Roles and responsibilities in understanding, accepting and adapting to an uncertain chronic illness trajectory

Close, Helen (2004) Roles and responsibilities in understanding, accepting and adapting to an uncertain chronic illness trajectory. Doctoral thesis, University of Northumbria at Newcastle.

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Abstract

The aim of this qualitative study was to explore the lived experience of chronic illness during and beyond diagnosis within the context of relationships between patients, family carers and service providers. Findings focus on the ways in which people with chronic illness and their family carers became aware of the prognostic limits of medical information, and the psycho-social processes involved in managing the uncertainty inherent in the illness trajectory within a context of creating and maintaining relationships with favourite members of staff. This has implications for the current policy imperative for self-care and challenges the assumption that biographical support and self-care are mutually exclusive concepts. Findings suggest that it is necessary to combine the promotion of independence with recognition of the importance of continuity of carer across the illness trajectory. This has implications for the introduction of case managers for people with complex chronic illness.
Humanism was adopted as an organisational framework that called for primacy to be given to the voices of patients, children and family carers. Symbolic interactionism informed the interpretive premise that this study is only one representation of multiple realities, and grounded theory was used to guide the iterative process of data collection and analysis. Data were collected in two phases; phase one in a general hospital setting with stroke patients, phase two in a special school for physically disabled children with a variety of chronic illnesses. In phase one, observation and interviews were held with stroke patients (n = 9) and their family carers (n = 10) during the hospital stay and following discharge from hospital. Emerging themes influenced the design of a qualitative questionnaire used with service providers (n = 31) to explore contributions to care and interpretations of progress. In phase two the study was extended to explore perceptions held by physically disabled children (n =
12) in a special school setting and their informal carers (n = 16) about the lived experience of chronic illness. Observation and interviews were used with children, based on photographs they had taken. Data from service providers (n = 42) working within special education were collected using questionnaires.
Data taken from different diagnostic and age groups were compared to explore commonalities and differences in representations of chronic illness. Common themes emerged that cut across diagnostic groups and service responses to those groups. The themes are presented in this thesis as three interdependent psycho-social processes intended to manage the uncertainty inherent within the illness trajectory. The processes of understanding, accepting and adapting to uncertainty emerged as central categories. Chronic uncertainty was managed via processes of information management, making comparisons with others, making biographical comparisons with one's self, and maintaining continuity of carer. Findings contribute to increased understanding of the processes of care available to people coping with chronic illness within a multiprofessional context. The innovative nature of this study informs knowledge on several aspects of research into the chronic illness experience, namely, methods of data collection with vulnerable people, practitioner-research, managing multiple pathology, the `expert patient', chronicity, and specialist care outcomes.

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