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Hereditary motor and sensory neuropathy with agenesis of the corpus callosum (HMSN/ACC) is a rare autosomal recessive condition characterised by early-onset severe progressive neuropathy, variable degrees of ACC and cognitive impairment. Mutations in

This chapter presents an overview of Australian efforts to reform the residential care sector. Concerns are the forced removal of Indigenous children and others from disadvantaged families as well as abuse and neglect in residential settings and lack of documentation of efficacy. Current goals include preventing behavioral contagion in some residential settings and building a trauma-informed approach into residential care. Promising program initiatives are identified, as is lack of national leadership for improving residential care. The chapter concludes with the matrix used throughout the book, which provides information on the current policy context, key trends and initiatives, characteristics of children and youth served, preparation of residential care personnel, promising programmatic innovations, and present strengths and challenges.

This chapter offers an overview of developments in policy, practice and research since the advent of what was described as Victoria’s “new era” of therapeutic residential care a decade ago. Not all developments have been positive. However, advances have clearly been made in policy development. Raising the leaving care age in Victoria is one of the most important because it has the capacity to much improve post-care education and training outcomes. Reducing the size of residential homes to better meet individual need and facilitate best possible matching of young people is another welcome development. Practice improvements such as higher staff training benchmarks and more intensive therapeutic responses to young people and families are also noteworthy. Perhaps most important is the gradual reframing of Victorian therapeutic residential care as an opportunity for hope, healing, and moving forward; too often it has been deemed a “last resort,” signaling the young person’s arrival at the “end of the line” after a dispiriting out-of-home-care journey.

Objective The objective of this study was to evaluate patients with ganglionic acetylcholine receptor antibody (gAChR-Ab) positive autoimmune autonomic ganglionopathy using a multimodal testing protocol to characterize their full clinical phenotype and explore biomarkers to quantify immunotherapy response. Methods We conducted a cohort study of 13 individuals (7 women, 21-69 years of age) with autonomic failure and gAChR-Ab >100 pM identified between 2005 and 2019. From 2018, all patients were longitudinally assessed with cardiovascular, pupillary, urinary, sudomotor, lacrimal and salivary testing, and Composite Autonomic Symptom Score (COMPASS-31) autonomic symptom questionnaires. The orthostatic intolerance ratio was calculated by dividing change in systolic blood pressure over time tolerated on head-up tilt. Eleven patients received immunotherapy. Results At first assessment, all 13 patients had cardiovascular and pupillary impairments, 7 of 8 had postganglionic sudomotor dysfunction, 9 of 11 had urinary retention and xeropthalmia, and 6 of 8 had xerostomia. After immunotherapy, there were significant improvements in orthostatic intolerance ratio (33.3 [17.8-61.3] to 5.2 [1.4-8.2], p = 0.007), heart rate response to deep breathing (1.5 [0.0-3.3] to 4.5 [3.0-6.3], p = 0.02), pupillary constriction to light (12.0 [5.5-18.0] to 19.0 [10.6-23.8]%, p = 0.02), saliva production (0.01 [0.01-0.05] to 0.08 [0.02-0.20] g/min, p = 0.03), and COMPASS-31 scores (52 to 17, p = 0.03). Orthostatic intolerance ratio correlated with autonomic symptoms at baseline (r = 0.841, p = 0.01) and following immunotherapy (r = 0.889, p = 0.02). Immunofluorescence analyses of skin samples from a patient 32 years after disease onset showed loss of nerve fibers supplying the dermal autonomic adnexa and epidermis, with clear improvements following immunotherapy. Interpretation Patients with autoimmune autonomic ganglionopathy demonstrated objective evidence of widespread sympathetic and parasympathetic autonomic failure, with significant improvements after immunotherapy. Quantitative autonomic biomarkers should be used to define initial deficits, guide therapeutic decisions, and document treatment response. ANN NEUROL 2021;89:753-768.

In a context of rapidly changing social and economic conditions and increasing practice complexity, critical research perspectives can create in-depth explanatory knowledge for social work practice. Drawing on a broader knowledge base, these approaches provide a comprehensive view of social phenomena and the causes of personal and social harm. They also offer a framework to guide ethical intervention based on principles of collaboration, social justice and social transformation. The aim of this article is to demonstrate how critically oriented research can deliver useful and actionable knowledge directly to the field and promote transformative change. The exemplar presented here is a critical participatory study exploring formal kinship care in Victoria, Australia. The research partnered actively with service users and practitioners, with mixed methods utilised and data analysed for content and themes. Findings revealed dissonant assumptions in relation to roles and responsibilities as an underlying cause of care and practice issues. New understandings and practical solutions for the field were generated by exploring study findings with stakeholders. This application of a critical research approach to the field of formal kinship care establishes that the method can provide a coherent, effective and ethical framework for inquiry.

N-methyl-d-aspartate receptor antibody (NMDAR-Ab) encephalitis consensus criteria has recently been defined. We aimed to examine the prevalence of NMDAR-Ab encephalitis in patients with first episode psychosis (FEP) and treatment resistant schizophrenia (TRS) on clozapine, using clinical investigations, antibody testing and to retrospectively apply diagnostic consensus criteria.Adult (18-65 years old) cases of FEP meeting inclusion criteria were recruited over three years and assessed using the Structured Clinical Interview for DSM-IV disorders (SCID). NMDAR-Ab was identified using a live cell-based assay (L-CBA). Seropositive cases were clinically investigated for features of encephalitis including neuro-imaging, EEG and CSF where possible. Serum was retested using immunohistochemistry (IHC) as part of diagnostic criteria guidelines. A cohort of patients with TRS was also recruited.112 FEP patients were recruited over 3 years. NMDAR-Ab seroprevalence was 4/112 (3.5%) cases. One case (1%) was diagnosed with definite NMDAR-Ab encephalitis and treated with immunotherapy. One of the three other seropositive cases met criteria for probable encephalitis. However all three were ultimately diagnosed with mood disorders with psychotic features. None have developed neurological features at three year follow up. 1/100 (1%) of patients with TRS was 100 patients with TRS were recruited. One case (1%) seropositive for NMDAR-Ab but did not meet criteria for encephalitis.NMDAR-Ab encephalitis as defined by consensus guidelines occured rarely in psychiatric services in this study. Further studies are needed to establish pathogenicity of serum NMDAR-Ab antibodies. Psychiatric services should be aware of the clinical features of encephalitis.

