Differences in enquiries to CancerBACUP information service by living arrangements.

The study's aim was to ascertain whether living alone is associated with the use of an independent cancer information service. An Enquirer Record Form is completed for every fifth enquirer to the service; two questions asking whether enquirers, patients, relatives/friends were living alone or with others where asked in association with the routine questions. A total of 552 callers were asked in a 5-week period, 77% of all callers in these categories. The main findings were: (1) the proportion of enquirers living alone was similar to the general population; (2) among enquirers, patients were more likely to live alone than relatives/friends; (3) requests differed by whether living alone and by type of enquirer, for example, significantly more people living with others requested emotional support than those living alone, and this contrast was most marked for patients than relatives/friends. This study, notwithstanding its limitations, highlights some of the differences in the use of a service and demonstrates the complexity of information and support seeking.

Do men with prostate or colorectal cancer seek different information and support from women with cancer?

Male cancer patients' use of a national cancer information service, their requests and key predictors of these over the period April 1996 to March 1998 are presented, in comparison with women. The most frequent requests of 411 prostate, 162 male and 217 female colorectal cancer patients were similar: site-specific information, emotional support, publications, specific therapies. Research or clinical trials (P < 0.05), diet and nutrition (P < 0.001) requests differed between men with prostate and colorectal cancers; complementary therapies (P < 0.05), prognosis (P < 0.05) requests differed between male and female colorectal cancer patients. Among prostate cancer patients, employed men aged 60+ were more likely to need emotional support than retired men aged 70 +; men < 59 years old were more likely to request publications, but less likely to enquire about specific therapies than others. Among male colorectal cancer patients, employed men were less likely to request site-specific information, but more likely to need emotional support than retired men; patients from geographical areas other than Thames were more likely to request publications; patients from manual classes were less likely to enquire about specific therapies than those from non-manual classes. The complexity of information and support seeking behaviour is demonstrated; no pattern was found among men or in comparison with women. Further research is needed to enable development of services that are appropriate to individual needs and concerns.

'Dividing the desolation': clients views on the benefits of a cancer counselling service.

This paper describes clients' accounts of the benefits they derived from a short course of cancer counselling provided within a humanist framework. Three hundred and two clients who had attended at least one session of a short course of cancer counselling received an evaluation form, which incorporated both fixed-choice and open-ended questions. One hundred and forty two (47%) clients returned evaluation forms; those who had attended more sessions were significantly more likely to do so. Quantitative data were analysed using SPSS (Statistical Package for the Social Sciences) for Windows and qualitative data using a thematic approach. Almost all clients indicated that they felt they had benefited from counselling. Analysis of the open-ended questions identified nine main benefits of counselling and four key avenues or processes through which clients derived these benefits. Overall, counselling was seen as helping them to work through powerful thoughts and feelings and so to come to terms with cancer and to regain a sense of control in their lives. The benefits of a short course of counselling which clients identified reflect the aims of humanistic counselling which are not well captured by psychiatric assessments or most standard research instruments. In evaluating cancer counselling services, assessments which include these client-defined outcomes may provide a more sensitive way of gauging the value of counselling to a non-clinic population.

Faith, hope, and charity: an in-depth interview study of cancer patients' information needs and information-seeking behavior

OBJECTIVE: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer center. PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months. Main outcome measures Analysis of patients' narratives to identify key themes and categories. RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information : faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

Cancer patients' information needs and information seeking behaviour: in depth interview study.

OBJECTIVES: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer centre. PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months. MAIN OUTCOME MEASURES: Analysis of patients' narratives to identify key themes and categories. RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

An evaluation of a cancer counselling service.

The CancerBACUP London Counselling Service offered short-term face-to-face counselling to self-referred cancer patients and their relatives and friends, provided by experienced supervised counsellors working within a humanistic theoretical framework. This study aimed to identify its clients' characteristics, use of the service, extent of perceived benefits and satisfaction with the service. Sociodemographic data were collected in Data Sheets from all 384 clients who booked an appointment over 18 months; they were predominantly female, < 50 years old and from non-manual social classes. Significantly more people in those classes and in the 30-59 age group attended three or more sessions. Three hundred and nine clients who attended at least once were sent an Evaluation Form; 142 responded. The probability of the Evaluation Forms' return was greater for those who had completed more sessions; the great majority of respondents felt that they had benefited, and were satisfied with the service. This study, notwithstanding its limitations, shows that a short course of counselling may be perceived by clients to be helpful; it also raises other issues of value to those involved in cancer services and/or counselling provision.

An analysis of first-time enquirers to the CancerBACUP information service: variations with cancer site, demographic status and geographical location.

A retrospective comparison of cancer incidence data and, where relevant, population data with 16,955 first-time users (patients, relatives and friends) of a national cancer information service (CancerBACUP) during the period April 1995 to March 1996 is presented. The number of events observed was compared with the number of events expected, were the national rates of cancer incidence and population demographics apply. Standardized incidence ratios (SIRs) (observed - expected ratios) were used to indicate any differences. Statistically significant differences (P < 0.001) in the observed and expected sex, age and primary site distribution of patients enquired about were found. Statistically significant differences (P < 0.001) were also identified for the age, employment status, socioeconomic class and geographical location of first-time enquirers (patients, relatives and friends). Enquiries about brain, testis and breast cancers and non-Hodgkin's lymphoma (NHL) were substantially higher than expected; enquiries about bladder, lung, stomach and colorectal cancers were much lower than expected. As the service is provided via a freephone number, it is available to all, and users might be expected to be randomly distributed across the variables listed. The underlying reasons for the differences identified need to be investigated, and the role of information in the care of cancer patients should be formally evaluated.

Cancer information: a cost-effective intervention.

There is a considerable knowledge base about the information needs of patients with cancer (and their relatives and friends). Those needs will vary according to the disease, the stage of disease, the patient and his or her age, social class and culture. Lack of information may lead to increased anxiety and distress, may impact negatively on the patient's satisfaction and may influence a patient's treatment choices. Other articles in this special edition deal with psychosocial interventions and complementary therapies for cancer patients and explore their efficacy. The reality is that these are unlikely to be made available to all cancer patients for reasons of cost and practicability. Information, however, is a relatively cheap intervention that could--and should--be part of standard care. This article explores some of the research about the provision of information for cancer patients.