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Issues of power, control and choice in children's hospice respite care services: a qualitative study
Anne Grinyer1, Sheila Payne, Zephyrine Barbarachild
1School of Health and Medicine, Lancaster University, Lancaster, UK. a.grinyer@lancaster.ac.uk
Abstract:
The changes within children's palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children's hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families.
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