Seeing the bigger picture: Using the ‘Pictor’ visual elicitation method to explore roles and relationships in palliative care

Relational issues are a crucial aspect of the experiences of those close to the end of life, as the theme to this conference testifies. It is, however, challenging to explore such issues with those living with life-limiting illnesses and those who care for them – whether close family and friends or providers of professional care services. For the former, fatigue and other physical and psychological effects of illness can make an extended interview difficult. For lay and professional carers, the complex nature of often wide networks of support can be hard to reflect upon. These challenges are often compounded for all parties by the emotionally-charged nature of exploring such issues in an end-of-life context. In this keynote presentation, I will describe the use of a diagrammatic visual elicitation method called the Pictor Technique, which has been developed at the University of Huddersfield, UK. The method involves the creation of a “Pictor chart” in which roles and relationships are portrayed by the placing of arrow-shaped notes that represent those involved in the care of someone with palliative care needs. By considering examples from several studies using the method I will demonstrate its advantages in terms of enabling participants to direct and pace the interview, capturing details of complex networks of relationships, and disseminating findings to professional and academic audiences.

 Supporting decisions at the end of life: Relationality, care and choice

Dementia and Alzheimer’s disease has been the leading recorded cause of death in England and Wales since 2015. It was the third highest cause of death in Finland in 2017, and is the fifth leading cause of death globally. Finding ways to plan for dying with and of dementia is therefore an important dimension of both living with a dementia, and caring for a person with dementia. Yet talking about death and dying can be difficult, and the experience of cognitive impairment and declining capacity, makes it even more difficult. Building on my contributions to relational theory in Duties to Care (2017, Cambridge University Press), I will explore the challenge of supporting end of life decision-making by people with dementia and other cognitive impairments in the context of mental capacity law. I will draw on socio-legal empirical research from the Duties to Care project about the experience of caring for a person with dementia, and research from the Everyday Decisions project on how to support people with cognitive impairments to express their wishes, and make end of life choices about the social, medical and legal aspects of death and dying. I will argue that taking a relational approach to this challenging issue helps us to explore the multiple different levels of relationship and regulation that shape which choices about care at the end of life are available to people with impaired capacity. Through this analysis I will suggest social, interactional and legal strategies about how to ensure that everyone has the greatest opportunity to make choices that are meaningful to them, and to have these respected, at the end of life.

Making meaning in old age

I will depart from three research efforts that I have been involved in over the last years: 1.  A study of the lived experience of dementia, as it is seen by some informal carers/spouses. I find it extremely important to see and study this situation from a psychosocial standpoint, with the aim to improve quality of care and quality of life. 2. A study of a somewhat similar group of carers, - the nearest persons of individuals suffering from terminal illness (cancer) – how their trajectory proceeds, and what kind of assistance they require. 3. A methodological study of the “Sources of meaning and meaning in life” methodology, developed by prof T Schnell. My colleagues and I find this instrument, and the knowledge and theory that comes with it, promising for the purpose of understanding and coming to grips with major existential challenges (like dementia, and terminal illness). Finally, a significant part of my research life has been dedicated to studies of the coping potential of ritualizing during crises, and I will conclude in pointing to examples of relevant ritualizing practices

Caring for Aging and Terminally Ill  Relatives in Transnational Somali Families: Theological and Anthropological Reflections (panel)

How does living transnationally impact caring for aging and/or terminally ill parents and relatives in Somali Muslim migrant families? How do the cared for and the care taker make sense of Islamic teachings and cultural norms that guide parent- adult children relationships during times of illness and death in the context of their transnational family life with its complexities and tensions? This short presentation reflects on these questions drawing on ethnographic research among Somali families in different diasporic contexts in Egypt, North America, and Finland.   

Palliative care – an opportunity to respect every individual (panel)

The diversity in mother tongues spoken in any place indicates that there exists a similar diversity of views held about health and illness. In numerous publications ethnic minorities or migrants (often put together with refugees) have become the tokens of culturally sensitive caregiving. Unfortunately, such simplistic ‘minority medicine’ comes with stereotypes, static view of identity, and neglect of individual, social and economic contexts, pointed out by anthropologist Cecil Helman already in 2006. In my research I argue that in palliative care cultural competence is less about some culture-specific special knowledge, but merely a skill of being human to other humans.

Precarious migrant citizenship, transnational social vulnerability in old age? (Mis)recognition as dynamic in relations of care in families shaped by migration (panel)

It is commonplace for contemporary families to be transnationally spread, but the phenomenon is diverse and the dynamic of associated social vulnerabilities touching both migrant and non-migrant family members is complex. This presentation argues that the social vulnerabilities older people face in the context of transnational families are associated with the broader phenomenon of precarious migrant citizenship. My presentations identifies three key dimensions of (mis)recognition underpinning the inequalities in the trajectories of transnational care relations. I argue that unequal migrations produce social vulnerabilities for both migrant and non-migrant older people and that greater equality requires recognition of transnational family ties.