Life as a care home resident in later years: “living with care” or “existing in care.”

Despite a widely accepted view of the importance of understanding experience from the point of view of the individual using services in modern western society, there are relatively few studies that have explored day-to-day living in a care home from the older person’s perspective. This study aimed to present the voice of the untold stories of care home residents through an interpretative study that was informed by a biographical approach and narrative method. Eight older people who lived in four different care homes in England participated in a sequence of up to eight narrative interviews over a six month period.

Through the process of listening to, retelling and interpreting the residents’ stories the resident world was explored. There were three stages to the interpretative process that focused on:- developing a naïve or surface understanding to acquire a sense of the whole sequence of a participant’s interviews; a structural analysis that examined the interviews to investigate what the text said and how it was said; and a critical in-depth examination of the interpretation within the wider social context.

The interpretation revealed the unique way that each participant lived in a care home. These older people worked hard to reconstruct their life following the move to a care home and as they lived there. Though the residents were limited by physical, functional and cognitive problems, they developed strategies with the aim of influencing the life that they lived within a care home. Where they were able to implement those strategies they reconstructed their life in ways whereby they ‘lived with care.’ In this sense they were active biographical agents shaping this phase of their life. This is an alternative biography, to that of older people ‘existing in care’ as an outcome of care received.

This thesis provides new insights into the residents’ world. The overriding conclusion that can be drawn from these stories is that these older people were trying to live as active biographical agents who were instrumental in shaping their own life. They were able to do this to a greater or lesser extent and the conceptual model of biographical living that has been developed from the resident stories provides a framework to depict the complex interactions that shape an individual’s experience in this environment. An inherent feature of this model is recognition that residents can be active agents throughout their lives in care homes. In summary, residents’ desire to ‘live with care’ and this is not only possible, it is achievable.

Living Bereavement: An Exploration of Health Care Workers’ Responses to Loss and Grief in an NHS Continuing Care Ward for Older People

The continuing care for older people is an important but often overlooked area of health care. This thesis is concerned with how care staff work with residents and their relatives in an NHS continuing care ward. It focuses on the care staff’s perceptions and responses to the losses experienced by the residents and their families in their care. The research is rooted in a work based education project and the theme of loss was chosen by the participating care staff who felt it was central to their work. They coined the phrase “living bereavement” meaning the complex responses and grief reactions of those experiencing and bearing witness to the multiple losses endured in continuing care environments.

The literature review suggested that the body of knowledge related to loss in continuing care is fragmented and the research aimed to explore the relationship between some of the fragmented issues. For example, by blending social and psychological methods it was possible to research the interaction between the cultural and emotional aspects of loss in continuing care. Psychoanalytically informed data collection and analysis strategies were built into the methods so that formulations could be made about the role of emotions and psychological defences in shaping the customs and practices on the ward.

A key message from the thesis is that there is an intense emotional demand in care work related to loss and grief in continuing care environments. This demand consists of the care staff’s own feelings as well as their experience of other people’s emotional responses. I propose that care staff used psychological defences to avoid or gloss over aspects of the emotional demand that stirred up unbearable emotions and feelings that are usually considered unacceptable, particularly for people in care work. Social systems in the organisation of work supported the psychological defences and prevented any changes in working with emotions becoming custom and practice in the everyday work.

The study makes its unique contribution by articulating the nature of the emotional demand, psychological defences and social systems that are related to having close contact with very dependent older people living and dying in continuing care environments. The thesis concludes by making specific recommendations about integrating the emotion work related to living bereavement for the participants in the study. Broader considerations are also suggested for similar continuing care environments such as care homes.

