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There is a growing recognition that the carers of cancer patients require information. A key source of this information is the formal health care system that patients, and thus carers, encounter. However, the research literature suggests a lack of clarity on the part of service providers concerning the type, amount, timing and purpose of information for carers. This lack of clarity is reflected in the ways carers have been 'tacked on' to patients and thus are often treated as co-clients. That carers are also an active participants in the illness scenario is not always fully recognized, resulting in failure to provide appropriate information. Carers' interactions with health service providers are complex and context bound, and entail potential tensions of allegiance in the arena of information exchange. This article suggests that the following research and practice is required: a clearer understanding of the informational needs of carers in variable situations, specific ways to address these needs, where carers 'fit in' to the health care system, and how processes of information exchange with carers can be improved.

This paper considers some of the challenges involved in studying informal carers in cancer contexts. It reviews current knowledge by examining, first, the dominant psycho-oncological research tradition that focuses on psychological distress among carers and, second, the more recent sociologically informed body of work examining what carers actually do and the contribution that they make to patient care. The authors suggest that this second sociologically informed approach offers an important counter-weight to the psycho-oncological perspective. The developing research agenda for a sociology of cancer caring is briefly outlined.

The objectives of this study were to identify the prevalence of psychosocial need, and the contributory factors to need, among cancer patients, using a descriptive cross-sectional questionnaire survey of adult cancer patients. The participants were 1,000 patients from four hospitals in the north west of England with the following characteristics: tumour type (breast, colorectal, lymphoma, lung), being 1 month from a 'critical moment' in the cancer journey (i.e. (i) diagnosis, (ii) end of first treatment, (iii) recurrence, (iv) move from active treatment to palliative care), and aged over 18 years. The main outcome measure was a psychosocial needs inventory comprising seven needs categories (48 need items). A sample of 402 was achieved (40% response rate). Psychosocial needs relating to the need categories 'health professionals', 'information' and 'support networks' are commonly expressed and strongly felt by cancer patients. Needs relating to 'identity', 'emotional and spiritual' issues and 'practical' issues are less commonly expressed but are also strongly felt. Particular needs are related to tumour type, illness 'critical moment', age, gender, health status, socioeconomic and other social factors. This information should increase awareness among cancer care professionals about a range of psychosocial needs and may help them target particular patient groups for particular support interventions.

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.

The policy and health service background to this discussion are the radical changes in cancer services currently underway in the wake of the Calman-Hine Report and the wider changes ushered in by the NHS and Community Care Act 1990 (UK). Using the changing face of hospice care as the focus, the authors explore some of the potential issues and dilemmas involved in providing supportive care for cancer patients and their families. Three 'themes', or areas of concern, are highlighted: links between services, changing organizational factors, and increasing 'medical imperialism'. Potential benefits and drawbacks of the changing ethos and organizational structures are discussed. Interview data are used as 'triggers' for the presentation of the authors' own reflections on developments in the hospice and cancer services' arenas. The paper draws on interview data collected in the pilot phase of a 3-year study on the psycho-social needs of cancer patients and their informal carers in north-west England. Twenty-nine interviews were conducted with a range of professionals involved in the provision of cancer services in Lancaster and Kendal. In the spirit of 'gathering thoughts' and facilitating debate, a commentary on developments in the hospice sector is offered rather than any firm conclusion.