Patient-perceived usefulness and practical obstacles of patient-held records for cancer patients in Japan: OPTIM study.

BACKGROUND: Although the use of a patient-held record (PHR) for cancer patients has been introduced in many settings, little is known about the role of the PHR in palliative care settings and use in Asian cultures. AIM: This study investigated the patient-perceived usefulness and practical obstacles of using the PHR specifically designed for palliative care patients. DESIGN: This study adopted a qualitative design based on semi-structured interviews and content analysis. SETTING/PARTICIPANTS: Fifty cancer patients were recruited from two regions in Japan. They used the PHR for more than three months, and then were asked to participate in a face-to-face interview. RESULTS: The content analysis revealed the following patient-perceived usefulness of the PHR: (1) increase in patient-staff communication; (2) increase in patient-family communication; (3) increase in patient-patient communication; (4) increase in understanding of medical conditions and treatments; and (5) facilitating end-of-life care discussion. The practical obstacles to using the PHR were also indicated: (1) the lack of adequate instruction about the role of the PHR; (2) undervaluing the role of the PHR and sharing information by medical professionals; (3) patients' unwillingness to participate in decision making; (4) concerns about privacy; (5) burdensome nature of self-reporting; and (6) patients' preference for their own ways of recording. CONCLUSIONS: The PHR can be helpful in facilitating communication, understanding medical conditions and treatments, and facilitating end-of-life care discussion; however, for wide-spread implementation, resolving the obstacles related to both patients and health-care professionals is required.

[Problems and potential solutions of regional palliative care: a trial of the multiregional and multidisciplinary conference in the OPTIM study].

Quality palliative care is required at the community level, and interaction among multidisciplinary practitioners from various regions might be useful for improving community palliative care. The aims of the present study are: 1)to evaluate the participant's-perception of the usefulness of the interactive conference of multidisciplinary multiregional healthcare practitioners, and 2)to clarify the areas needing to be improved in community palliative care, raised in the conference. A total of 336 multidisciplinary practitioners from 4 areas of Japan participated in the conference. Overall, more than 80% of the participants evaluated the conference as very useful or useful; more than half reported that the conference was very useful or useful to obtain a concrete solution for the obstacles and to utilize the lessons though the conference as a means to improve quality of care in their own community. The identified areas needing improvement are: 1)developing an interactive networking among healthcare practitioners and/or organizations in the community; 2)developing a system of high quality, easily-available specialized palliative care service; 3)improving the knowledge and perception of medical professionals concerning palliative care and home care; 4)developing a collaborative care system between hospitals and community healthcare practitioners and/or organizations; 5)developing a collaborative care system among community healthcare practitioners and/or organizations; 6)optimizing existing resources available in the community; 7)improving the perception of patients and the general public about palliative care, home care, and cancer; and 8)to reevaluate the regulations, laws, healthcare system, and financial or human resources at the social level.

The appraisal of positive life changes following cancer diagnosis: an interview study.

OBJECTIVE: This research examines positive life changes that cancer patients may experience following their diagnosis. Although cancer is often believed to have negative impacts on the life of patients, positive impacts have been also discussed empirically. This study focuses on cancer patients' appraisal of positive life changes following their diagnosis and examines how and in which fields they recognize their lives as positively changed based on the study of Petrie et al. (1999). METHODS: A total of eight cancer patients in a cancer support group participated in this research. A group discussion and semistructured interviews were conducted. Content analysis was applied. RESULTS: The content analysis produced insights into the seven types of cancer-related life changes: improved empathy, greater knowledge about health, renewed recognition of life, change in personal life priorities, greater appreciation of health and life, improved close relationships, and healthy lifestyle change. Negative life changes were also reported. SIGNIFICANCE OF THE RESEARCH: This research showed that cancer patients tended to find and appraise their own positive life changes following cancer. The categorization of positive life changes basically supported that of Petrie et al. (1999), but produced an original category: renewed recognition of life. Positive life changes might be seen as a natural process that encourages patients' adjustment to cancer. Understanding positive impacts of cancer could be important in capturing the life-sized features of cancer patients. Future research could expand the view of the impacts of cancer and demonstrate how people recognize them as benefits.