Therapeutic residential care (TRC) privileges healing from trauma for vulnerable children and young people. It presents an opportunity for staff to partner with families to overcome trauma-induced ...

IntroductionPost-COVID-19 complications require simultaneous characterisation and management to plan policy and health system responses. We describe the 12-month experience of the first UK dedicated post-COVID-19 clinical service to include hospitalised and non-hospitalised patients.MethodsIn a single-centre, observational analysis, we report the demographics, symptoms, comorbidities, investigations, treatments, functional recovery, specialist referral and rehabilitation of 1325 individuals assessed at the University College London Hospitals post-COVID-19 service between April 2020 and April 2021, comparing by referral route: posthospitalised (PH), non-hospitalised (NH) and post emergency department (PED). Symptoms associated with poor recovery or inability to return to work full time were assessed using multivariable logistic regression.Results1325 individuals were assessed (PH: 547, 41.3%; PED: 212, 16%; NH: 566, 42.7%). Compared with the PH and PED groups, the NH group were younger (median 44.6 (35.6–52.8) years vs 58.3 (47.0–67.7) years and 48.5 (39.4–55.7) years), more likely to be female (68.2%, 43.0% and 59.9%), less likely to be of ethnic minority (30.9%, 52.7% and 41.0%) or seen later after symptom onset (median (IQR): 194 (118–298) days, 69 (51–111) days and 76 (55–128) days; all pConclusionPost-COVID-19 symptoms were significant in PH and NH patients, with significant ongoing healthcare needs and utilisation. Trials of interventions and patient-centred pathways for diagnostic and treatment approaches are urgently required.

Access to education has long been associated with lifelong wellbeing and poverty prevention. Indeed, education is often described as a ‘passport out of poverty’. For care leavers, higher education access can create powerful social and economic protection, but poverty often creates both material and cultural barriers to this access. The research described here explored the access and achievement of care leavers in Australian higher education. The study employed mixed methods, including a literature review; examination of national data sets; an online survey of public universities; and interviews with out-of-home care (OOHC) providers. Here we present qualitative findings from the online survey and interviews which captured the perspectives of senior representatives within both the higher education and community service sectors. These findings reveal the role that childhood poverty, trauma and disadvantage play in affecting education outcomes for many growing up in OOHC. Learning deficits and disabilities clearly affect academic preparedness for higher education. Poverty can also limit the ability to afford the costs of university study and reduce the capacity to visualise and construct an educational future. Educational disadvantage is often combined with limited institutional support for care leavers, exacerbating their marginalisation from higher education. Our findings highlight both a paucity of Australian research in this area and the disturbingly small number of care leavers who successfully transition to higher education. Raising university access requires specific measures to redress poverty, including financial support for care leavers beyond the age of 18, and study bursaries, fee remission and accommodation support. More broadly, cultural change is needed to address the consequences of poverty, which often include low educational expectations and horizons.

IntroductionOrthostatic hypotension (OH) and supine hypertension (SH) are prevalent in alpha-synucle- inopathies, posing a therapeutic dilemma as OH treatment may worsen SH. We aimed to characterise SH in pure autonomic failure (PAF), multiple system atrophy (MSA), and Lewy body disorders (LBD: Parkinson’s disease and Dementia with Lewy bodies).Methods166 patients (72 PAF, 59 MSA, 35 LBD) underwent cardiovascular autonomic testing and 24hr- ambulatory blood pressure monitoring (24hr-ABPM). Demographic, clinical features, medications and cardiovascular autonomic biomarkers were compared.ResultsSH was present in more than half of patients with PAF, MSA and LBD (56%, 51% and 50%, respec- tively) without anti-hypotensive medications. Supine pre-stand BP during 24hr-ABPM detected SH with 60% sensitivity and 86% specificity [area under the curve 0.73 (95%CI 0.66-0.81)]. Supine noradrenaline levels were significantly higher in MSA vs PAF and LBD (268 vs 183 and 210 pg/ml, pConclusionsSH and nocturnal hypertension commonly co-exist and are independently associated with OH in alpha-synucleinopathies. 24hr-ABPM is useful in detecting SH in these patients. The pathophysiology of SH is likely to be heterogeneous and not entirely explained by residual sympathetic tone.

