“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Adding SUGAR : service user and carer collaboration in mental health nursing research

‘SUGAR: Service users and carers group advising on research’ is an exciting initiative established to develop collaborative working in mental health nursing research between mental health service users, carers, researchers and practitioners at City University London, UK. This paper will describe the background to SUGAR and how and why it was established; how the group operates; some of the achievements to date including researcher reflections; and case studies of how this collaboration influences our research. Written reflective narratives of service user and carer experiences of SUGAR were analysed using constant comparative methods by the members. Common themes are presented with illustrative quotes. The article highlights the benefits and possible limitations identified so far by members of SUGAR; outlines future plans and considers the findings in relation to literature on involvement and empowerment. This paper has been written by staff and members of SUGAR and is the first venture into collaborative writing of the group and reflects the shared ethos of collaborative working.

Healthcare users’ experiences of communicating with healthcare professionals about children who have life-limiting conditions: A qualitative systematic review protocol

REVIEW QUESTION / OBJECTIVE The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users’ experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, “healthcare users” will be taken to include children who have life-limiting conditions and their families. The question to be addressed is: - What are healthcare users’ experiences of communicating with healthcare professionals about children who have life-limiting conditions? INCLUSION CRITERIA - Types of participants: This review will consider all qualitative studies that focus on users of healthcare services for children who have life-limiting conditions. These users are anticipated to include children who have a life-limiting condition and their family members. In instances where children are not under the legal care of one or both parents, service users may also include other types of legal guardians. - Phenomena of interest: This review will consider experiences of communicating with healthcare professionals about children who have life-limiting conditions. - Context: This review will consider studies relating to communication with healthcare professionals about children who have a life-limiting condition, irrespective of whether the healthcare service is based in a hospital, hospice, or community setting. There is no restriction on the country in which a study was conducted.

Implementing low intensity CBT in case management of clients with severe mental illness

In a previous chapter (Dean and Kavanagh, Chapter 37), the authors made a case for applying low intensity (LI) cognitive behaviour therapy (CBT) to people with serious mental illness (SMI). As in other populations, LI CBT interventions typically deal with circumscribed problems or behaviours. LI CBT retains an emphasis on self-management, has restricted content and segment length, and does not necessarily require extensive CBT training. In applying these interventions to SMI, adjustments may be needed to address cognitive and symptomatic difficulties often faced by these groups. What may take a single session in a less affected population may require several sessions or a thematic application of the strategy within case management. In some cases, the LI CBT may begin to appear more like a high-intensity (HI) intervention, albeit simple and with many LI CBT characteristics still retained. So, if goal setting were introduced in one or two sessions, it could clearly be seen as an LI intervention. When applied to several different situations and across many sessions, it may be indistinguishable from a simple HI treatment, even if it retains the same format and is effectively applied by a practitioner with limited CBT training. ----- ----- In some ways, LI CBT should be well suited to case management of patients with SMI. treating staff typically have heavy workloads, and find it difficult to apply time-consuming treatments (Singh et al. 2003). LI CBT may allow provision of support to greater numbers of service users, and allow staff to spend more time on those who need intensive and sustained support. However, the introduction of any change in practice has to address significant challenges, and LI CBT is no exception. ----- ----- Many of the issues that we face in applying LI CBT to routine case management in a mnetal health service and their potential solutions are essentially the same as in a range of other problem domains (Turner and Sanders 2006)- and, indeed, are similar to those in any adoption of innovation (Rogers 2003). Over the last 20 years, several commentators have described barriers to implementing evidence-based innovations in mental health services (Corrigan et al. 1992; Deane et al. 2006; Kavanagh et al. 1993). The aim of the current chapter is to present a cognitive behavioural conceptualisation of problems and potential solutions for dissemination of LI CBT.

