression symptoms amongst parents of children with IDD included disability severity (n = 8, 78%) and lower household income (n = 4, 80%). Approximately one third (31%) of parents of children with IDD reach the clinical cut-off score for moderate depression, compared with 7% of parents of children without IDD. 31% of parents of children with IDD reach the cut-off score for moderate anxiety, compared with 14% of parents of children without IDD. The meta-analyses demonstrated moderate effect sizes for elevated depression amongst parents of children with autism and cerebral palsy. Conclusions Results indicate elevated levels of depressive symptoms amongst parents of children with IDD. Quality concerns amongst the existing literature support the need for further research, especially in low- and middle-income countries.

Due to severe shortages of specialist mental health personnel in low-and middle-income countries (LMICs), psychological therapies are increasingly being delivered by non-specialist health workers (NSHWs). Previous reviews have investigated the effectiveness of NSHW-delivered psychological therapies, including cognitive behavioural therapy (CBT), in LMIC settings. This systematic review aims to synthesise findings on the implementation outcomes of NSHW-delivered CBT interventions addressing common mental disorders and substance-use disorders in LMICs. Four databases were searched, yielding 3211 records, 18 of which met all inclusion criteria. We extracted and synthesised qualitative and quantitative data across eight implementation outcomes: acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration and sustainability. Findings suggest that delivery of CBT-based interventions by NSHWs can be acceptable, appropriate and feasible in LMIC settings. However, more research is needed to better evaluate these and other under-reported implementation outcomes.

BackgroundRefractory disease is defined as not achieving a low disease activity target despite DMARDs. This definition does not account for patients with well controlled inflammation who experience persistent symptoms, or who have a high perceived disease impact. Furthermore, variations in professionals understanding of refractory disease and related concepts exists, with potential discordance when compared to patients understanding.ObjectivesTo qualitatively explore patients and professionals understanding and experiences of refractory disease and persistent symptoms.MethodsSemi-structured interviews were conducted with 13 RA and 3 Polyarticular JIA patients (on bDMARD not responding with DAS28>3.2) attending four UK Rheumatology clinics. Thirty-two healthcare professionals (working in Rheumatology >1year) were interviewed across 11 UK hospitals. Inductive thematic analysis was conducted, with descriptive statistics reported for quantitative data.ResultsPatients had not responded to on average 3 csDMARDs and 3.5 bDMARDs, with mean MSK-HQ=24.6, mean DAS28=4.60, and mean Patient Global=55.4. Healthcare professionals interviewed were predominantly adult trained (25/32), with mean 11.7 years’ experience, comprising rheumatologists, nurses, physiotherapists, occupational therapists, psychologists, pharmacist, podiatrist, and social worker.Key themes for both patients and professionals’ experiences of refractory disease and persistent symptoms explored were: 1) Frustrations with the disease, non-response to medication and side effects, 2) Importance of areas not captured by the DAS28, 3) Patient-centred targets/care, 4) Role of other specialties, 5) Role of comorbidities, infections and/or joint damage, and 6) Patient acceptance, adjustment and resilience. Although patients expressed hopeful expectations despite poor experiences, this was in discordance to professionals’ accounts of loss of trust/hope, disengagement and limited treatment options, with hope mainly for stratified medicines.Patient specific emergent themes identified: 1) Disease not controlled fully but manageable, 2) Drugs do not work: at all versus over time, 3) Persistent pain, fatigue and restricted mobility are most problematic symptoms, 4) Life-limiting impact: practically, psychologically/emotionally and socially, and 5) Good support from rheumatology team but holistic approach needed.Professionals grouped refractory disease into four key areas: 1) Refractory Inflammation vs Refractory Symptomology, 2) Biological processes, 3) Drug inefficacy/tolerability, and 4) Patient health beliefs/behaviours.Those with JIA had a greater variety in their experiences compared to those with RA. In addition to above themes they all highlighted the challenges of having a long-term illness so young, e.g. not knowing a life without pain or disease and lack of understanding in both themselves and others. Paediatric/Adolescent professionals noted differences in treating JIA compared to RA, e.g. joints affected and treatment guidelines/availability not based on DAS equi...