Post-coronavirus disease 19 (COVID-19) syndrome has substantial health and economic implications. It is multi-systemic, with prevalent autonomic symptoms. Understanding presentations and potential autonomic causes may help guide treatment strategies and recovery.All patients with a suspected or confirmed history of COVID-19 infection who underwent autonomic testing between May 2020 and October 2021 were reviewed retrospectively.We evaluated 62 patients (20 male, 42 female, mean age of 41.38 ±11.52). COVID-19 was PCR confirmed in 15 patients (26%), and five (8%) required acute hospital intervention. Most common symptoms included palpitations (81%), light-headedness/dizziness (62%), dyspnoea (48%), fatigue (46%), or cognitive symptoms(33%)Autonomic testing showed normal blood pressure responses to pressor stimuli, a mean respiratory sinus arrhythmia of 18.89b/m, and Valsalva ratio of 2.09. Postural tachycardia syndrome (PoTS) was diagnosed in 12 patients, autonomically mediated syncope (AMS) in 11, neurogenic orthostatic hypotension (NOH) in two, and initial orthostatic hypotension (IOH) in seven.Normal supine and upright plasma noradrenaline levels were measured in 34 patients (mean 283.38 pg/ml supine; 472.43pg/ml tilted).Autonomic testing was reassuring (PoTS and syncope) in the majority with abnormal testing (n=32, or 52%). Further phenotyping of PoTS to exclude neuropathic pathology may be needed. IOH and OH are important considerations.

BackgroundComplications following SARS-CoV-2 infection require simultaneous characterisation and management to plan policy and health system responses. We describe the 12-month experience of the first UK dedicated Post-COVID clinical service to include both hospitalised and non-hospitalised patients.MethodsIn a single-centre, observational analysis, we report outcomes for 1325 individuals assessed in the University College London Hospitals NHS Foundation Trust Post-COVID service between April 2020 and April 2021. Demography, symptoms, comorbidities, investigations, treatments, functional recovery, specialist referral and rehabilitation were compared by referral route (“post hospitalisation”, PH; “non-hospitalised”, NH; and “post emergency department”, PED). Symptoms associated with poor recovery or inability to return to work full-time were assessed using multivariable logistic regression.Findings1325 individuals were assessed (PH 547 [41.3%], PED 212 [16%], NH 566 [42.7%]. Compared with PH and PED groups, NH were younger (median 44.6 [35.6-52.8] vs 58.3 [47.0-67.7] and 48.5 [39.4-55.7] years), more likely to be female (68.2%, 43.0% and 59.9%), less likely to be from an ethnic minority (30.9%, 52.7% and 41.0%) and seen later after symptom onset (median [IQR]:194 [118-298], 69 [51-111] and 76 [55-128] days) (all pInterpretationSymptoms following SARS-CoV-2 infection were significant in both post- and non-hospitalised patients, with significant ongoing healthcare needs and utilisation. Trials of interventions and patient-centred pathways for diagnostic and treatment approaches are urgently required.FundingUCLH/UCL BRCResearch in contextPrevious evidenceLong COVID and post-COVID syndrome were first identified in April 2020. We searched PubMed and medrxiv for articles published up to April 30th, 2021, using the keywords “long COVID”, “post-COVID syndrome”, “persistent symptoms”, “hospitalised”, “community” and “non-hospitalised”. We identified 17 articles and 7 systematic reviews. Fifteen studies have considered symptoms, multi-organ or functional impairment but only one study to-date has considered all these variables in non-hospitalised COVID patients. No studies have compared symptom burden and management between non-hospitalised and hospitalised individuals as systematically assessed and managed in a dedicated post-COVID service.Added value of this studyFor the first time, we report the baseline characteristics, investigation and outcomes of initial assessment of all eligible patients in a dedicated multi-professional post-COVID service, including 547 post-hospitalisation, 566 non-hospitalised and 212 patients discharged from emergency department. Despite relatively low comorbidity and risk factor burden in non-hospitalised patients, we show that both non-hospitalised and hospitalised patients presenting with persistent symptoms after SARS-CoV2 infection have high rates of functional impairment, specialist referral and rehabilitation, even 6-12 months after the acute infection. These real-world data will inform models of care during and beyond the pandemic.Implications of all the available evidenceThe significant, long-lasting health and social consequences of SARS-CoV-2 infection are not confined to those who required hospitalisation. As with other long-term conditions, care of patients experiencing Long COVID or specific end-organ effects require consistent, integrated, patient-centred approaches to investigation and management. At public health and policy level, burden of post-COVID morbidity demands renewed focus on effective infection suppression for all age groups.

A 17yo Filipino man presented with a rapid onset meningoencephalitic illness, dysautonomia (cardiovas- cular and genitourinary), neuropsychiatric, myoclonus and cerebellar symptoms. Examination revealed lower limb proprioceptive loss and areflexia.CSF showed lymphocytosis, hypoglycorrachia and glial fibrillary acidic protein (GFAP) antibodies. MRI head was normal on D4 and D11, but repeat imaging (D25) showed a reversible splenial T2 hyperintensity, which improved by D40. Neurophysiology showed a sensory neuronopathy. Autonomic function testing confirmed sympathetic cardiovascular failure. Pupillometry showed bilateral Horner’s indicating further sympathetic deficit. Dynamic sweat testing showed evidence of post-ganglionic sudomotor dysfunction.He received treatment with IV methylprednisolone followed by a prednisolone taper with good response.GFAP is an intracytoplasmic protein, found in astrocytes, unmyelinated nerve fibres as well as dorsal root ganglia, in keeping with our patient’s clinical presentation. However, literature review shows signifi- cant heterogenicity in presentation and pathogenicity of the GFAP antibody is unclear, as it could be a bystander protein.Dysautonomia is reported in 24–57% of GFAP astrocytopathy, but has not been well-characterised. We describe the first in-depth autonomic testing in GFAP astrocytopathy which shows sympathetic cardio- vascular failure and evidence of sudomotor post-ganglionic dysfunction.yeeyen.goh@nhs.net|ABN Bursary

