Kathleen McLoughlin

INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness.

BackgroundFor most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT).DesignThe INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0–2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers.DiscussionThe INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally.Trial registrationISRCTN18400594 18th February 2015.

Dying to talk: unsettling assumptions toward research with patients at the end of life.

Following in the steps of researchers such as Saunders (1958), Kubler Ross (1970b) and, more recently, Donnelly and Donnelly (2009), I wanted to learn by listening to the patient. I wanted to hear the patient’s story to enable me to understand how they felt about their transition to palliative care services and how they saw their future. While similar in my intention to these visionary researchers, I was unquestionably different. With a background in mental health research and quality and risk, my interest in research of this nature was questioned by some ethics committees and viewed with an air of suspicion by some health professionals working in palliative care. As a non-practitioner, was it ethical for health professionals who seek to protect their patients, to allow me to ask the dying what it is like to die? I am not alone in this situation. There seems to be “something ethically unique and uniquely challenging” (Casarett, 2000) about palliative care research and indeed such challenges are well documented (Jordhoy et al., 1999; de Raeve, 1994). However, this raises questions about whether or not health professionals now need to critically reflect on their attitude to conducting research with patients receiving palliative care. What assumptions do health professionals make about narrative research with the dying and what evidence is available that might prompt reconstruction of these assumptions? What assumptions did I have, as an eager researcher working outside the clinical field, regarding my capacity to engage with the dying? What can we learn by listening. . .to the patient. . .the researchers. . .ourselves? Loosely drawing on Fook’s (2007) model I seek to examine these assumptions by critically reflecting on my experience negotiating access to, and eventually talking to, palliative care patients. This essay adds to a body of similar literature (Cannan, 1989; Kellehear, 1989; Young & Lee, 1996) whereby the researcher stands back and tries to make sense of their experience, both to enable personal and professional growth and also to inform those contemplating undertaking research in a particular area, of the potential challenges that only experience can reveal. As Bell and Newby (1977) highlight, such accounts of the fieldwork involved in research are “at least as valuable, both to students . . . and its practitioners, as the exhortations to be found in the much more common textbooks on methodology” (p. 9). I have often been asked how and why I came to be in palliative care. There is often an assumption that there is a deep rooted reason for people to embark on their work with the dying. Was it because of a positive or negative personal experience with death and dying in my own life? Or maybe a spiritual calling of some nature? I can honestly say that none of these reasons brought me to my research and my story is quite mundane and uninspiring. At the time I was working as a researcher for mental health in a clinical audit and research service. I was asked to become involved in a palliative care needs assessment as a researcher to aid the completion of the work within a defined timeframe. I am ashamed to admit that my understanding of palliative care as I commenced this involvement was limited, to say the least, and I recall well the day I sat at my desk and Googled the term “palliative care.” As the needs assessment continued, my interest in the area grew significantly and I was particularly concerned that the high level of fear and stigma associated with palliative care Address correspondence and reprint requests to: Kathleen McLoughlin, Milford Care Centre, Castletroy, Limerick, Ireland. E-mail: kemcloughlin@gmail.com Palliative and Supportive Care (2010), 8, 371–375. # Cambridge University Press, 201

Analysis of library associated information needs of staff in a specialist palliative and gerontological care centre in Mid‐West Ireland

BACKGROUND Milford Care Centre is a major centre for specialist palliative and gerontological care in the Mid-West of Ireland. In August 2008, a Librarian was employed to support the information, research, teaching and professional development needs of staff and students. In planning associated with this role, it was necessary to undertake an analysis of the information needs of staff. OBJECTIVES (1) To understand the information needs of staff with regard to the new Library and Information Service. (2) To identify current access to and levels of skill in information literacy and ICT. (3) To ascertain the need for training in those skills. METHODS A web-based questionnaire was disseminated in November by email and printed copies were left at other locations. RESULTS Assistance with obtaining journal articles was rated most highly by respondents as being an important service. Eighty-three per cent indicated that they did not have access to online health databases. Small group classes were considered the preferred method of providing training. Afternoons were also considered more convenient for visiting the library. CONCLUSION The results will be used to plan the development of the library with a better insight of users needs and assist us to utilise resources more effectively.

Walls, wisdom, worries, and wishes: Engaging communities in discussion about death, dying, loss, and care using Café Conversation

This paper reflects on the adaptation of the World Café concept to engage with members of the public in Compassionate Communities Café Conversation, focussing on enabling people to understand the importance of thinking and talking about the end of life. The approach enables people to come together to share their experience and ideas, wisdom, worries, and wishes. The seven design principles of the World Café are central to the process, together with the sharing of resources developed to engage people in discussion as well as practical activity. This paper outlines the preparation, presentation, and pilot evaluation of the Compassionate Communities Café Conversation experience in two towns in the Mid-West of Ireland. The experience and findings suggest that this approach offers a potentially very useful framework for use by others as part of a health promoting approach to palliative care.

