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Title: Sanctuary versus business culture: Perspectives of service users and professional staff towards service user involvement at a UK hospice
Authors: Findlay, Helen
Advisors: Nelson-Becker, H
Hakak, Y
Keywords: Palliative and end of life care;Patient and Public Involvement (PPI);Day centres;Organisational change;Managerialism
Issue Date: 2018
Publisher: Brunel University London
Abstract: AIM - To explore the perspectives of service users and professional staff towards service user involvement within the context of a changing cultural environment at a UK hospice. METHOD – Case study and thematic analysis including interviews with 16 staff including the CEO and 6 service users at a UK hospice. FINDINGS – Three overarching themes were identified: involvement and disempowerment in decision-making; belonging and alienation in a period of organisational change; struggle to maintain wellbeing and identity in a changing culture. A key finding is that service users receiving care from the hospice wanted their voices to be heard, valued and respected for their personal care and issues affecting the hospice. Service users did not consider it a burden to be asked for their views. They felt disempowered by a consultation process about organisational changes that appeared not to take their views on board. There is a need to consider whether a reliance on surveys for involving service users is sufficient or can become tokenistic. External social-political-economic pressures plus increasing privatisation of public services could influence the way that hospices operate in future. This could involve moving from a sanctuary to a business culture and potentially towards managerialism by adopting a regulatory rather than rights-based approach with an emphasis on increasing reach, measuring numbers and hitting targets. Service users being viewed as consumers with a focus on reablement/rehabilitation activities and less on psychosocial support could also serve to push hospices to start behaving more like hospitals. CONCLUSION – More qualitative research is needed to ensure the voices of service users living with a life-limiting illness are heard. The contributions they make towards co-production of services and research should also be heard and influence practice and policy. Service users should also be more involved in education and training of staff.
Description: This thesis was submitted for the award of Doctor of Philosophy and was awarded by Brunel University London
Appears in Collections:Social Work
Dept of Health Sciences Theses

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