Ross syndrome is a rare syndrome of segmental autonomic dysfunction, characterised by a triad of tonic pupils, hyporeflexia and anhidrosis. We present an atypical case of such a patient, presenting with added features of cardiovascular autonomic dysfunction.Our case concerns a 66-year-old female, who experienced progressive stepwise deterioration in the functionality of her autonomic nervous system. Her symptoms began with a left Adie’s pupil, followed by a chronic dry cough and diarrhoea. The onset of anhidrosis and orthostatic hypotension subsequently occurred 30 and 40 years later, respectively.Autonomic function testing confirmed cardiovascular autonomic failure as well as deficiencies of sudomotor, salivary and tear function. Severe orthostatic hypotension was demonstrated along with an abnormal Valsalva response, and loss of the nocturnal circadian rhythm. Thermoregulatory and dynamic sweat testing further confirmed global anhidrosis.Our case highlights that patients do not always fit diagnostic criteria of eponymous syndromes, and usually demonstrate varying levels of autonomic dysfunction. We propose diagnosis of such atypical cases to be part of an Adie spectrum ganglionopathy, rather than attempting to fit into an eponymous syndrome phenotype. We further believe there to be an autoimmune basis to the Adie spectrum of disorders and have proposed immunotherapy as definitive management.a.basgaran@nhs.net|ABN Bursary

The year 2019 celebrated the thirtieth anniversary of the United Nations Convention on the Rights of the Child. This milestone gives researchers cause to reflect on what has been learned about facilitating children’s empowerment and agency in the context of research. We might consider how such learnings have been applied and what remains to be achieved. That context gives rise to this chapter, which presents the author’s ongoing interest in collaborative approaches to rights-based narrative research with children and young people. It is proposed here that the cornerstones of a rights-based framework for children’s research comprise inclusion, participation, empowerment and advocacy. These four elements are complementary to the co-creation of narratives drawing on constructivist linguistic concepts. Together, those perspectives offer a framework for critically examining opportunities and challenges encountered in developing rights-based narrative research with children and young people with trauma experience. Core to that framework are issues of ideology, ethics, recruitment, agency, maturation and change, culture and language, gender and dissemination. A single Australian case study which formed part of cross-national research in child and family welfare is utilized to illustrate these issues. Based on this critique and the author’s broader narrative research experience, a set of principles to guide the conduct of rights-based narrative research with children and young people is suggested.

Hereditary motor and sensory neuropathy with agenesis of the corpus callosum (HMSN/ACC) is a rare autosomal recessive condition characterised by early-onset severe progressive neuropathy, variable degrees of ACC and cognitive impairment. Mutations in SLC12A6 (solute carrier family 12, member 6) encoding the K+–Cl- transporter KCC3 have been identified as the genetic cause of HMSN/ACC. We describe fraternal twins with compound heterozygous mutations in SLC12A6 and much milder phenotype than usually described. Neither of our patients requires assistance to walk. The female twin is still running and has a normal intellect. Charcot-Marie-Tooth Examination Score 2 was 8/28 in the brother and 5/28 in the sister. Neurophysiology demonstrated a length-dependent sensorimotor neuropathy. MRI brain showed normal corpus callosum. Genetic analysis revealed compound heterozygous mutations in SLC12A6, including a whole gene deletion. These cases expand the clinical and genetic phenotype of this rare condition and highlight the importance of careful clinical phenotyping.

This research explored the experiences of care leavers, who lived in institutions (such as Children's Homes and orphanages) or other forms of out-of-home care between 1930 and 1989. Participants included representatives of three sub-cohorts: Forgotten Australians, members of the Stolen Generations and Child Migrants. Employing mixed methods, this research used three forms of data collection: surveys (n = 669), interviews (n = 92) and focus groups (n = 77). This research concentrated on participants’ experiences in care, leaving care, life outcomes after care (education, employment, health, wellbeing and relationships), coping strategies and resilience, current service needs and usage and participation in organisations as well as the Royal Commission into Institutional Responses to Child Sexual Abuse. Most participants experienced extreme neglect and abuse while in care. Leaving care, often after years of institutionalisation, was generally a frightening and demoralising process. Despite these challenges, a number of participants demonstrated remarkable resilience. For many, however, these experiences had negative consequences in adulthood including serious physical and mental health problems. This often made adult learning, paid employment and positive relationships virtually impossible. Most survivors carry high levels of trauma and complex unmet needs. Implications for policy, practice and services are drawn from key findings.

How best to support children and young people in foster care remains a challenge for child welfare. There has been little Australian research on the outcomes for children and young people placed in therapeutic foster care (TFC). This article aims to address this knowledge gap, presenting the evaluation of a state-wide model of TFC known as the Circle Program operating in Victoria, Australia. Data sources for the study were case assessment analysis; surveys of foster carers, program workers and other stakeholders in the sector; and both focus groups and individual interviews with foster care workers. The evaluation found that the Circle Program lessened the number of unplanned exits of children from foster placements compared with generalist foster care. Another important finding was that the Circle Program positively influenced foster carers' decisions to stay in the carer role. Key components perceived as contributing to outcomes of the Circle Program included enhanced training of foster carers, intensive carer support, specialist therapeutic support to the child and carer, therapeutic service to family members and a network of services to provide support to the child.

