Service use and access in young children with an intellectual disability or global developmental delay: associations with challenging behaviour

Background Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics. Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use. Results Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour. Conclusion In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour)

The impact of training non-physician clinicians in Malawi on maternal and perinatal mortality : a cluster randomised controlled evaluation of the enhancing training and appropriate technologies for mothers and babies in Africa (ETATMBA) project

Background: Maternal mortality in much of sub-Saharan Africa is very high whereas there has been a steady decline in over the past 60 years in Europe. Perinatal mortality is 12 times higher than maternal mortality accounting for about 7 million neonatal deaths; many of these in sub-Saharan countries. Many of these deaths are preventable. Countries, like Malawi, do not have the resources nor highly trained medical specialists using complex technologies within their healthcare system. Much of the burden falls on healthcare staff other than doctors including non-physician clinicians (NPCs) such as clinical officers, midwives and community health-workers. The aim of this trial is to evaluate a project which is training NPCs as advanced leaders by providing them with skills and knowledge in advanced neonatal and obstetric care. Training that will hopefully be cascaded to their colleagues (other NPCs, midwives, nurses). Methods/design: This is a cluster randomised controlled trial with the unit of randomisation being the 14 districts of central and northern Malawi (one large district was divided into two giving an overall total of 15). Eight districts will be randomly allocated the intervention. Within these eight districts 50 NPCs will be selected and will be enrolled on the training programme (the intervention). Primary outcome will be maternal and perinatal (defined as until discharge from health facility) mortality. Data will be harvested from all facilities in both intervention and control districts for the lifetime of the project (3–4 years) and comparisons made. In addition a process evaluation using both quantitative and qualitative (e.g. interviews) will be undertaken to evaluate the intervention implementation. Discussion: Education and training of NPCs is a key to improving healthcare for mothers and babies in countries like Malawi. Some of the challenges faced are discussed as are the potential limitations. It is hoped that the findings from this trial will lead to a sustainable improvement in healthcare and workforce development and training. Trial registration: ISRCTN6329415

Outcomes from a community speech and language therapy service treatment waiting list: The natural history of 525 children with identified speech and language needs

Background: Understanding the natural history of developmental speech and language impairments can support the selection of children whose difficulties are persistent rather than transitory. It can also provide information against which the effectiveness of intervention can be evaluated. However, natural history data are difficult to collect ethically. Furthermore, as soon as an impairment is identified, the behaviour of those around changes, thus creating some level of intervention. Longitudinal cohort studies, where intervention is minimal, or the control arm of randomized trials have provided the best evidence. However, occasional opportunities arise where service waiting lists can provide data about the progress of children who have not received intervention. This natural history study arose within an ethnically diverse, community paediatric speech and language therapy service in the UK where levels of social disadvantage are high. Aims: To identify (1) the characteristics of the children who attended initial assessment and were selected for treatment; (2) the differences between children who did and did not attend reassessment; and (3) the factors associated with outcomes. Methods & Procedures: A cohort of 545 children were referred and assessed as in need of therapy. Due to resource constraints, intervention was not available for an average of 12 months. Children were invited to attend for a reassessment of need. Initial and follow-up assessments were conducted by experienced clinicians using service guidelines and the Therapy Outcomes Measures Impairment Scale (TOM-I). Descriptive and multivariate regression analyses examined child outcomes for changes in communication impairment, demographic factors and length of wait. Outcomes & Results: At initial assessment, 55% of children presented with severe and profound communication impairments. Children offered appointments at clinics in areas of high social disadvantage were less likely to attend reassessment. By reassessment, 54% of children showed spontaneous improvement (mean TOM-I rating change = 0.58). However, 83% were still judged to require therapy. Approximately 20% of children changed their diagnostic category. Age and impairment severity at initial assessment were the best predictors of continuing requirement for input. Conclusions & Implications: Although children do make spontaneous progress post-assessment and without intervention, it is likely that the majority will continue to be assigned case status by a Speech and Language Therapist. However, when evaluating the effectiveness of interventions, clinicians need to factor in the progress that a proportion of the caseload will make spontaneously. Services should be mindful that a lengthy wait may disproportionately impact children who already face health and educational inequalities. What This Paper Adds: What is already known on the subject Data from longitudinal cohorts (where intervention has been minimal) and the no treatment control arms of randomized controlled trials have provided the best evidence of the natural progression of speech and language impairments in children. These studies provide a varied rate of resolution and progress depending on the case definitions and measurements used. What this study adds to existing knowledge Uniquely, this study has evaluated the natural history of a large cohort of children who had been waiting for treatment for up to 18 months. Data showed that, over a period of waiting for intervention, the majority of those identified as a case by a Speech and Language Therapist remained a case. Using the TOM, on average children in the cohort made just over half a rating point progress during their waiting period. What are the potential or actual clinical implications of this work? The maintenance of treatment waiting lists is probably an unhelpful service strategy for two reasons: first, the case status of the majority of the children is unlikely to change whilst they await intervention and thus children and their families are subjected to further limbo waiting time; second, the dropout from the waiting list may disproportionately affect children who are offered appointments in clinics where there are higher levels of social disadvantage, thus exacerbating inequalities in the system. Currently, a suggested reasonable outcome of intervention is a 0.5 rating change in one domain of TOMs. Study findings suggest this is insufficiently stringent for a paediatric community clinic caseload. There is a need to evaluate spontaneous improvement which may occur in other TOM domains (i.e., Activity, Participation and Wellbeing) and to agree an appropriate change metric for a community paediatric caseload

