Debbie Horsfall

Circles of care: should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Increasing Operational Effectiveness in UN Peacekeeping Toward a Gender-Balanced Force

In this article, the authors argue that an increased percentage of female military personnel on UN peacekeeping operations is beneficial to operational effectiveness. They establish a case for a greater proportion of female service personnel that is based on three main premises: (1) a force adequately representative of female service personnel in peacekeeping operations will combat sexual misconduct perpetrated by some male soldiers, (2) peacekeeping is a task of great consequence and is best served by a force representative of both genders, (3) a greater proportion of female military personnel engenders trust and improves the reputation of peacekeepers among local populations. Literature reviews, including media reviews, research, and policy reports compiled by the Australian Defence Force (ADF), other Western militaries, and the United Nations, inform the above assertions and are augmented by research data from interviews with female personnel from the ADF.

Bringing our dying home : how caring for someone at end of life builds social capital and develops compassionate communities.

Abstract In this article we discuss the ‘bringing our dying home’ research project which contributes to an understanding of caring at end of life (EOL) as potentially increasing social networks and community capacity. The main aims of the research were to illuminate the quality and effect of informal caring networks that are established, or strengthened, as a result of caring for a person dying at home and to understand how being involved in such a caring network impacts family, friends and the wider community. Using photo voice and network mapping in focus groups and interviews we collected 94 visual and oral narratives of caring and support. We found: people who engaged in acts of resistance to the Western expert-based approach to EOL care; that carers successfully mobilised and negotiated complex webs of relationships; and, that embodied learning about caring contributed to the development of social capital and compassionate communities.

Identifying changes in the support networks of end-of-life carers using social network analysis

End-of-life caring is often associated with reduced social networks for both the dying person and for the carer. However, those adopting a community participation and development approach, see the potential for the expansion and strengthening of networks. This paper uses Knox, Savage and Harveys definitions of three generations social network analysis to analyse the caring networks of people with a terminal illness who are being cared for at home and identifies changes in these caring networks that occurred over the period of caring. Participatory network mapping of initial and current networks was used in nine focus groups. The analysis used key concepts from social network analysis (size, density, transitivity, betweenness and local clustering) together with qualitative analyses of the groups reflections on the maps. The results showed an increase in the size of the networks and that ties between the original members of the network strengthened. The qualitative data revealed the importance between core and peripheral network members and the diverse contributions of the network members. The research supports the value of third generation social network analysis and the potential for end-of-life caring to build social capital.

Disrupting edges – opening spaces: pursuing democracy and human flourishing through creative methodologies

In this paper, we explore how the use of critical creativity as methodology can democratise, and enliven, both process and product of qualitative research. This, we believe, is important if we are concerned with inclusive, collaborative research which aims to change the material circumstances of peoples lives and, simultaneously, nurture the human flourishing of participants in the research. One of our concerns is to find ways which enable more people to be more fully involved in the processes of such research and to speak, and be heard, thus enlarging conversations for change. This can be achieved, to some extent, by using the creative arts, intuition, performance, imagination and the wisdom of the body. Here, we use three examples from our practices as critically creative social researchers to explore and illustrate these themes in addition to offering ideas for researchers wishing to enlarge their practices.

Everyday practices of exclusion/inclusion: women who have an intellectual disability speaking for themselves?

This article discusses a small in-depth research study with five women who have an intellectual disability. Recognising the potential limitations of narrative approaches an inclusive arts-based methodology, supplemented with semi-structured interviews, and was employed to enable the women to speak for themselves about issues that were of interest to them. Thematic analysis of the data showed that the women experienced practices of social and emotional exclusion, and inclusion, in their everyday lives. While disappointing, this is not surprising. Of particular interest to the researchers were the women’s strategies for living with, and sometimes resisting, such practices. We suggest that further research which elicits such resistant practices and working with women to strengthen them could be useful for people interested in notions of inclusion.

Working together–apart: Exploring the relationships between formal and informal care networks for people dying at home

Abstract Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying persons home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

Informal caring networks for people at end of life : building social capital in Australian communities

The care of a person living at home near the end of their life is predominantly provided by family carers with the support of health services such as palliative care. In addition, informal caring networks also contribute at times to the support provided to the dying person and their carer. In this way, these networks can promote social capital in the communities from which they are drawn. This social approach to end of life care enhances community capacity to provide support to those dying at home and their carers. This article examines relevant published literature to explore the conceptual foundations of informal caring networks, examining the place of social capital and community development in the provision of end of life care at home, particularly in the Australian context.

Developing death literacy

Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options. People, and communities, with high levels of death literacy have context-specific knowledge about the death system and the ability to put that knowledge into practice. Positioned within a public health framework, death literacy is considered an outcome of peoples experiences of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and communities can use for their own benefit strengthening their capacity for future caring. This purpose of this paper is to explore the concept of death literacy using the evidence from a 6-year research project. We do this by examining how it corresponds to, and differs from, existing concepts and practices such as death education, health literacy, and community development. Our aim is to introduce new thinking into public health approaches to palliative care, offer practice development pathways in this arena and propose that death literacy offers a useful conceptual framework for both describing and understanding the outcomes of a public health approach to palliative care.

Rights to research : utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.