Australian children growing up in out-of-home care (OHC) have learning outcomes well below their mainstream peers. This Chapter explores learning opportunities and challenges confronting primary school children in care. It presents a contemporary overview of policy, practice and research in this domain. The Chapter examines socio-emotional and cognitive difficulties these children often bring into OHC, especially those deriving from attachment disruption and trauma. It also considers systemic issues encountered within the care system, including placement changes and a lack of service focus on learning. A broad range of contemporary Australian policy, practice and research responses are identified. Those focused on Aboriginal children, who are greatly over-represented in care, are of special import. It appears that placement services which privilege education and collaborate with schools attuned to the special needs of children in care, can redress gaps and address learning disabilities. Seizing the moment for early intervention during the primary years is clearly critical; there is evidence that learning gaps too often stretch beyond reach by the time children in care enter high school. Positive secondary and tertiary education outcomes, along with enhanced employment and life opportunities, build on strong primary schooling foundations. The Chapter illustrates that increased resourcing is needed to facilitate the achievement of improved education outcomes for Australian primary school children in OHC. Such investment will almost certainly result in improved lifelong wellbeing. These children have long been marginalised from equitable access to educational opportunities in a country that is well placed to offer much more.

Child and family practice is recognised as a field of social work that has become increasingly complex. While evidence is growing in relation to effective supervision, there has been little research about the attributes of an effective supervisor, or the components of effective supervision. This paper reports on research undertaken in Victoria, Australia, which explored practitioners’ and supervisors’ experiences of effective supervision in this field. Data collection involved in-depth interviews with experienced supervisors and supervisees in order to explore the concept of effective supervision from participants’ perspectives. The data were systematically interrogated using a thematic inductive process, designed to enhance the voice of participants in the research. The study findings confirmed the complexity and centrality of the supervisory relationship, with the experience of a safe supervisory relationship proving essential. The importance of contemporary knowledge, leadership skills, and an ...

People from out-of-home care backgrounds are largely absent from Australian higher education equity policy. Compared with the UK, Australia has moved slowly to consider legislative and programme incentives for young people who leave state, foster or kinship care and who wish to access higher education. One major reason for the relative inaction of the Australian higher education sector towards this cohort is the rigidity of the national equity framework established in 1990. This article argues that policy reform is required to improve the participation of people from out-of-home care backgrounds in Australian higher education. Effort could be directed into revising the national equity framework, in particular by including out-of-home care as a specific group to be monitored. In addition to revising the national policy architecture, further devolution of equity policy to institutional level may enable greater engagement with the out-of-home care cohort.

In many developed countries around the world residential care interventions for children and adolescents have come under increasing scrutiny. Against this background an international summit was organised in England (spring 2016) with experts from 13 countries to reflect on therapeutic residential care (TRC). The following working definition of TRC was leading: "Therapeutic residential care involves the planful use of a purposefully constructed, multi-dimensional living environment designed to enhance or provide treatment, education, socialization, support, and protection to children and youth with identified mental health or behavioural needs in partnership with their families and in collaboration with a full spectrum of community based formal and informal helping resources". The meeting was characterised by exchange of information and evidence, and by preparing an international research agenda. In addition, the outlines of a consensus statement on TRC were discussed. This statement, originally published in English and now reproduced in a Dutch translation, comprises inter alia five basic principles of care that according to the Work Group on Therapeutic Residential Care should be guiding for residential youth care provided at any time.

Central to the success of therapeutic foster care (TFC) is the quality and stability of the relationship between the child and carer. This key relationship may, from a therapeutic perspective, facilitate healing by addressing the impact of complex developmental trauma experienced by the child who has been placed in care. Stability of the carer–child relationship is critical in this context. Therapeutic carers have been shown to be significantly more likely to remain in the role of carer than their counterparts in mainstream foster care. The research reported on in this paper draws upon findings from an evaluation of a TFC programme and gives voice to the Circle Carers, presenting the components of TFC which are important to them. The paper commences with the story of Ruby in TFC as told by a carer. The focus then becomes a detailed exploration of the experience of carers and their capacity to care. Implications for practice are identified.

This paper provides a snapshot of early work undertaken to develop a trauma-informed complex case management and therapeutic practice model for kinship and foster care within a family and community services agency. The approach taken has initially involved supporting case workers and carers and working towards organisational cultural change. The shift in focus described arose from a concern that stability and healing goals were not well supported within the existing programmatic framework and practice approaches. Purposeful integration of theory with practice has been central to the change process. There is a clear rationale that working from a strong evidence base can create better outcomes for children and young people in out-of-home care. The paper reflects on work in progress. Action taken to date has educated the workforce around trauma-informed responses, developed clear protocols and a set of practice tools. This has embedded a strong foundation for further development as resources become available.

Objectives The objective of this study was to establish the level of awareness of HAND among healthcare providers, the screening tools that are currently used in its detection and factors that limit cognitive assessments. Methods We distributed a 12-item questionnaire to doctors and nurses who work in the Department of Genitourinary Medicine and Infectious Disease (GUIDE) service and also to doctors who work in the emergency department (ED) at St James Hospital. Results 35 surveys were collected, 54% (n = 19) from the GUIDE service and 46% (n = 16) from the ED. 82% (n = 29) of participants were doctors from interns to consultants. There was reasonable appreciation among participants with regards the prevalence of neurocognitive impairment (estimated at 29.1% among patients on HAART, and 39.3% among patients not on HAART). Screening tools were rarely used by GUIDE and ED clinicians (25% vs. 15% of the time). The Mini Mental State Examination (MMSE) was previously used by 37% (n = 13) of the group. Very few people had used the HIV Dementia Scale (HIVDS) 6% (n = 2). 34% of respondents felt that ‘Orientation in Person, Place and Time was a sufficient screening tool for cognitive assessment’. Lack of time, exposed environment and lack of availability of screening tool were cited as limitations to cognitive screening in the ED environment. Conclusions This study examines awareness of HAND among healthcare providers and also reasons for inadequate assessment. There is a need for consensus on screening guidelines. A quick, easy to use and readily available screening tool may have a role in the acute setting in identifying high-risk patients.

