Amanda Bingley

Developing narrative research in supportive and palliative care: the focus on illness narratives.

The phenomenon of the ‘illness narrative’ is well-documented, in the last 25 years, of increasing interest to researchers in health and social sciences. Personal stories about the experience of facing the end of life also have an established history of particular relevance for palliative care clinicians. In this article, we review and describe a range of narrative analysis approaches that may be of use in palliative care. In particular, we distinguish between qualitative analysis applied to narratives and narrative analysis as a method. We discuss the potential benefits and challenges in the use of narrative research methods as a means to deepen our understanding of patient, carer and health professionals’ experience, and to support improvements in end of life care policy and practice.

Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases:

This article reviews a sample of narratives written since 1950 by people knowingly facing death as a result of cancer and other diseases, in order to compare experiences and show how these relate to wider changes in practice in end of life care. Methods: A bibliographic search of libraries, archives, journals and internet sources located English spoken literature, including books, poems, newspapers, journal articles, diaries, and internet postings of writings by people facing terminal disease. Bibliometric and qualitative content analysis explored changing authorship, experiences, purpose in writing, and reported the impact on readers. Results: The initial search located a wide range of published and unpublished narratives, to which inclusion/exclusion criteria were applied, yielding 148 narratives by different authors since 1950. A purposive sub-sample of 63 of these narratives was reviewed. Discussion: Over the last half century there have been changes in both the volume of available literature and patterns of writing about end of life experience. Therapeutic benefits of writing are reported as a way of making sense of dying combined with a strong sense of purpose in sharing the story. There is a clear awareness of social needs when dying, along with issues of communication with medical staff, symptom control, realities of suffering, and spiritual aspects of dying. Differences are found in the nature and style of writing about cancer in comparison to other illnesses.

A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC)

Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education.

Place and wellbeing:shedding light on activity interventions for older men

ABSTRACT In the United Kingdom, one in five of the population is an older man, many of whom live alone. Loneliness and social isolation is a growing issue for many of these older men, one that has been associated with elevated blood pressure, poor physical health, increased mortality and mental ill-health, including depression, suicide and dementia. Lone dwelling and social isolation have tended to be viewed largely as issues affecting older women due to their greater life expectancy (LE), but the LE gap between men and women is closing, presenting new challenges for the health and wellbeing of older men. This is not unique to the United Kingdom. Yet whilst inclusionary social spaces and supportive social ties can be important for enhancing physical and mental wellbeing amongst older people, evidence suggests that lone-dwelling older men can experience greater difficulty in accessing effective social support, relative to older women. Understanding those spaces of communal activity that are likely to be successful in promoting health and wellbeing amongst older men is thus important if we are to improve their quality of life. In this paper, we draw on research with a ‘Men in Sheds’ pilot programme in the United Kingdom, to illustrate how everyday spaces within local communities might be designed to both promote and maintain the health and wellbeing of older men. In doing so, we aim to offer insights into how Sheds, as created and gendered spaces, may not only engage older men in ways that help to maintain their perceived health and wellbeing, but also provide sites within which older men can perform and reaffirm their masculinity.

‘Sandplay, Clay and Sticks’: Multi-Sensory Research Methods to Explore the Long-Term Mental Health Effects of Childhood Play Experience

Abstract In this contribution we discuss the advantages of using multi-sensory methodologies in our study into the long-term mental health effects of different kinds of childhood play space. Working with a small group of young people aged 16–21 years old; we used a multi-method approach including practical workshops where the young people took part in a day of woodland activities and artwork sessions. We argue that use of such practical methodologies is particularly appropriate in research with teenagers and young adults, helping to overcome their self-consciousness and supporting their need to explore and articulate memories, feelings and ideas.

From victims to actors : the role of children and young people in flood recovery and resilience

Following a series of recent devastating storms across England with large numbers of homes and businesses evacuated, and despite widespread consensus that further severe flooding is expected, a large section of the population continues to be excluded from developments in flood risk management. We argue that the absence of children and young people from assessments of both the effects of flooding and ways in which it can be mitigated, undermines the effectiveness and legitimacy of policy making. Drawing on in-depth participative research with two groups of flood-affected children and young people we show the range of ways in which they are affected by flooding, some ways they can be better supported, and then how their valuable experience can help shape positive change in policy and practice before, during and after floods. Children developed Flood Manifestos for Change in a direct challenge to their omission from flood governance. The Manifestos and the steps children took to advocate for them can be seen as acts of citizenship, highlighting the capacities of children and young people as flood actors, rather than flood victims.

