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This paper considers the significant unmet psychosocial needs of the informal carers of cancer patients, drawing on data generated in a 3-year UK study (1997-2000) on the psychosocial needs of cancer patients and their main carers. While the needs of the carers of cancer patients are increasingly being recognised in healthcare policy documents, there is relatively little published literature on these needs. A "significant unmet need" is defined here as a need deemed important by the carer, but which has not been met. A descriptive cross-sectional survey of carers was conducted and the responses of 195 carers relating to 48 psychosocial need items were analysed. A subset of these carers (n = 32) were interviewed. Forty-three per cent of carers had significant unmet needs. They were more likely to be those where the relationship to the patient was not that of a partner or spouse, more likely to have other caring responsibilities, and less likely to have friends or relations to call upon for help. Carers with unmet needs were also more likely to be in poor health themselves or to be caring for a patient who had reached the palliation-only phase in their cancer journey. The majority of carers expressed the importance of needs such as having good relationships with healthcare professionals and receiving honest information, but few expressed dissatisfaction with these aspects of need. Items of significant unmet need clustered around aspects of managing daily life, emotions, and also social identity for a sizeable minority of carers. These are the same areas of significant unmet need that concern patients. However, carers have more of these concerns, reflecting their comparative neglect. The paper also considers how these widespread concerns can be addressed.
This paper considers the significant unmet psychosocial needs of the informal carers of cancer patients, drawing on data generated in a 3-year UK study (1997-2000) on the psychosocial needs of cancer patients and their main carers. While the needs of the carers of cancer patients are increasingly being recognised in healthcare policy documents, there is relatively little published literature on these needs. A "significant unmet need" is defined here as a need deemed important by the carer, but which has not been met. A descriptive cross-sectional survey of carers was conducted and the responses of 195 carers relating to 48 psychosocial need items were analysed. A subset of these carers (n = 32) were interviewed. Forty-three per cent of carers had significant unmet needs. They were more likely to be those where the relationship to the patient was not that of a partner or spouse, more likely to have other caring responsibilities, and less likely to have friends or relations to call upon for help. Carers with unmet needs were also more likely to be in poor health themselves or to be caring for a patient who had reached the palliation-only phase in their cancer journey. The majority of carers expressed the importance of needs such as having good relationships with healthcare professionals and receiving honest information, but few expressed dissatisfaction with these aspects of need. Items of significant unmet need clustered around aspects of managing daily life, emotions, and also social identity for a sizeable minority of carers. These are the same areas of significant unmet need that concern patients. However, carers have more of these concerns, reflecting their comparative neglect. The paper also considers how these widespread concerns can be addressed.
Recent thinking about policy on cancer services in the UK has highlighted the importance of recognising the needs of carers, but is unclear about the ways in which this might be done. Our recent study on the psychosocial needs of cancer patients and their main informal carers was unusual in its combined focus on patients and carers experiencing the 'cancer journey' together. One of our aims was to contribute to an understanding of what it means to be the main carer of someone with cancer. Using the qualitative data from the 79 carers and patients we interviewed, we ask how carers negotiate their place in the cancer situation, and particularly how do carers identify their role in relation to the patient and the medical setting? We posit carers as taking part in a shifting process of 'carerhood' in which competing needs vie for space. Our evidence suggests carers actively negotiate the challenges of their position in dealing with issues of identity, support, and sharing. We suggest that when the carer's involvement in the cancer scenario is recognised and legitimised by others it is easier for them to attend to their own needs alongside those of the patient.
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