Farming families in rural and remote parts of the world are often marginalized from social care. This article describes a phenomenological exploration of problems presenting to financial counsellors in remote south-eastern Australia. Individual and family issues, referral processes and professional competencies have been identified, along with suggested changes to service delivery. Complex psycho-social difficulties are revealed. Financial counsellors, working in isolation, are unable to adequately address these. However, no social work service has been accessible to many consumers living in remote farming communities. Social work, within interdisciplinary partnerships, is being piloted as a result of this study.

Background Human immunodeficiency virus (HIV)-associated neurocognitive disorders occurs in 20%–50% of HIV-positive patients. We undertook this study to assess the prevalence of a positive screen for cognitive impairment in the clinic population at our institution and to demonstrate the feasibility of implementing a screening program in routine clinical encounters. Methods This was a cross-sectional study, and patients were recruited prospectively between December 2010 and February 2013. Inclusion criteria were as follows: patients were HIV positive, over the age of 18, capable of giving informed consent, and had sufficient ability to communicate in English. Patients were screened for cognitive impairment using the Brief Neurocognitive Screen. Results A total of 604 patients were recruited, and 51.5% had a positive screen for cognitive impairment. The majority of the study cohort were male (78.8%), mean age was 40.9 (standard deviation, 10.2) years, 70.9% were Irish, the most common mode of transmission was men who have sex with men (49.3%), 83% were on antiretroviral therapy, and 88.7% were virally suppressed. Logistic regression showed that the main factors predictive of a positive screen for cognitive impairment were the endorsement of cognitive symptoms (P = .024), being born in Africa (P < .000001), the use of benzodiazepines (P = .00341), being unemployed (P = .008), and consumption of more than 40 units of alcohol weekly (P = .035). There was a positive screen for depression in 9.1% and a positive screen for anxiety in 24.5%. Conclusions The study highlights the necessity for a structured, prospective, large-scale screening program for cognitive impairment across countries with limited resources and demonstrates the feasibility of easily implementing this with minimal training.

High levels of cardiovascular fitness and physical activity are associated with higher levels of cognitive function in people with HIV, thus, they may reduce the risk of developing HIV-associated neurocognitive disorder (HAND). This study aimed to investigate the effects of a 16-week aerobic exercise intervention on cognitive function in people with HIV. Eleven participants living with HIV were recruited into the study. Participants were randomised into either an exercise group (n = 5), that completed a 16-week aerobic exercise programme training, 3 times per week (2 supervised sessions and one unsupervised session) or a control group (n = 6) that received no intervention. Outcomes measured included cognitive function (Montreal cognitive assessment (MOCA) and the Trail making tests A and B), aerobic fitness (modified Bruce protocol), sleep quality (Pittsburgh sleep quality index; PSQI) and physical activity levels (seven-day accelerometry). At baseline, higher levels of moderate physical activity were positively correlated with higher MOCA scores and levels of aerobic fitness were negatively associated with Trail A scores (P = 0.04 and P = 0.001 respectively). However, exercise training did not induce any significant improvements in cognitive function or aerobic fitness. The overall mean adherence rate to the exercise programme was 60%. In conclusion, in the present study a 16-week aerobic exercise intervention did not affect the cognitive function of participants with HIV. It is likely that longer intervention periods and/or higher adherence rates to exercise might be needed for an aerobic exercise programme to be effective in improving cognitive function in a cohort with no baseline cognitive impairments.