Ageing of people with an intellectual disability: Effective training for frontline workers

While the attainment of late life represents a significant achievement for people with an intellectual disability, increased life expectancy has resulted in growing concerns about the extent to which disability service providers are ready to meet the changing needs of increasing numbers of older people and facilitate their ongoing social inclusion. Training of frontline disability staff is widely accepted as an effective strategy for increasing organisational capacity to contribute to improved quality of life for people with an intellectual disability. The study identifies training needs analyses and 'ready-to-deliver' training programs for frontline disability services staff working with adults with an intellectual disability who are ageing, assesses whether the training programs contribute to improved quality of life outcomes for service users, and makes recommendations for future research and development of training for disability services staff who work with older people with intellectual disability.

The Large Allen Cognitive Level Screen as an indicator for medication adherence among adults accessing community mental health services

Background: Medication remains the cornerstone treatment for mental illness. Cognition is one of the strongest predictors of non-adherence. The aim of this preliminary investigation was to examine the association between the Large Allen Cognitive Level Screen (LACLS) and medication adherence among a small sample of mental health service users to determine whether the LACLS has potential as a screening tool for capacity to manage medication regimens. Method: Demographic and clinical information was collected from a small sample of people who had recently accessed community mental health services. Participants then completed the LACLS and the Medication Adherence Rating Scale (MARS) at a single time point. The strength of association between the LACLS and MARS was examined using Spearman rank-order correlation. Results: A strong positive correlation between the LACLS and medication adherence (r = 0.71, p = 0.01) was evident. No participants reported the use of medication aids despite evidence of impaired cognitive functioning. Conclusion: This investigation has provided the first empirical evidence indicating that the LACLS may have utility as a screening instrument for capacity to manage medication adherence among this population. While promising, this finding should be interpreted with caveats given its preliminary nature.

Women from refugee backgrounds and their experiences of attending a specialist antenatal clinic : narratives from an Australian setting

Problem: In response to an identified need, a specialist antenatal clinic for women from refugee backgrounds was introduced in 2008, with an evaluation planned and completed in 2010. Question: Can maternity care experiences for women from refugee backgrounds, attending a specialist antenatal clinic in a tertiary Australian public hospital, be improved? Methods: The evaluation employed mixed methods, generating qualitative and quantitative data from two hospital databases, a chart audit, surveys and interviews with service users, providers and stakeholders. Contributions were received from 202 participants. Findings: The clinic was highly regarded by all participants. Continuity of care throughout the antenatal period was particularly valued by newly arrived women as it afforded them security and support to negotiate an unfamiliar Western maternity system. Positive experiences decreased however; as women transitioned from the clinic to labour and postnatal wards where they reported that their traditional birthing and recuperative practices were often interrupted by the imposition of Western biomedical notions of appropriate care. The centrally located clinic was problematic, frequently requiring complex travel arrangements. Appointment schedules often impacted negatively on traditional spousal and family obligations. Conclusions: Providing comprehensive and culturally responsive maternity care for women from refugee backgrounds is achievable, however it is also resource intensive. The production of translated information which is high quality in terms of production and content, whilst also taking account of languages which are only rarely encountered, is problematic. Cultural competency programmes for staff, ideally online, require regular updating in light of new knowledge and changing political sensitivities.

Digital storytelling as a social work tool : learning from ethnographic research with women from refugee backgrounds

This paper reflects on the wider potential of digital narratives as a useful tool for social work practitioners. Despite the multiple points of connection between narrative approaches and social work, the influence of narratives on practice remains limited. A case study of a digital storytelling (DST) process employed in a research project with a small group of lone mothers from refugee backgrounds is used to trigger discussion of broader applications of DST as part of everyday social work practice. The use of DST acknowledged women’s capacities for self-representation and agency, in line with participatory and strengths-based approaches inherent in contemporary social work. The benefits of using DST with lone mothers from refugee backgrounds illustrate how this method can act as a pathway to produce counter-narratives, both at the individual and broader community levels. Documenting life stories digitally provides the opportunity to construct narratives about experiences of relocation and settlement as tools for social advocacy, which can assist social workers to ensure meaningful outcomes for service-users. These propositions can serve to inform social work practices with people from refugee backgrounds and address some of the intricacies of working in diverse and challenging contexts.

