Conference Programme, Abstracts & Papers

Session 6B - Chronic Pain, Caregivers and the Illness Community
Chair: Sherah Wells

The Illness Community: Definitions and Uses of Community in Australian Illness Memoirs, Survivor Accounts and Support Group Resources
Amanda Nettelbeck
School of Humanities, University of Adelaide, Australia

In Australia, as in the West more widely, the illness memoir has emerged as a burgeoning sub-genre in the field of published autobiography and non-fictional literature as more people are living with and surviving the complicated, traumatic experience of diseases such as cancer. In recent years these narratives have drawn much discussion from scholars in the medical humanities for the various ways in which they engage with disease not so much in pathological or diagnostic terms, but in terms of its effects on concepts of self, personhood and the social body.
Not surprisingly, many illness narratives pay attention to the personalised story of illness and its transformative effects for the writer/speaker. In his study The Wounded Storyteller, American sociologist and cancer survivor Arthur Frank identifies the story of self-transformation through illness in terms of a ‘quest’ narrative, in which the ill person can, ultimately, rise above illness to affirm a powerful, if altered, sense of self. Useful as this may be, he also warns that the metaphor of the personalised quest may run the risk of isolating ‘those who fail to rise out of their own ashes’.  The personalised metaphors of triumph over illness, he suggests, ‘can be powerful means to healing. But generalised metaphors, offered as story-lines for others’ self-stories, are dangerous. The Phoenix does not mourn what lies in its ashes … [but] human illness …. Always returns to mourning. The boon is gaining the ability to mourn not only for oneself, but for others’.
Clearly, the social implications of the illness experience are as important as the individualised ones, yet seem to have less attention in the survivor literature in which a ‘quest’ narrative predominates. Narratives that grapple with issues about the community of the ill articulate a different, more outward-directed set of concerns than do the narratives that focus primarily on individual transformation. Those who are participants in a community of illness might share the idea of health ‘as an artificial condition’, in the words of Australian historian and illness survivor Inga Clendinnen, but are also rewarded in all kinds of ways by their membership.
Drawing on Australian examples of illness memoir, survivor accounts and support group resources, this paper will explore some of the ways in which the idea of an illness ‘community’ is conceived and utilized.

Love Medicine for the Dying and their Caregivers: The Body of Evidence
Dorothy Lander* and John R. Graham-Pole**
*Department of Adult Education, St. Francis Xavier University, Antigonish, Nova Scotia, Canada
** Director of Pediatric Palliative Care, Department of Pediatrics & Haven Hospice, Gainesville, Florida, USA

I know tricks of the mind and body inside out without ever having trained for it,
 because I got the touch. . …I got secrets in my hands that nobody ever knew to ask. …
The medicine flows out of me. The touch.  
(Louise Erdrich, Love Medicine, 1984, p. 189)

We present a bodyof research evidence for the application of love medicine (defined as embodied loving service) to end-of-life (eol) care, which unfolds through the storied relationships between the dying and their personal and professional caregivers.
Love medicine originates in the sacred aboriginal healing art that features the physical/spiritual touch of a shaman/caregiver as an imperative force to bind people and cultures together. As co-presenters—professional (doctor) and familial (wife) eol caregivers—we introduce the body of arts-based, narrative and clinical evidence for love medicine as eol care. We make our conclusions on the basis of several applications of Appreciative Inquiry (AI), a practitioner research methodology, to our professional and personal practice, focused on the life-affirming experiences of the dying, the bereaved, and their caregivers.
In this context, AI is a narrative and healing art that epitomizes love medicine in both the “taking” of a clinical history from the dying person and/or family (evidence-based, biomedical model) and the “building” of a narrative history and binding relationship between story teller and story listener (narrative-based, experiential model).
Our witness to the healing of the dying and their personal and professional caregivers through story and touch, coupled with the increased heart rhythm synchronicity and oxytocin (“love hormone”) secretion accompanying the experience of such positive emotions as appreciation and care, build a persuasive and scientific body of evidence for the power of love medicine as eol care.

The Lived Experience of Older People who Suffer Chronic Pain
Beatrice Sofaer
Clinical Research Centre for Health Professions, University of Brighton, Brighton, United Kingdom

Background
Many older people suffer pain severe enough to interfere with their normal functioning. The specific issues of older people with chronic pain have had little acknowledgement in the world of pain research. They appear to have little or no information on how to improve the quality of their lives or on resources available to them. It is important for health professionals and researchers to hear the experiences of older chronic pain sufferers from their own perspective.

Aim of study
This qualitative study set out to gain insights into older people’s perceptions about the effect of chronic pain on their lives and how they manage it. We aimed to ascertain from older people their lived experience of chronic pain, including the practical, physical and psycho-social limitations they faced and the strategies they used to deal with them.

Method
A qualitative approach to generating data was chosen using unstructured interviews. 63 people ranging from 60-87 years of age participated in the study and were interviewed in their own home.  Audio-tapes were transcribed verbatim. The material was coded and collapsed into themes.

Results
Four themes emerged: 

• The desire for independence and control
• Adaptation to a life with chronic pain
• Self-protection of wellbeing
• Relationship issues

Selected quotations from the participants will be used to illustrate the experiences of the participants. Understanding chronic pain sufferers from their own perspective may have important clinical implications. The interview data informed the development of a booklet “Pain in Later Years-practical ideas to help you cope” designed to meet the needs of older patients with chronic pain.