Outcomes from a community speech and language therapy service treatment waiting list: The natural history of 527 children with identified speech and language needs

Abstract BackgroundUnderstanding the natural history of developmental speech and language impairments can support the selection of children whose difficulties are persistent rather than transitory. It can also provide information against which the effectiveness of intervention can be evaluated. However, natural history data is difficult to collect ethically. Furthermore, as soon as an impairment is identified, the behaviour of those around changes, thus creating some level of intervention. Longitudinal cohort studies, where intervention is minimal, or the control arm of randomised trials have provided the best evidence. However, occasional opportunities arise where service waiting lists can provide data about the progress of children who have not received intervention. This natural history study arose within an ethnically diverse, community paediatric speech and language therapy service in the UK where levels of social disadvantage are high.Aims:To identify (i) characteristics of the children who attended initial assessment and were selected for treatment (ii) differences between children who did and did not attend reassessment (iii) factors associated with outcomes.Methods and ProceduresA cohort of 545 children were referred and assessed as in need of therapy. Due to resource constraints, intervention was not available for an average of 12 months. Children were invited to attend for a reassessment of need. Initial and follow-up assessments were conducted by experienced clinicians using service guidelines and the Therapy Outcomes Measures Impairment Scale (TOM-I). Descriptive and multivariate regression analyses examined child outcomes for changes in communication impairment, demographic factors, and length of wait. Outcomes & ResultsAt initial assessment, 55% of children presented with severe and profound communication impairments. Children offered appointments at clinics in areas of high social disadvantage were less likely to attend reassessment. By reassessment, 54% of children showed spontaneous improvement (mean TOM-I rating change 0.58). However, 83% were still judged to require therapy. Approximately 20% of children changed their diagnostic category. Age and impairment severity at initial assessment were the best predictors of continuing requirement for input. Conclusions and Implications:Although children do make spontaneous progress post-assessment and without intervention, it is likely that the majority will continue to be assigned case status by a Speech and Language Therapist. However, when evaluating the effectiveness of interventions, clinicians need to factor in the progress that a proportion of the caseload will make spontaneously. Services should be mindful that a lengthy wait may disproportionately impact children who already face health and educational inequalities

Up-skilling associate clinicians in Malawi in emergency obstetric, neonatal care and clinical leadership: the ETATMBA cluster randomised controlled trial

Background: The ETATMBA (Enhancing Training And Technology for Mothers and Babies in Africa) project-trained associate clinicians (ACs/clinical officers) as advanced clinical leaders in emergency obstetric and neonatal care. This trial aimed to evaluate the impact of training on obstetric health outcomes in Malawi. Method: A cluster randomised controlled trial with 14 districts of Malawi (8 intervention, 6 control) as units of randomisation. Intervention districts housed the 46 ACs who received the training programme. The primary outcome was district (health facility-based) perinatal mortality rates. Secondary outcomes included maternal mortality ratios, neonatal mortality rate, obstetric and birth variables. The study period was 2011–2013. Mortality rates/ratios were examined using an interrupted time series (ITS) to identify trends over time. Results: The ITS reveals an improving trend in perinatal mortality across both groups, but better in the control group (intervention, effect −3.58, SE 2.65, CI (−9.85 to 2.69), p=0.20; control, effect −17.79, SE 6.83, CI (−33.95 to −1.64), p=0.03). Maternal mortality ratios are seen to have improved in intervention districts while worsening in the control districts (intervention, effect −38.11, SE 50.30, CI (−157.06 to 80.84), p=0.47; control, effect 11.55, SE 87.72, CI (−195.87 to 218.98), p=0.90). There was a 31% drop in neonatal mortality rate in intervention districts while in control districts, the rate rises by 2%. There are no significant differences in the other secondary outcomes. Conclusions: This is one of the first randomised studies looking at the effect of structured training on health outcomes in this setting. Notwithstanding a number of limitations, this study suggests that up-skilling this cadre is possible, and could impact positively on health outcomes

A Comparison of Two Methods for Recruiting Children with an Intellectual Disability

Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are compared between (i) participants being approached in child development centre waiting rooms and (ii), one year later, the same participants being invited to take part by phone, email and/or post. Results: The face‐to‐face recruitment method resulted in a better recruitment rate (58.5% compared to 18.5%) and a larger sample (n = 438) than the telephone/email/post sample (n = 40). It also required less hours of researcher time per completed questionnaire. Conclusions: In‐line with previous research, recruitment of participants with intellectual disabilities (or their parents/carers) requires significant time and resources to get a sample of an acceptable size.Full Tex