none 32 si The International Work Group for Therapeutic Residential Care convened an International Summit on ‘Pathways to Evidence-Based Practice’ at Loughborough University (GBR), Centre for Child and Family Research on 27-29 April, 2016 with generous support from the Sir Halley Stewart Trust and in partnership with The European Scientific Association on Residential and Family Care for Children and Adolescents (NLD) (EUSARF), the International Association for Outcome-Based Evaluation and Research on Family and Children’s Services (ITA) (IAOBER) and the Association of Children’s Residential Centers (USA) and with the additional support of Action for Children (GBR) and the National Implementation Service (NIS) (GBR). Membership includes: Lisa Holmes (Chair), Director, Centre for Child and Family Research, Loughborough University (GBR); James K. Whittaker (Co-Chair), Charles O. Cressey Endowed Professor Emeritus, University of Washington, School of Social Work, Seattle (USA); Jorge Fernandez del Valle, Professor of Psychology and Director, Child and Family Research Group, University of Oviedo (ESP); Frank Ainsworth, Senior Principal Research Fellow (Adjunct), James Cook University, School of Social Work and Human Services, Townsville, Queensland (AUS); Tore Andreassen, Psychologist, The Norwegian Directorate for Children, Youth and Family Affairs (NOR); James P. Anglin, Professor, Faculty of the School of Child and Youth Care, University of Victoria (CAN); Christopher Bellonci, Board-Certified Child/Adolescent and Adult Psychiatrist; Associate Professor, Psychiatry Department, Tufts University School of Medicine, Boston, MA (USA); David Berridge, Professor of Child and Family Welfare, School for Policy Studies, University of Bristol (GBR); Amaia Bravo, Lecturer, Department of Psychology, University of Oviedo (ESP); Cinzia Canali, Senior Researcher, Fondazione Emanuela Zancan, Padova (ITA) and President, International Association of Outcome-Based Evaluation and Research in Family and Children’s Services (IAOBER); Mark Courtney, Professor, School of Social Service Administration, University of Chicago (USA); Laurah Currey, Chief Operating Officer, Pressley Ridge, Pittsburgh, PA (USA) and President, Association for Children’s Residential Centers, (USA); Daniel. L. Daly, Executive Vice President and Director of Youth Care, Father Flanagan’s Boys’ Home, Boys Town, NE (USA); Robbie Gilligan, Professor of Social Work and Social Policy, Trinity College Dublin IRE), Hans Grietens, Professor, Centre for Special Needs Education & Youth Care, University of Groningen (NLD) and President, European Scientific Association on Residential and Family Care for Children and Adolescents (EUSARF); Annemiek T. Harder, Assistant professor, Department of Special Needs Education and Youth Care, University of Groningen (NLD); Martha J. Holden, Senior Extension Associate with the Bronfenbrenner Center for Translational Research and the Principal Investigator and Director of the Residential Child Care Project at Cornell University, Ithaca, NY (USA); Sigrid James, Professor, Department of Social Work & Social Ecology, School of Behavioral Health, Loma Linda University, CA (USA); Andrew Kendrick, Professor of Residential Child Care, School of Social Work and Social Policy at the University of Strathclyde (GBR) and Consultant at the Centre of Excellence for Looked After Children in Scotland (CELCIS) and the Centre for Youth and Criminal Justice (CYCJ) (UK); Erik J. Knorth, Professor, Department of Special Needs Education and Youth Care, University of Groningen (NLD); Mette Lausten, Senior Researcher at SFI - The Danish National Centre for Social Research, Copenhagen (DNK), John S. Lyons, Senior Policy Fellow at Chapin Hall, University of Chicago, IL (USA); Eduardo Martin, Lecturer at the Department of Developmental and Educational Psychology, University of La Laguna, Tenerife (ESP); Samantha McDermid, Research Fellow, Centre for Child and Family Research, Loughborough University (GBR); Patricia McNamara, Senior Fellow (Honorary), Department of Social Work, University of Melbourne (AUS); Laura Palareti, Assistant Professor in Social Psychology, Department of Education Studies, University of Bologna (ITA); Susan Ramsey, Parent and Former Children’s Mental Health Advocate, The Walker School, Needham, MA (USA); Kari M. Sisson, Executive Director, Association of Children’s Residential Centers (USA); Richard W. Small, Walker Executive Director Emeritus, The Walker School, Needham, MA (USA); June Thoburn, Emeritus Professor of Social Work, University of East Anglia (GBR); Ronald Thompson, Senior Director, Boys Town National Research Institute for Child and Family Studies, Boys Town, NE (USA); Anat Zeira, Professor, School of Social Work and Social Welfare, Hebrew University of Jerusalem, and Head of Research and Evaluation at the Haruv Institute (ISR). Our work group wishes to thank CFRC staffer Laura Dale at Loughborough for extraordinary efforts in producing this statement in record time and for her care and assistance with all phases of our Summit activity. Whittaker, James K; Holmes, Lisa; del Valle, Jorge F.; Ainsworth, Frank; Andreassen, Tore; Anglin, James; Bellonci, Christopher; Berridge, David; Bravo, Amaia; Canali, Cinzia; Courtney, Mark; Currey, Laurah; Daly, Daniel; Gilligan, Robbie; Grietens, Hans; Harder, Annemiek; Holden, Martha; James, Sigrid; Kendrick, Andrew; Knorth, Erik; Lausten, Mette; Lyons, John; Martin, Eduardo; Mcdermid, Samantha; Mcnamara, Patricia; Palareti, Laura; Ramsey, Susan; Sisson, Kari; Small, Richard; Thoburn, June; Thompson, Ronald; Zeira, Anat Whittaker, James K; Holmes, Lisa; del Valle, Jorge F.; Ainsworth, Frank; Andreassen, Tore; Anglin, James; Bellonci, Christopher; Berridge, David; Bravo, Amaia; Canali, Cinzia; Courtney, Mark; Currey, Laurah; Daly, Daniel; Gilligan, Robbie; Grietens, Hans; Harder, Annemiek; Holden, Martha; James, Sigrid; Kendrick, Andrew; Knorth, Erik; Lausten, Mette; Lyons, John; Martin, Eduardo; Mcdermid, Samantha; Mcnamara, Patricia; Palareti, Laura; Ramsey, Susan; Sisson, Kari; Small, Richard; Thoburn, June; Thompson, Ronald; Zeira, Anat

Kinship care is the fastest growing form of out-of-home care in Australia, as it is in many other countries. The Victorian Government's response has been to establish 18 programmes across the state to provide support to kinship families. The scoping project described here, based on interviews with key programme staff, explores the experiences of the new programmes in providing support, specifically respite care, to kinship families. It has produced a picture, based on qualitative and quantitative data, of how respite care is understood, the perceived respite needs of kinship families, how services are organized and provided, identified barriers to families accessing support, the effect of respite provision and what constitutes optimal practice. The findings establish a basis for a best practice model of service provision for this increasingly significant family type.

Adolescent suicide rates in Australia have fallen significantly during recent years. The incidence, however, clearly remains a serious concern for young people, parents, professionals and policy makers. Some groups of Australian youth appear to be at heightened risk. Adolescents within the welfare system, indigenous, rural and refugee youth, along with same sex attracted young people often need very careful monitoring and support. Young men continue to take their lives more frequently than young women. Prevention programmes in Australia aim to develop resilience in young people, families and communities that can serve as protection against self harm and suicide. The improvement of mental health literacy, a fostering of adolescent self-efficacy and better access to early intervention strategies are currently privileged in national and state policies related to young people in Australia. More work is needed, however, to achieve a well integrated mental health framework capable of effectively addressing adolescent suicide prevention into the twenty-first century.