Ageing playfully : a story of forgetting and remembering

ABSTRACT An increasing interest in exploring how digital innovation could support dementia care has been a leading research responding to e-health movements, from caregiving and medical perspectives. Little research has included perspectives of people with dementia; even fewer are concerned with the emotional side of the research experience per se. The aim of this case study is to open a space for a discussion of the impact that this process has on design researchers engaging in the area of dementia. Grounded in these two overlapping creative spaces, a methodology emerged that focused on adding design value to outcomes and to all stakeholders involved along the process. The Ageing Playfully project explored, through a series of playful workshops, the opportunities available for people with dementia to catalyse imagination and social interaction through co-design. Participating in Ageing Playfully were 12 co-designers with dementia, 2 healthcarers and 4 researchers from Lancaster University working in the areas of design, computer science and health studies. This paper recounts the experience of the design researchers as part of the team and constructs a narrative in which emerging methods together with personal experience are protagonists; a story that offers memories within the forgetful corners of the investigation.

Caregiver experiences, attitudes and perceptions about feeding toddlers and preschool children in Switzerland: a qualitative study

BackgroundYoung children depend upon caregivers to make healthy food and beverage choices on their behalf. Research to understand caregiver perspectives may help develop interventions to improve diets and offer new insights for healthcare professionals and future nutrition studies. The main study aim was to explore caregiver feeding experiences, with a focus on portion sizes and attitudes towards beverages, for the first time in Switzerland, and contribute to the European perspective in this field.MethodsInductive, qualitative study with purposive sampling of 19 male and female caregivers (low-high income, 20–46y) of children (1–5y) using in-depth interviews. The model, “Food Choice Process over the Life Course”, was used as a theoretical framework. Full transcripts underwent a thematic analysis. Key themes were developed from the data.ResultsKey themes were a) Rules and routines b) Tacit knowledge c) Explicit knowledge d) Managing. Rules about foods and beverages to encourage/limit were widespread. Participants struggled to explain how they portioned foods but offered volume-estimates of beverages portions. Perceptions about health effects of beverages influenced choices. Managing time and budget influenced purchases and meal preparation. There was good agreement with the theoretical framework.ConclusionsRules and routines reflected anti-obesity recommendations and food-choice values. Perceived health effects of certain beverages, cultural classifications of snacking and the influence of income and time highlight multi-level determinants influencing dietary choices about feeding young children. Health-care professionals may wish to consider these emergent themes when advising on early-childhood feeding. Future studies are required to understand more about the attitudes and perceptions of beverages in the diets of toddlers and preschooler, along with perceptions related to snacking behaviours.

“That’s where I first saw the water…” : mobilizing children’s voices in UK flood risk management

This article reports on a project, led jointly by Lancaster University and Save the Children UK, that used mobile, creative, and performance-based methods to understand children’s experiences and perceptions of the 2013–2014 UK winter floods and to promote their voices in flood risk management. We argue that our action-based methodology situated the children as “flood actors” by focusing on their sensory experience of the floods and thus their embodied knowledge and expertise. The research activities of walking, talking, and taking photographs around the flooded landscape, as well as model making and the use of theater and performance, helped to “mobilize” the children not only to recall what they did during the floods but also to identify and communicate to policy makers and practitioners how we can all do things differently before, during, and after flooding.

Silence as an element of care: A meta-ethnographic review of professional caregivers’ experience in clinical and pastoral settings:

Background: In interactions between professional caregivers, patients and family members at the end of life, silence often becomes more prevalent. Silence is acknowledged as integral to interpersonal communication and compassionate care but is also noted as a complex and ambiguous phenomenon. This review seeks interdisciplinary experience to deepen understanding of qualities of silence as an element of care. Aim: To search for published papers which describe professional caregivers’ experience of silence as an element of care, in palliative and other clinical, spiritual and pastoral care settings and to synthesise their findings. Design: Meta-ethnography: employing a systematic search strategy and line-of-argument synthesis. Data sources: PsycINFO and seven other cross-disciplinary databases, supplemented by hand-search, review of reference lists and citation tracking. No date range was imposed. Inclusion criteria focused on reported experience of silence in professional caregiving. Selected papers (n = 18) were appraised; none were rejected on grounds of quality. Results: International, interdisciplinary research and opinion endorses the value of silence in clinical care. As a multi-functional element of interpersonal relationships, silence operates in partnership with speech to support therapeutic communication. As a caregiving practice, silence is perceived as particularly relevant in spiritual and existential dimensions of care when words may fail. Conclusion: Experience of silence as an element of care was found in palliative and spiritual care, psychotherapy and counselling supporting existing recognition of the value of silence as a skill and practice. Because silence can present challenges for caregivers, greater understanding may offer benefits for clinical practice.