Priorities and challenges for a palliative approach to care for rural indigenous populations: A scoping review

We carried out a scoping review to identify key priorities and challenges relevant to rural Indigenous palliative care stated in existing literature. Our scoping review activities followed Arskey and O'Malley's principles for conducting a scoping review. We included peer‐reviewed literature from MEDLINE, CINAHL and EMBASE that included a discussion of Indigenous populations, palliative care, and rural settings, and did not use date limits. The literature search was conducted in April 2016, and the retrieved literature was screened for relevance and appropriateness April 2016–March of 2017. In addition to the academic literature, a scan of the grey literature was conducted in March 2017. The retrieved grey literature was screened for relevance and reviewed by a team from a provincial health authority serving Indigenous peoples to ensure relevance in a rural BC setting. Once reviewed for relevance and appropriateness, we added four reports to supplement our analysis. Ultimately, 44 peer‐reviewed articles and 4 pieces of grey literature met our inclusion criteria and were included in the review. Our analysis revealed several challenges and priorities relevant to rural Indigenous palliative care. Key challenges included: (i) environmental and contextual issues; (ii) institutional barriers; and (iii) interpersonal dynamics challenging client/clinician interactions. Priorities included: (i) family connections throughout the dying process; (ii) building local capacity for palliative care to provide more relevant and culturally appropriate care; and (iii) flexibility and multi‐sectoral partnerships to address the complexity of day‐to‐day needs for patients/families. These findings point to several areas for change and action that can improve the relevance, access and comprehensiveness of palliative care programming for rural Indigenous communities in Canada and elsewhere. Taking into account of the diversity and unique strengths of each Indigenous community will be vital in developing sustainable and meaningful change.     

‘Everyone has an agenda’: Professionals’ understanding and negotiation of risk within the Guardianship system of Victoria,Australia

It is frequently asserted that pressures to assess and manage risk have eroded the therapeutic, rights‐based foundation of the human services profession. Some argue that human service workers operate in a culture of fear in which self‐protection and blame avoidance, rather than clients’ needs, primarily drive decision‐making. In the field of Adult Guardianship, it has been suggested that organisational risk avoidance may be motivating applications for substitute decision‐makers, unnecessarily curtailing clients’ rights and freedoms. However, the absence of research examining the operation of risk within Guardianship decision‐making inhibits verifying and responding to this very serious suggestion. This article draws on semi‐structured interviews conducted with 10 professionals involved in the Victorian Guardianship system, which explored how issues of risk are perceived and negotiated in everyday practice. Risk was found to be a complex and subjective construct which can present both dangers and opportunities for Guardianship practitioners and their clients. While a number of participants reported that Guardianship might sometimes operate as an avenue for mitigating the fear and uncertainty of risk, most participants also valued positive risk‐taking and were willing, in their clients’ interests, to challenge conservative logics of risk. These findings highlight the need for further research which examines how service providers and policy makers can create spaces that support open discussions around issues of risk and address practitioners’ sense of fear and vulnerability.     

Public expenditure costs of carers leaving employment in England, 2015/2016

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as “replacement care” to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.