Cheryl Holman
City University

Dementia and Intersectionality: Exploring the experiences of older people with dementia and their significant others

The aim of this thesis is to demonstrate that new and varied views of dementia surface when the concept of intersectionality is applied to dementia research; and that these perspectives pose challenges to our assumptions about what it is like to have dementia. Grounded theory research from a feminist and anti-oppression perspective was undertaken to explore the question of the relationships between older people‘s experiences of dementia and the intersections of gender, class, ‘race’, and ethnicity. During nine months of field research in Canada, interviews, participant observation, photography, and focus groups were undertaken with eight older people with dementia and their significant others. The participants ranged from multiply marginalized to multiply privileged on the basis of their ‘race’, ethnicity, gender, and class. The grounded theory arising from this research explains the complex nature of the relationships between the subjective experiences of older people living with dementia and the intersections of ethnicity, ‘race’, class, and gender. I argue that there is a connection between social location and lived experiences of dementia; and that these relationships can be observed across and within the categories of experiencing, othering, and theorising. Experiencing captures the diversity of older people’s experiences of dementia, which range from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’: these views are associated with social location, with the multiply privileged older people holding the most negative views of dementia and the multiply marginalized older people dismissing the significance of dementia. Othering refers to the marginalisation to which people with dementia are subject: it is shown to be a marked feature of life with dementia and to be connected to social location, with the multiply privileged people being othered more often as a result of their dementia status; the more marginalised participants demonstrating resilience (as an acquired characteristic); and all being subject to both othering practices and enabling behaviours enacted by members of their social worlds, such as their significant others. The theorising category refers to people with dementia being active meaning makers who theorise about dementia: the outcome of this intellectual activity is shown to be related to social location, with the most privileged participants being the only ones to view dementia as a brain disease; and all others making strategic use of the normal aging theory to avoid marginalisation due to dementia. The result of the theorising done by older people with dementia is a dialectical theory of dementia that positions dementia as a bio-psycho-social phenomenon, disrupts the false dichotomy between normal and pathological, and integrates emic and etic perspectives on dementia.

The retirement process: a developmental stage in the lifecourse of ballet dancers

Retirement in ballet dancers receives relatively little attention in psychology and sociology. The purpose of this thesis is to investigate the experiences of retirement and career transition in ballet dancers, from a life course perspective. The study is based on the assumption that retiring from a professional dancing career can be a fairly difficult process for those who identify themselves highly with their role. It aimed at exploring the different factors influencing this process, and the ways in which they account for either a positive or problematic transition. Drawing upon existing life span and transition models (Erikson, 1963; Levinson et al. 1978; Schlossberg, 1981) as well as from sport literature (Taylor & Ogilvie, 1994), and social gerontological theories (Atchley, 1989; Cumming & Henry, 1961; Havighurst, 1963) the study explored the meaning of retirement for ballet dancers, whilst also critically examining the usefulness of these existing models.

The study was divided into three phases. All three phases used an idiographic approach and the methods of analysis used were: elements of Interpretative Phenomenological Analysis (IPA) and tenets of Grounded Theory. Through hermeneutic data gathering the study analysed semi-structured interviews from 14 international ballet dancers. The results from the three phases of analysis identified four main themes and a range of sub-categories. These were compiled into a theoretical Model, described and applied to the findings to illustrate their theoretical utility. The four main themes emerging from the analysis were:

• ‘Reasons for Retirement’,
• ‘Sources and Types of Support’,
• ‘Coping Within & Without’, and
• ‘Floating Resolutions: The Sequels’.

These themes provided a framework for the analysis of the retirement experience of the individual ballet dancer as it is experienced within the individual’s life world. The ‘Contextual Factors’, ‘Personal Resources’ and ‘Emotional Responses’, which illuminated the further complexity of participants’ meaning making around the process, were also identified as being central elements in the change. The social context in which the transition occurred influenced the way and the types of support sought by each individual. The responses of the individuals were analysed at three points of the transition process: the time leading up to the disengagement from the ballet world, the event itself, and the period of re-engagement with a new role and new life. It was found that the individual can experience different responses, which necessitate different types of support.

Different types of outcomes were identified with some ex-ballet dancers engaging with similar professions to the dancing career as ‘re-makers’, and others leaping into different roles as ‘exposers’. For some, a link to the past seemed to remain part of their newly formed identities. Finally the thesis discusses some of the practical implications for the future career development and career guidance needed. Accepting the change, adapting skill-based and recognising the transferability of skills previously acquired can assist former dancers and other individuals who face phases of transitions throughout their life span.