Life story work and social work practice : a case study with ex-prisoners labelled as having an intellectual disability

In common with other professions social workers have the power to articulate certain ‘‘truths’’ about the people who use their services (Hare Mustin, 1994). These knowledge statements about people, often situated in case files may become the only background information of the lived experience for people with disability (Gillman, Swain, & Heyman, 1997). Social workers need to develop interviewing, assessment and recording practices that give precedent to the worldview of service users, if they are to truly understand and respond effectively to people's lives (Bigby, 2007). One such way of doing this is by adopting a life story approach to working with vulnerable people, which can provide a holistic stance to a person's social reality (Ortiz, 1985). This article outlines the use of this approach in research with Queensland ex-prisoners who were labelled as having an intellectual disability. By explaining the process used by the first author (hereafter known as the researcher), the methodological findings of this study illustrate how life story work can contribute to social work practice.

Setting measureable goals with young people : qualitative feedback from the Goal Attainment Scale in youth mental health

Introduction Measuring occupational performance is an essential part of clinical practice; however, there is little research on service user perceptions of measures. The aim of this investigation was to explore the acceptability and utility of one occupational performance outcome measure, Goal Attainment Scaling, with young people (12–25 years old) seeking psychological help. Method Semi-structured interviews were conducted with ten young people seeking help from a youth mental health clinic. Interviews were audio taped and a field diary kept. Interviews were transcribed verbatim and analysed using content analysis. Results were verified by member checking. Results All participants were able to engage in using Goal Attainment Scaling to set goals for therapy, and reported the process to be useful. The participants identified the physical location and ownership of the scale was important to help motivate them to work on their goals. Conclusion Young help-seekers see Goal Attainment Scaling as an acceptable tool to facilitate the establishment of functional goals. Young service users were particularly keen to maintain control over the physical location of completed forms.

Victoria's Child FIRST and IFS differential response system : progress and issues

Differential response has long been utilized by statutory child protection systems in Australia. This article describes the advent and history of Victoria's differential response system, with a particular focus on the Child FIRST and IFS programme. This program entails a partnership arrangement between the Department of Human Services child protection services and community-based, not-for-profit agencies to provide a diverse range of early intervention and prevention services. The findings of a recent external service system evaluation, a judicial inquiry, and the large-scale Child and Family Services Outcomes Survey of parents/carers perspectives of their service experiences are used to critically examine the effectiveness of this differential response approach. Service-user perspectives of the health and wellbeing of children and families are identified, as well as the recognized implementation issues posing significant challenges for the goal of an integrated partnership system. The need for ongoing reform agendas is highlighted along with the policy, program and structural tensions that exist in differential response systems, which are reliant upon partnerships and shared responsibilities for protecting children and assisting vulnerable families. Suggestions are made for utilizing robust research and evaluation that gives voice to service users and promotes their rights and interests.

Cultural safety, diversity and the servicer user and carer movement in mental health research

This study will be of interest to anyone concerned with a critical appraisal of mental health service users’ and carers’ participation in research collaboration and with the potential of the postcolonial paradigm of cultural safety to contribute to the service user research (SUR) movement. The history and nature of the mental health field and its relationship to colonial processes provokes a consideration of whether cultural safety could focus attention on diversity, power imbalance, cultural dominance and structural inequality, identified as barriers and tensions in SUR. We consider these issues in the context of state-driven approaches towards SUR in planning and evaluation and the concurrent rise of the SUR movement in the UK and Australia, societies with an intimate involvement in processes of colonisation. We consider the principles and motivations underlying cultural safety and SUR in the context of the policy agenda informing SUR. We conclude that while both cultural safety and SUR are underpinned by social constructionism constituting similarities in principles and intent, cultural safety has additional dimensions. Hence, we call on researchers to use the explicitly political and self-reflective process of cultural safety to think about and address issues of diversity, power and social justice in research collaboration.

