Introduction There are around 6.5 million informal carers in the UK, of which approximately 500,000 are caring in the end of life phase (Carers UK, 2015). Despite policies directed at supporting carers (Department of Health, 2010), it is evident that the experience of family carers has not been addressed when caring in end of life care considering that round 90% of those with incurable illness spend the majority of the last year of life at home, often with limited support (Robbins, 1998). Therefore providing support for carers has become a priority (Help the Hospices, 2013), and further research in this area is needed (NCPC, 2012). This study uses a qualitative approach to study the experience of carers.
Aims The purpose of this study is to explore the experience of family carers living with a patient with advanced cancer in order to be able to support them better in the community.
Methods A phenomenological approach was used in order to explore the carers lived experience, through semi-structured interviews. A consecutive sample of carers of patients attending Day Hospice were approached and five caregivers of patients with advanced cancer consented to take part.
Results Three main themes were identified:
The balance of the relationship: stress caused by illness heralded a shift between patient and carer relationship as their social roles changed.
‘How long’: feelings of uncertainty were present daily either in the form of new symptoms, or in the difficulty of planning ahead and the wondering “how long”.
Relentlessness: the 24 h responsibility for caring for a dying relative.
Conclusion This study provides evidence to support the everyday multi-dimensional impact on the carers. More needs to be done to support them.
Implications for practice Outcomes of this study are currently influencing service development and the organisational carers’ strategy.
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