NACBO Research Plan

The National Alliance of Capacity Building Organisations (NACBO) is a national network of six not-for-profit, values-based organisations. The six independent organisations operate on a mix of fee for service and government funding, in most cases operating for many years. More recently, the six NACBO organisations have received funding by the Department of Social Services (DSS) to continue to build the capacity of people with disability and their informal supporters, to enable fuller social and economic participation of people with disabilit

Family involvement in behaviour management following acquired brain injury (ABI) in community settings: A systematic review

This is an Accepted Manuscript of an article published by Taylor & Francis in BRAIN INJURY on 31 March 2015, available online: http://www.tandfonline.com/10.3109/02699052.2015.1004751. This article is under embargo for a period of 12 months from the date of publication.Objectives: To examine family involvement in the management of behavioural problems following ABI in the community. Research Design: Systematic literature review. Methods: Six electronic databases relevant to the field of brain injury were searched between 1980-2013. Citation indexes were used, and references from articles hand searched for further literature. Studies that met the broad inclusion criteria were screened for relevance, and articles selected for full-text review independently considered by two reviewers. Those found to be relevant were analysed using PEDro and McMasters critical appraisal tools. Results: Three hundred and three studies were identified after duplicates were removed and 56 were assessed for relevance, yielding 10 studies for review. Although the majority of studies were weak in design, 5 revealed significant findings supportive of family involvement in the management of behavioural problems following ABI, especially where interventions consisted of both educational components and individualised behavioural plans. Findings revealed no significant changes in family burden following behavioural interventions. Conclusions: There is limited research and lack of high evidence studies evaluating family involvement in behaviour management following ABI; therefore no conclusions can be drawn regarding its efficacy. More research is needed, with larger sample sizes and more rigorous design, including proper comparison groups

The impact of improved maize germplasm on poverty alleviation

"This study documents how poor small-scale farmers in lowland tropical Mexico use improved maize germplasm and how this contributes to their well-being. It does this by assessing both the direct adoption of improved varieties and examining the process of their "creolization." By exposing improved varieties to their conditions and management, continually selecting seed of these varieties for replanting, and in some cases promoting their hybridization with landraces, either by design or by accident, farmers produce what they recognize as "creolized" varieties. Our key hypothesis is that poor farmers benefit from improved germplasm through creolization. Creolization provides farmers with new options, as they deliberately modify an improved technology generated by the formal research system to suit their own circumstances and needs. Different methodologies such as participatory methods, ethnography, household case studies, a household sample survey, and a collection and agronomic evaluation of maize samples were used. This study was carried out in two regions: the coast of Oaxaca and the Frailesca in the states of Oaxaca and Chiapas, two of the poorest in Mexico. While one study area is subsistence-oriented and the other commercial, in both, extreme poverty is pervasive. Maize continues to play a key role in the livelihoods of the poor in both study areas. Authors' AbstractSustainable livelihoods ,plant breeding ,Hybrid maize Mexico ,Agricultural innovations ,

The impact of improved maize germplasm on poverty alleviation

"This study documents how poor small-scale farmers in lowland tropical Mexico use improved maize germplasm and how this contributes to their well-being. It does this by assessing both the direct adoption of improved varieties and examining the process of their "creolization." By exposing improved varieties to their conditions and management, continually selecting seed of these varieties for replanting, and in some cases promoting their hybridization with landraces, either by design or by accident, farmers produce what they recognize as "creolized" varieties. Our key hypothesis is that poor farmers benefit from improved germplasm through creolization. Creolization provides farmers with new options, as they deliberately modify an improved technology generated by the formal research system to suit their own circumstances and needs. Different methodologies such as participatory methods, ethnography, household case studies, a household sample survey, and a collection and agronomic evaluation of maize samples were used. This study was carried out in two regions: the coast of Oaxaca and the Frailesca in the states of Oaxaca and Chiapas, two of the poorest in Mexico. While one study area is subsistence-oriented and the other commercial, in both, extreme poverty is pervasive. Maize continues to play a key role in the livelihoods of the poor in both study areas. Authors' AbstractSustainable livelihoods ,plant breeding ,Hybrid maize Mexico ,Agricultural innovations ,

Persistent frequent attenders in primary care: costs, reasons for attendance, organisation of care and potential for cognitive behavioural therapeutic intervention