Aim. To evaluate the utility of a seizure care pathway for seizure presentations to the emergency department (ED) in order to safely avoid unnecessary admission and to provide early diagnostic and therapeutic guidance and minimize length of stay in those admitted. Methods. 3 studies were conducted, 2 baseline audits and a 12-month intervention study and prospective data was collected over a 12-month period (Nov 2008-09). Results. Use of the Pathway resulted in a reduction in the number of epilepsy related admissions from 341 in 2004 to 276 in 2009 ( 𝑃 = 0 . 0 0 0 6 ); a reduction in the median length of stay of those admittedfrom 4-5 days in the baseline audits to 2 days in the intervention study ( 𝑃 ≤ 0 . 0 0 1 ); an improvement in time to diagnostic investigations such as CT brain, MRI brain and Electroencephalography ( 𝑃 ≤ 0 . 0 0 1 , 𝑃 ≤ 0 . 0 4 8 , 𝑃 ≤ 0 . 0 0 1 ); a reduction in readmission rates from 45.1% to 8.9% ( 𝑃 ≤ 0 . 0 0 1 ); and an improvement in follow-up times from a median of 16 weeks to 5 weeks ( 𝑃 0 . 0 0 1 ). From a safety perspective there were no deaths in the early discharged group after 12 months follow-up. Conclusion. The burden of seizure related admissions through the ED can be improved in a safe and effective manner by the provision of a seizure care pathway.

Narrative research conducted over time creates opportunities for the co-creation of knowledge about the lived experience of children and young people as they grow and change. This article revisits two Australian studies with young people confronted by difficult mental health and welfare circumstances who have been successfully engaged in narrative research over substantial periods of time. Rights-based critique of these studies from a collective standpoint of inclusion, participation, empowerment and advocacy illustrates both opportunity and challenge. A set of research principles is distilled from this critique to inform rights-based longitudinal narrative studies with children and young people.

The role for staff within the residential youth justice facility is an intense one, offering both reward and challenge. Post-traumatic stress related to serious episodes of violence and vicarious trauma relating to the abuse and neglect derived from the residents' personal narratives are common. In recent years a residential center in Melbourne, Victoria, Australia has experimented with provision of a Staff Support and Supervision Program (SSSP). This article describes the context which gave rise to the program, its multi-theoretical underpinning, and its modus operandi. A qualitative evaluation highlights practice challenges and leadership techniques. The model is now being applied in two other Victorian youth justice centers.

For millennia, women have carried culture across time and space. They have been the traditional custodians of folklore and fable. Women are expert at conducting rituals, holding secrets and telling stories. Yet the meanings they ascribe to situations, events and processes have often gone unheard or unheeded outside the safety of the `sisterhood'. Even there, women's voices can be silenced. Ethnography would appear offer the perfect window through which to access women's wisdom and experience. Yet even with the advantage of thick descriptions and conversational narratives there are major challenges to `giving women voice'. Patriarchy continues to cast long shadows across even the most gender sensitive of qualitative research methods. In this article two studies are sourced to illustrate opportunities and challenges associated with feminist ethnography as social work research.

English For social work researchers, engaging managers and practitioners in evaluation has always proved complex. A recent international seminar facilitated a comparison of challenges and opportunities for undertaking collaborative research evaluations in Italy and Australia. Issues concerning motivation and resistance regarding the evaluation process are discussed, along with the role for social work education. French Pour les chercheurs en travail social, impliquer les managers et les praticiens dans l’évaluation a toujours été complexe. Un séminaire international récent a facilité la comparaison des challenges et des opportunités pour entreprendre des recherches collaboratives sur les évaluations en Italie et en Australie. Les problèmes concernant la motivation et la résistance au regard du processus d’évaluation sont discutés, de même que le rôle de la formation en travail social. Spanish Para los investigadores de trabajo social siempre ha sido una tarea compleja el enganchar a los ‘managers’ y trabajadores en tareas de evaluación. Un seminario internacional reciente ha facilitado una comparación de los retos y oportunidades para colaborar en evaluaciones en Italia y Australia. Se examinan cuestiones de motivación para la evaluación y resistencia a la misma, junto con el papel de la educación en el trabajo social.

Australian women killed by their partners have often been understood to come from backgrounds of poverty and marginalisation. However, it has become clear that a number of more affluent women also fall victim to intimate partner homicide. Notwithstanding their socioeconomic status, it seems that women victims of lethal violence lack the power to protest. This paper describes qualitative case study research with middle class women friends of a victim of intimate partner homicide. These women are determined to 'give voice' to their friend; they explore how they relate differently now to issues of gender, power and violence within the family and in the community. (author abstract)

This chapter presents research into staff experience at two rather different youth justice facilities one in England and the other in Australia. It explores the challenges of prison officer work with young males, aged 15-17 years old in an English young offender institution. The chapter analyses the way that the perceived 'pains' of prison officer work influenced staff's perceptions of child prisoners, the construction of institutional 'misconduct' and the willingness to use punitive measures to gain or maintain social order. It discusses the real challenges of working in a low trust and tense environment with limited opportunities for emotional expression or discharge. The chapter focuses on an Australian initiative for custodial staff working with young people in custody. It revisits the context which gave rise to this successful ongoing programme, its multi-theoretical underpinning and modus operandi. Thechapter explores with consideration of similarities and differences between these models of residential youth justice.

International research has found that care leavers rarely transition to higher education in the UK, Europe and the USA. In Australia, however, there has been a paucity of research into the under-representation of care leavers in higher education. This chapter reviews the findings of a national research project into the university access and achievement of care leavers. The project was led by La Trobe University and involved four key stages: a global literature review; analysis of relevant data sources; an online survey of public universities; and interviews with community service organizations. Findings and recommendations are considered in the context of international research and policy initiatives.