Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers.

PURPOSE: The care of cancer patients involves collaboration among health care professionals, patients, and family caregivers. As health care has evolved, more complex and challenging care is provided in the home, usually with the support of family members or friends. The aim of the study was to examine perceived needs regarding the psychosocial tasks of caregiving as reported by patients and caregivers. We also evaluated the association of demographic and clinical variables with self-reported caregiving needs. METHODS: Convenience samples of 100 cancer patients and 100 family caregivers were recruited in outpatient medical and radiation oncology waiting areas-the patients and caregivers were not matched dyads. Both groups completed a survey about their perceptions of caregiving tasks, including how difficult the tasks were for them to do. Demographic information was also provided by participants. RESULTS: Caregivers reported providing more help in dealing with feelings than patients endorsed needing. Caregivers were also more likely than patients to report the psychosocial aspects of caregiving were more difficult for them. Lastly, caregivers were more likely to report helping with logistical issues in comparison with patients expressing this need. Race, length of time since diagnosis, and age were associated with patients' expressed needs, while only number of hours spent providing care was associated with the caregivers' reporting of care activities. CONCLUSIONS: Our results suggest that patients may underestimate how difficult caregivers perceive the psychosocial aspects of caregiving to be. Also, it seems that caregivers tend to take on the psychosocial aspects of caregiving, although patients do not tend to report this need. Caregiving needs were only minimally associated with demographic variables, as was participation in caregiving tasks.

An analysis of educational and learning needs of cancer patients and unrelated family caregivers.

Family caregiving involves the provision of care by family members and self-care by patients, with the two groups participating together in illness-related care. A convenience sample of 100 patients and 100 unrelated family caregivers were surveyed to examine their perceptions of the caregiving skills they perform, the difficulty they experience in performing certain skills, and their associated learning needs. Descriptive analysis of data revealed differences in the type of activities patients and caregivers perform, the perceived difficulty of caregiving tasks, and their need for assistance. Uncertainty about disease stage poses important implications for educators.

Consent form heterogeneity in cancer trials: the cooperative group and institutional review board gap.

BACKGROUND: Cooperative group (CG) provided consent forms (CGP-CFs) undergo re-review and revision by local institutional review boards (IRB) before institutional approval. We compared the relative readability and length of IRB-approved consent forms (IRB-CFs) used at seven academic institutions with their corresponding CGP-CFs. We also assessed the variability of these metrics across our institutions. METHODS: This study included 197 consent forms (CFs) from 56 CG trials that were open in at least two of the participating institutions. The Flesch Reading Ease Score (FRES), the Flesch-Kincaid Grade Level (FKGL), and document length were collected on all CFs. Unpaired t test was used to compare length and readability of CGP-CF with the IRB-CF. Analysis of variance and Bonferroni-Dunn tests were used to assess interinstitutional variability in readability for all IRB-CFs. All statistical tests were two-sided. RESULTS: IRB-CFs were statistically significantly longer than CGP-CFs (mean number of pages = 17 vs 13; P < .001). Mean FKGLs were higher (10.3 vs 9.4; P < .0001) and the mean FRESs were lower (53.1 vs 57.1; P < .0001) for IRB-CFs compared with CGP-CFs. Readability varied statistically significantly between institutions for all sections of the IRB-CF (P < .0001). Finalized IRB-CFs for identical clinical trials at different institutions demonstrated substantial heterogeneity of readability and length. CONCLUSIONS: As CFs progress from National Cancer Institute (NCI)-sponsored CGs to local IRBs, they seem to become longer and less readable. Interinstitutional heterogeneity in CF readability is substantial and widespread. More consistent adherence to CGP-CFs based on the newly revised NCI CF template with minimal modification by local IRBs should help simplify and standardize CFs used in cancer clinical trials.