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"Cotterell, Phil"
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Critical perspectives on user involvement
This topical reader provides a critical stock take of the state of user involvement and will be an important resource for students studying health and social care and social work researchers and user activists.
Book
Mechanisms can help to use patients' experiences of chronic disease in research and practice: an interpretive synthesis
To identify and examine mechanisms through which patients' experiences of chronic disease can be accessed, understood, and used to improve outcomes, health care costs, and quality of life for individual patients.
Interpretive synthesis of the research literature on chronic disease and associated areas of clinical practice and service development. Searches of electronic databases (MEDLINE, EMBASE, and British Nursing Index), Internet searches, and snowballing techniques identified 66 relevant publications. The analysis focused on identifying mechanisms; their strengths, weaknesses, and impact.
Ten mechanisms were identified, each with differing potential to access and reach patients; involve patients in decisions about what information is important; enable patients to share experiences/expertise and validate their knowledge; allow professionals and patients to deliberate and build understanding; support shared decision-making, continuity/partnership development, and potential to use patients' experiences. The extent to which patients' experiences led to improved outcomes, health care costs, or quality of life related to the aims of individual studies.
Patients can contribute to improving the design and delivery of chronic disease health care and research if appropriate mechanisms are in place. There is a need for future research about optimal configurations of mechanisms and links between mechanisms across health care and research.
Journal Article
Living with life limiting conditions: a participatory study of people's experiences and needs
This thesis is focused upon experiences of living with life limiting conditions. It aimed to gain accounts from people who, potentially, had palliative care needs, to highlight a range of experiences of their lives and conditions and to identify what these service user needs might be. Establishing any contribution of involving service users in the research and any social or environmental factors that may shape or influence experiences of living with a life limiting condition were further aims. To this end it was pertinent to consider if the social model of disability could contribute new perspectives to palliative care research. This qualitative research utilised a participatory approach. Service users were intrinsically involved in the research within the Service User Research Advisory Group (SURAG). My separate study group comprised of twenty-five participants, sixteen women and nine men, aged thirty eight to eighty five years. Fourteen participants had a cancer diagnosis, ten had non-cancer conditions and one participant had both cancer and another non-cancer condition. Ten participants took part in individual face-to-face interviews, twelve in small discussion groups and three were studied purely in a period of participant observation. Thematic analysis was conducted collectively with SURAG members and identified eight different but interconnected themes. Themes of diagnosis, fear, anger/frustration, grief, relationships, services, difference/individuality and independence/dependence were identified. As well as being a distinct theme in its own right, independent/dependenwt as in fact a central and overarching theme with a negotiation between independence and dependence being evident across all themes. The theme of services is presented as a theme in its own right. The participatory approach revealed themes unlikely to have been identified by myself as a sole researcher. It also led to service user outcomes being identified and largely positive appraisals of their involvement in the research.
Dissertation
HOW HOME CARE CAN HELP
\"We're just that old couple...Oh he's bedridden, incontinent', and this is how they talk about you...the management of the care. They come to assess your needs as if you're some sort of dog they're going to put in Battersea Dogs' Home.\"
Magazine Article