<p><b>Abstract</b></p> <p>Background</p> <p>The top 3% of frequent attendance in primary care is associated with 15% of all appointments in primary care, a fivefold increase in hospital expenditure, and more mental disorder and functional somatic symptoms compared to normal attendance. Although often temporary if these rates of attendance last more than two years, they may become persistent (persistent frequent or regular attendance). However, there is no long-term study of the economic impact or clinical characteristics of regular attendance in primary care. Cognitive behaviour formulation and treatment (CBT) for regular attendance as a motivated behaviour may offer an understanding of the development, maintenance and treatment of regular attendance in the context of their health problems, cognitive processes and social context.</p> <p>Methods/design</p> <p>A case control design will compare the clinical characteristics, patterns of health care use and economic costs over the last 10 years of 100 regular attenders (≥30 appointments with general practitioner [GP] over 2 years) with 100 normal attenders (6–22 appointments with GP over 2 years), from purposefully selected primary care practices with differing organisation of care and patient demographics. Qualitative interviews with regular attending patients and practice staff will explore patient barriers, drivers and experiences of consultation, and organisation of care by practices with its challenges. Cognitive behaviour formulation analysed thematically will explore the development, maintenance and therapeutic opportunities for management in regular attenders. The feasibility, acceptability and utility of CBT for regular attendance will be examined.</p> <p>Discussion</p> <p>The health care costs, clinical needs, patient motivation for consultation and organisation of care for persistent frequent or regular attendance in primary care will be explored to develop training and policies for service providers. CBT for regular attendance will be piloted with a view to developing this approach as part of a multifaceted intervention.</p

Peri-operative red blood cell transfusion in neonates and infants: NEonate and Children audiT of Anaesthesia pRactice IN Europe: A prospective European multicentre observational study

BACKGROUND: Little is known about current clinical practice concerning peri-operative red blood cell transfusion in neonates and small infants. Guidelines suggest transfusions based on haemoglobin thresholds ranging from 8.5 to 12 g dl-1, distinguishing between children from birth to day 7 (week 1), from day 8 to day 14 (week 2) or from day 15 (≥week 3) onwards. OBJECTIVE: To observe peri-operative red blood cell transfusion practice according to guidelines in relation to patient outcome. DESIGN: A multicentre observational study. SETTING: The NEonate-Children sTudy of Anaesthesia pRactice IN Europe (NECTARINE) trial recruited patients up to 60 weeks' postmenstrual age undergoing anaesthesia for surgical or diagnostic procedures from 165 centres in 31 European countries between March 2016 and January 2017. PATIENTS: The data included 5609 patients undergoing 6542 procedures. Inclusion criteria was a peri-operative red blood cell transfusion. MAIN OUTCOME MEASURES: The primary endpoint was the haemoglobin level triggering a transfusion for neonates in week 1, week 2 and week 3. Secondary endpoints were transfusion volumes, 'delta haemoglobin' (preprocedure - transfusion-triggering) and 30-day and 90-day morbidity and mortality. RESULTS: Peri-operative red blood cell transfusions were recorded during 447 procedures (6.9%). The median haemoglobin levels triggering a transfusion were 9.6 [IQR 8.7 to 10.9] g dl-1 for neonates in week 1, 9.6 [7.7 to 10.4] g dl-1 in week 2 and 8.0 [7.3 to 9.0] g dl-1 in week 3. The median transfusion volume was 17.1 [11.1 to 26.4] ml kg-1 with a median delta haemoglobin of 1.8 [0.0 to 3.6] g dl-1. Thirty-day morbidity was 47.8% with an overall mortality of 11.3%. CONCLUSIONS: Results indicate lower transfusion-triggering haemoglobin thresholds in clinical practice than suggested by current guidelines. The high morbidity and mortality of this NECTARINE sub-cohort calls for investigative action and evidence-based guidelines addressing peri-operative red blood cell transfusions strategies. TRIAL REGISTRATION: ClinicalTrials.gov, identifier: NCT02350348

Updates in SJS/TEN: collaboration, innovation, and community

Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15–20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1–5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure and coordination to answer questions capable of transforming clinical care and leading to improved patient outcomes. SJS/TEN 2021, the third research meeting of its kind, was held as a virtual meeting on August 28–29, 2021. The meeting brought together 428 international scientists, in addition to a community of 140 SJS/TEN survivors and family members. The goal of the meeting was to brainstorm strategies to support the continued growth of an international SJS/TEN research network, bridging science and the community. The community workshop section of the meeting focused on eight primary themes: mental health, eye care, SJS/TEN in children, non-drug induced SJS/TEN, long-term health complications, new advances in mechanisms and basic science, managing long-term scarring, considerations for skin of color, and COVID-19 vaccines. The meeting featured several important updates and identified areas of unmet research and clinical need that will be highlighted in this white paper