Cultural safety and diversity: Refocusing our energies in mental health nursing practice, education and research

INTRODUCTION AND BACKGROUND: This presentation draws on a body of work assessing cultural safety's potential to generate change in mental health nursing research (Cox and Simpson 2015), in education and in clinical practice (Cox and Taua 2013, 2016; Happell, Cowin, Roper, Lakeman & Cox 2013). It presents evidence to suggest that cultural safety could resolve the conceptual confusion surrounding culture and diversity in nursing curricular, in clinical and in research practice. The history and nature of mental health work recommend cultural safety to focus attention on diversity, power imbalance, racism, cultural dominance, and structural inequality, identified as barriers and tensions in clinical practice and in service user participation. Cultural safety gives mental health nursing a well theorized and articulated model, which is evolving to improve practice into the future. DESCRIPTION: This work involved an immersion in the literature on cultural safety and the Service User Research movement. It draws on 5 months' work with a service users' research group in the UK and reflections on 9 years of cultural safety teaching. POLICY/PRACTICE CHANGE: This work provokes a crucial change of emphasis from locating the source of issues in the diversity of people to locating it in how society responds to diversity: a change from individualistic to systemic concerns. IMPLICATIONS FOR MENTAL HEALTH NURSING: Cultural safety in clinical practice, education, and research is specifically concerned with awareness of the impact of systemic workplace cultures and with staff cultural self-awareness to bring about cultural change and person-centred care of individuals' unique needs and aspirations within their life context.

Exploring changing culture and building capacity in research with consumers, carers and consumer companions

Background Australian policy mandates consumer and carer participation in mental health services at all levels including research. Inspired by a UK model - Service Users Group Advising on Research [SUGAR] - we conducted a scoping project in 2013 with a view to create a consumer and carer led research process that moves beyond stigma and tokenism, that values the unique knowledge of lived experience and leads to people being treated better when accessing services. This poster presents the initial findings. Aims The project’s purpose was to explore with consumers, consumer companions and carers at the Metro North Mental Health-RBWH their interest in and views about research partnerships with academic and clinical colleagues. Methods This poster overviews the initial findings from three audio-recorded focus groups conducted with a total of 14 consumers, carers and consumer companions at the Brisbane site. Analysis Our work was guided by framework analysis (Gale et al. 2013). It defines 5 steps for analysing narrative data: familiarising; development of categories; indexing; charting and interpretation. Eight main ideas were initially developed and were divided between the authors to further index. This process identified 37 related analytic ideas. The authors integrated these by combining, removing and redefining them by consensus though a mapping process. The final step is the return of the analysis to the participants for feedback and input into the interpretation of the focus group discussions. Results 1. Value & Respect: Feeling Valued & Respected, Tokenism, Stigma, Governance, Valuing prior knowledge / background 2. Pathways to Knowledge and Involvement in Research: ‘Where to begin’, Support, Unity & partnership, Communication, Co-ordination, Flexibility due to fluctuating capacity 3. Personal Context: Barriers regarding Commitments & the nature of mental illness, Wellbeing needs, Prior experience of research, Motivators, Attributes 4. What is research? Developing Knowledge, What to do research on, how and why? Conclusion and Discussion Initial analysis suggests that participants saw potential for ‘amazing things’ in mental health research such as reflecting their priorities and moving beyond stigma and tokenism. The main needs identified were education, mentoring, funding support and research processes that fitted consumers’ and carers’limitations and fluctuating capacities. They identified maintaining motivation and interest as an issue since research processes are often extended by ethics and funding applications. Participants felt that consumer and carer led research would value the unique knowledge that the lived experience of consumers and carers brings and lead to people being treated better when accessing services.

Caution, helping may be hazardous: Client abuse, threats and assaults

The shooting of a social worker by a client on the Gold Coast in 1991 graphically illustrated the issue of physical assaults and violence by service users against social workers. In this article we look at the incidence of physical assault, threats of violence, abuse of agency property and verbal abuse to social and other welfare workers by clients, using data from a survey in Melbourne. We then look at probable causes of menacing behaviour, such as issues involved in work with involuntary clients' and we discuss options for preventing and coping with violence and abuse in the welfare work place.