'Staying strong on the inside and outside' to keep walking and moving around: perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia

Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia's Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where similar to 1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants' preferred language(s). Participants described their experience of living with MJD, from 'knowing about MJD', 'protecting yourself from MJD' and 'adjusting to life with MJD'. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. 'Staying strong on the inside and outside' (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: 'Exercising your body', 'having something important to do', 'keeping yourself happy', 'searching for good medicine', 'families helping each other' and 'going country'. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care

Weighing the Solar Axion

Axion helioscopes search for solar axions and axion-like particles via inverse Primakoff conversion in strong laboratory magnets pointed at the Sun. While helioscopes can always measure the axion coupling to photons, the conversion signal is independent of the mass for axions lighter than around 0.02 eV. Masses above this value on the other hand have suppressed signals due to axion-photon oscillations which destroy the coherence of the conversion along the magnet. However, the spectral oscillations present in the axion conversion signal between these two regimes are highly dependent on the axion mass. We show that these oscillations are observable given realistic energy resolutions and can be used to determine the axion mass to within percent level accuracies. Using projections for the upcoming helioscope IAXO, we demonstrate that $>3\sigma$ sensitivity to a non-zero axion mass is possible between $3 \times 10^{-3}$ and $10^{-1}$ eV for both the Primakoff and axion-electron solar fluxes.Comment: 13 pages, 7 figures, matches published version, code available at http://cajohare.github.io/IAXOmas

Glastir Monitoring & Evaluation Programme. First year annual report

The Welsh Government has commissioned a comprehensive new ecosystem monitoring and evaluation programme to monitor the effects of Glastir, its new land management scheme, and to monitor progress towards a range of international biodiversity and environmental targets. A random sample of 1 km squares stratified by landcover types will be used both to monitor change at a national level in the wider countryside and to provide a backdrop against which intervention measures are assessed using a second sample of 1 km squares located in areas eligible for enhanced payments for advanced interventions. Modelling in the first year has forecast change based on current understanding, whilst a rolling national monitoring programme based on an ecosystem approach will provide an evidence-base for on-going, adaptive development of the scheme by Welsh Government. To our knowledge, this will constitute the largest and most in-depth ecosystem monitoring and evaluation programme of any member state of the European Union

Mental health social work in Northern Ireland and the Republic of Ireland: challenges and opportunities for developing practice

Drawing on their experience of mental health social work in Northern Ireland and the Republic of Ireland, the authors examine the impact of current legislative and policy change in both jurisdictions. The paper applies Lorenz’s theoretical framework to develop a comparative analysis of how global and country specific variables have interacted in shaping mental health social work. The analysis identifies linkages between factors and indicates similarities and differences in mental health social work practice. The paper highlights emerging discourses in this field and explores the impact on practice of developments such as de-institutionalisation, community care, and ‘user rights’ versus ‘public protection’. The article concludes with a review of key challenges facing social workers in both jurisdictions and identifies opportunities for developing mental health social work in ways that can positively respond to change and effectively address the needs of mental health service users and their carers. The analysis provides an opportunity to evaluate Lorenz’s theoretical framework and the paper includes a brief critical commentary on its utility as a conceptual tool in comparative social work