OA39 Digging a hole… planting a seed… water it and watch it start to grow, grow, grow

Background Milford Care Centre’s Compassionate Communities Project uses a seed grant scheme to engage with communities around illness, dying, death and bereavement. The scheme, now in it’s 3rd cycle strives to inspire and support the work of local groups, organisations and individuals who wish to mark in some tangible way their response to the universal realities of death, dying, loss and care as lived and experienced by those living within their communities. A key requirement for the receipt of a grant is that the level of funding must be matched either in cash or in kind. Aim This presentation will report on the projects supported, describing the short and medium term impact they have had on the local community. Method A short film will showcase the projects. Qualitative interviews were conducted with all grant recipients to determine the impact of the seed grant at a community level. Results Seed grants were used in a variety of ways, for example: Supporting a community group to develop a reflection space Supporting a youth project to explore what death, dying, loss and care means to service users through the creative arts. Supporting a library to develop a bereavement information ‘resource’. Supporting local groups to run a community event aimed at increasing awareness and knowledge about ‘healthy’ ways of coping with loss and grief. Supporting those seeking practical ways of providing support to other living with illness and loss. Conclusions The seed grant scheme offers a low cost, high impact approach to working with communities.

WA40 The good neighbour partnership: why do we need it? who is going to do it? how on earth are we going to evaluate it?

This one-hour symposium considers Milford Care Centre’s Compassionate Communities Good Neighbour Partnership and it’s evaluation by an international team, led by Maynooth University and funded by the All Ireland Institute of Hospice and Palliative Care, The Irish Cancer Society, The Irish Hospice Foundation and Milford Care Centre. The symposium will be divided into three sections: 1. The Good Neighbour Partnership: Why do we need it? In this section we will describe the findings from a recent scoping study to determine the social and practical needs of community dwelling adults (and their families) living with advanced life limiting illness at home. We will consider the rationale for specialist palliative care services, working with community groups, to lead the development of a volunteer-based social model of care to address unmet need. 2. The Good Neighbour Partnership: How do we recruit and train volunteers? We will share our process and experience of recruiting and training 15 Compassionate Communities Volunteers to assess unmet social and practical need, and to mobile the person’s circle of community to meet those needs. An understanding of the motivating factors of volunteers will be shared. 3. The Good Neighbour Partnership: How on earth are we going to evaluate it? Here we describe the INSPIRE study – Investigating Social and Practical Supports at the End of life. An exploratory delayed intervention randomised controlled trial (framed by the MRC Framework for Complex Interventions) to assess the feasibility, acceptability and potential effectiveness of the Good Neighbour Partnership.

OA37 Compassionate classrooms: supporting teachers to support children living with grief and loss

Background Milford Care Centre’s social work service is often contacted by teachers following a death within the school community. The team recognised the need to engage in a more proactive, health-promoting manner to help teachers normalise the experience of grief and loss, empowering them to provide support to pupils following bereavement. Aim To develop and evaluate a brief intervention for teachers, as part of Milford Care Centre’s Compassionate Communities programme, to support children experiencing bereavement. Methods A five-hour experiential workshop was developed and piloted with (1) a group of teachers and (2) staff working with early school completion programmes across the City. The teacher workshop was evaluated using a pre/post design measuring death anxiety and self-reported confidence. A qualitative evaluation, of both workshops will be presented from both the facilitator and participant perspective. Results The pilot highlighted that the intervention is acceptable and demonstrated both a significant reduction in death anxiety and improvement in self-reported confidence for teachers who participated. Conclusions The Compassionate Classrooms: Working with Grief and Loss intervention can reduce death anxiety and improve teachers’ confidence. The intervention will be shared with the audience for local adaptation.

OA41 How can we support people living with death, dying, loss and care using animation? social workers reflect on the compassionate communities ‘let’s talk’ films

Background Milford Care Centre’s Compassionate Communities Project has developed a series of animated films – The ‘Let’s Talk’ Series. These films are used by the project to encourage people to have think about having difficult conversations about illness and death. The films are available on the project website, via You Tube and are shown during Café Conversations as part of the Compassionate Communities Project. More recently, members of the Specialist Palliative Care Social Work department have been using the films during their direct work with patients and their families. Aim This presentation aims to introduce participants to the Let’s Talk film series and describe the learning from social workers who have used the films at home, and in the inpatient unit, with patients, their partners and their children. Method Social workers were interviewed, sharing their experience and reflection on using the animated films as a practice tool. Results A number of case studies will be presented to describe the use and impact of the films in practice. Conclusion The films are a very useful addition to the social work toolbox. Guidelines for their use in practice will be presented.

Response to ‘Compassionate community networks: supporting home dying’ by Abel et al

I am delighted to read Abel et al s conceptual paper regarding a social model of care, using a compassionate communities framework. As the paper has outlined, Milford Care Centre, Limerick, Ireland, commenced a Compassionate Communities pilot …