Exploring care relations in later life: disentangling notions of care and choice

The experience of later life varies widely and is often framed in terms of the active lifestyles of the Third Age and the frailty and abjection of the Fourth Age. This thesis sought to understand how the concepts of care and choice are enacted, experienced and interrelated in the context of both informal and formal care in later life and how older people themselves, their families and significant others understand and experience these concepts. The discourse of personalisation that dominates care services has led to an emphasis on individual choice, control and independence so that those in need of care are faced with what has been described as the ‘logic of choice’, a focus on individual responsibility rather than care. Adopting a Feminist Foucauldian theoretical approach and drawing on Tronto’s (1993) ethic of care, this thesis explores the experiences of older people and their informal carers through dialogical narrative analysis. The stories begin with the recognition by individuals that there is a need for care and how this need is met through negotiations with families and significant others. As needs increase the physical and logistical limits of informal care by individuals are reached, often leading to a need to ‘choose’ formal care. Rather than impacting solely on the care recipient, formal care is shown as being an experience that is shared with informal carers. Indeed, the participants depict how informal care continues alongside formal care and how the boundaries between them become blurred. I argue that a binary division between actively making choices and being a passive recipient are not appropriate to understandings of care. By disentangling the notions of care and choice this thesis explores the extent to which these concepts are relevant to the experience of older people in specific care situations.

Information and behavioural instruction along the health-care pathway:the perspective of people undergoing hernia repair surgery and the role of formal and informal information sources

Provision of information and behavioural instruction has been demonstrated to improve recovery after surgery. However, patients draw on a range of information sources and it is important to establish which sources patients use and how this influences perceptions and behaviour as they progress along the surgical pathway. In this qualitative, exploratory and longitudinal study, the use of information and instruction were explored from the perspective of people undergoing inguinal hernia repair surgery. Seven participants undergoing inguinal hernia repair surgery were interviewed using semi-structured interviews 2 weeks before surgery and 2 weeks and 4 months post-surgery. Nineteen interviews were conducted in total. Topic guides included sources of knowledge, reasons for help-seeking and opting for surgery and factors influencing return to activity. Data were analysed thematically according to Interpretative Phenomenological Analysis. Participants sought information from a range of sources, focusing on informal information sources before surgery and using information and instruction from health-care professionals post-surgery. This information influenced behaviours including deciding to undergo surgery, use of pain medication and returning to usual activity. Anxiety and help-seeking resulted when unexpected post-surgical events occurred such as extensive bruising. Findings were consistent with psychological and sociological theories. Overall, participants were positive about the information and instruction they received but expressed a desire for more timely information on post-operative adverse events.

The professional role of breast cancer nurses in multi-disciplinary breast cancer care teams

Since the 1970s breast cancer services have witnessed considerable changes in the management of patients. One significant change was the introduction of specialist core personnel, including the breast care nurse (BCN). The role of the BCN has been gaining credence rapidly in the British NHS and this service is perhaps the paradigm of care for other services. With the lack of specific evidence of the role of specialist nurses in the breast care team, the current study aims to explore this area by in-depth interviews with core team members, and observations of 16 multi-disciplinary teams in England. The study explores the following themes: Nurses' unique informal management leadership role in ensuring the co-ordination, communication and planning of the team work; nurses' innovatory role in making the bureaucracy respond to patients and their relatives needs; nurses supportive role in the provision of expert advice and guidance to other members of the team; nurses confidence and humour in well-performing teams; and the limitations of the professional role of the breast cancer nurse. This study indicates that there is evidence that the BCN is practicing at an advanced level of practice. However, there is a severe lack of evidence-based description of that advanced practice. Cancer nurses including the BCNs should develop and participate in programmes of research in line with cancer legislation in order to build an evidence base that ultimately supports their unique role. © 2004 Elsevier Ltd. All rights reserved.

Pre-conception care : current practice and methods of provision

This thesis examines the present provisions for pre-conception care and the views of the providers of services. Pre-conception care is seen by some clinicians and health educators as a means of making any necessary changes in life style, corrections to imbalances in the nutritional status of the prospective mother (and father) and the assessment of any medical problems, thus maximizing the likelihood of the normal development of the baby. Pre-conception care may be described as a service to bridge the gap between the family planning clinic and the first ante-natal booking appointment. There were three separate foci for the empirical research - the Foresight organisation (a charity which has pioneered pre-conception care in Britain); the pre-conception care clinic at the West London Hospital, Hammersmith; and the West Midlands Regional Health Authority. The six main sources of data were: twenty five clinicians operating Foresight pre-conception clinics, couples attending pre-conception clinics, committee members of the Foresight organisation, staff of the West London Hospital pre-conception clinic, Hammersmith, District Health Education Officers working in the West Midlands Regional Health Authority and the members of the Ante-Natal Care Action Group, a sub-group of the Regional Health Advisory Group on Health Promotion and Preventive Medicine. A range of research methods were adopted. These were as follows: questionnaires and report forms used in co-operation with the Foresight clinicians, interviews, participant observation discussions and informal meetings and, finally, literature and official documentation. The research findings illustrated that pre-conception care services provided at the predominantly private Foresight clinics were of a rather `ad hoc' nature. The type of provision varied considerably and clearly reflected the views held by its providers. The protocol which had been developed to assist in the standardization of results was not followed by the clinicians. The pre-conception service provided at the West London Hospital shared some similarities in its approach with the Foresight provision; a major difference was that it did not advocate the use of routine hair trace metal analysis. Interviews with District Health Education Officers and with members of the Ante Natal Care Action Group revealed a tentative and cautious approach to pre-conception care generally and to the Foresight approach in particular. The thesis concludes with a consideration of the future of pre-conception care and the prospects for the establishment of a comprehensive pre-conception care service.

Optimising primary care for people with dementia

This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services - including general practice and pharmacy - with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.

'There's a hell of a noise':living with a hearing loss in residential care

Background: hearing loss is common in older age. Research with older people in residential care settings has identified high prevalence of hearing loss and low uptake of hearing aids. Hearing loss in these settings is associated with reduced social engagement. Although hearing aids remain the default treatment for presbyacusic hearing loss, these are not well used. We do not know what other modifiable factors contribute to communication problems for older people with hearing loss living in residential care. Objectives: to explore the factors affecting communicating with a hearing loss in residential care. Methods: an ethnographic study in two residential care homes comprised 19 sessions of observation, and in-depth interviews with 18 residents. Observations explored communication behaviour in everyday interactions, including mealtimes, structured groups and informal group activities. Interviews were informed by the observations and identified reasons for these behaviours and communication preferences. Observational data were recorded in field notes and interviews were audio-recorded and transcribed. Analysis was conducted using constant comparison methods. Results: hearing loss affected whether residents were able to access social opportunities. Two key themes influenced this (i) contextual issues compounded communication difficulties and (ii) environmental noise restricted the residents' communication choices. Problems were observed at every mealtime and during formal and informal group activities. The use of hearing aids and access to hearing services did not improve social engagement. Conclusions: environmental and social factors are key to maximising communication opportunities. Improvements to communication in residential care settings could be based on changes in these with input from residents and staff. Further work is needed to develop effective communication strategies in residential care.