Little research has compared the perceptions of health professionals (HPs), patients, and caregivers about the communication of prognostic information. The objectives of this literature review were to determine 1) patient and caregiver perceptions of levels of information received about prognosis and end-of-life (EoL) issues regarding a life-limiting illness; 2) patient perceptions of and factors related to their understanding and awareness of prognosis; 3) HPs' perceptions of patients' wishes about disclosure of prognosis and factors related to their decision whether to disclose; and 4) concordance between HPs and patients/caregivers regarding the information given by HPs about prognostic and EoL issues. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Register of Controlled Trials [Central]) up to November 2004. The reference lists of identified studies were hand searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Fifty-one studies were identified. There was a large discrepancy between patients/caregivers and HPs regarding the amount of information they believed had been given. Patients' understanding and awareness of information received conflicted with the HPs' perceptions of patients' understanding and awareness of the information that had been given. HPs tended to underestimate patients' need for information and overestimate patients' understanding and awareness of their prognosis and EoL issues. HPs need to repeatedly check patients' understanding and preferences for information.

RUNNING TITLE: PROOF OF LOVE Background: Motor neurone disease (MND) remains universally fatal despite the introduction of diseasemodifying therapy in the form of the glutamate inhibitor, riluzole. Caring for people with MND presents enormous challenges, many of which are particular to the disease complex. An understanding of the carer burden is required in order to inform the delivery of palliative care to MND patients and their carers. Aim: To explore the experiences and perceptions of carers and former carers of people with MND with emphasis on the later stages of the disease. Participants and Methods: Focus groups were conducted with two groups of former carers and one group of current carers recruited through the Motor Neurone Disease Association of NSW. Recruitment continued until no new themes emerged. The discussions were taped, transcribed verbatim and content analysed. Results: There was a clear thematic trajectory from diagnosis through to death and bereavement with ramifications evident for the delivery of palliative care. Unmet emotional needs and the unremitting and all-encompassing nature of care were emphasised, as was the importance of love in sustaining the carer. Conclusions: The experience of caring for a person with MND has a lasting psychological impact which may outweigh the physical and financial costs of care. This relatively unexplored area of enquiry lacks adequate models on which to base quantitative investigation. This qualitative study provides a starting point for future research.

No abstract

Women cancer carers have consistently been found to report higher levels of distress than men carers. However, there is little understanding of the mechanisms underlying these gender differences in distress, and a neglect of rewarding aspects of care. We conducted in-depth semistructured interviews with 53 informal cancer carers, 34 women and 19 men, to examine difficult and rewarding aspects of cancer care. Thematic analysis was used to analyze the transcripts. Women were more likely to report negative changes in the relationship with the person with cancer; neglect of self, social isolation, and physical health consequences; anxiety; personal strength and growth; and to position caring as a privilege. Men were more likely to report increased relational closeness with the person with cancer, and the burden of additional responsibilities within the home as a difficult aspect of caring. We interpret these findings in relation to a social constructionist analysis of gender roles.

Objective: To explore treatment decision-making experiences of Australian migrants with cancer from Arabic, Chinese, or Greek backgrounds and their relatives.Methods: 73 patients and 18 caregivers from cancer support groups and oncology clinics participated in either a focus group (n=14) or semi-structured interview (n=21) conducted in the participant's own language. Participant treatment decision-making preferences were discussed as part of patients' overall treatment experience and a thematic analysis conducted.Results: Four main themes emerged from the data:(1) perceived role of the patient in decision-making;(2) access to information and the impact of language; (3)cultural influences (4)family involvement. The majority of participants experienced passive involvement during treatment consultations, but expressed a desire for greater involvement. Language rather than culture was a greater obstacle to active participation. Difficulty communicating effectively in English was the most significant barrier to participation in treatment decisions. To overcome language challenges, participants actively sought information from alternative sources. Conclusion and practice implications:This study provides new insights into the influence of language and culture on the treatment decision-making experiences of migrants with cancer and their families within the Australian cancer care system. To reduce health disparities doctors need to address language difficulties and be aware of cultural differences.