The study examined how nurses, student nurses, and nurse's aides judge patients' level of pain from five indicators: facial grimacing, maintenance of abnormal body position, restriction of movement, complaints about pain, and signs of possible depression. In Toulouse, France, 214 participants were presented with 48 vignettes describing an elderly patient suffering from osteoarthritis who showed various levels of these signs. The three most important factors in judging pain were the difficulty in making social contact with the patient, the patient's avoidance of changing position, and her avoidance of movements. The nurses put more emphasis on the difficulty in making social contact than did the student nurses and nurse's aides. In all groups, each sign of pain contributed independently and additively to the level of pain that the patient was thought to be experiencing.
The objective of this study was to map people's positions regarding the breaking of bad news to patients. One hundred forty adults who had in the past received bad medical news or whose elderly relatives had in the past received bad news, 25 nurses, and 28 nurse's aides indicated the acceptability of physicians' conduct in 72 vignettes of giving bad news to elderly patients. Vignettes were all combinations of five factors: (a) the severity of the disease (severe but not lethal, extremely severe and possibly lethal, or incurable), (b) the patient's wishes (insists on knowing the full truth vs. does not insist), (c) the level of social support during hospitalization, (d) the patient's psychological robustness, and (e) the physician's decision about communicating bad news (tell the patient that the illness is not severe and minimize the severity of the illness when talking to the patient's relatives, tell the full truth to her relatives, or tell the full truth to both the elderly patient and her relatives). Four qualitatively different positions were found. Twenty-eight percent of participants preferred the full truth to be told; 36% preferred the truth to be told but understood that the physician would inform the family first; 13% did not think that telling the full truth is best for patients; and 23% understood that the full truth would be told in some cases and not in others, depending on the physician's perception of the situation. The present mapping could be used to detect the position held by each patient and act accordingly. This would be made easier if breaking bad news was conceived as a communication process involving a range of health care professionals, rather than as a single occurrence in time.
The analysis of the results will combine the viewpoints of the different disciplines. It will allow us to better understand the logic at work, to characterise the populations at risk of refusal, and perhaps to remove some of the barriers to participation in prevention programs. The identification of such barriers will provide feedback in terms of the conception and management of prevention measures.
Background
Preventive interventions for dementia are urgently needed and must be tested in randomised controlled trials (RCTs). Selection (volunteer) bias may limit efficacy, particularly in trials testing multidomain interventions and may also be indicative of disparities in intervention uptake in real-world settings. We identified factors associated with participation and adherence in a 3-year RCT of multidomain lifestyle intervention and/or omega-3 supplementation for prevention of cognitive decline and explored reasons for (non-) participation.
Methods
Ancillary study during recruitment and follow-up of the 3-year Multidomain Alzheimer Preventive Trial (MAPT) conducted in in 13 memory centres in France and Monaco, involving 1630 community-dwelling dementia-free individuals aged ≥ 70 who were pre-screened for MAPT (1270 participated in MAPT; 360 declined to participate).
Results
Response rates were 76% amongst MAPT participants and 53% amongst non-participants. Older individuals (odds ratio 0.94 [95% confidence interval 0.91–0.98] and those with higher anxiety (0.61 [0.47–0.79]) were less likely to participate in the trial. Those with higher income (4.42 [2.12–9.19]) and family history (1.60 [1.10–2.32]) or greater fear (1.73 [1.30–2.29]) of dementia were more likely to participate, as were those recruited via an intermediary (e.g. pension funds, local Alzheimer’s associations, University of the 3rd Age, sports clubs) (2.15 [1.45–3.20]). MAPT participants living in larger towns (0.71 [0.55–0.92]) and with higher depressive symptoms (0.94 [0.90–0.99]) were less likely to adhere to the interventions. Greater perceived social support (1.21 [1.03–1.43]) and cognitive function (1.37 [1.13–1.67]) predicted better adherence. Descriptively, the most frequent reasons for accepting and refusing to participate were, respectively, altruism and logistical constraints, but underlying motivations mainly related to (lack of) perceived benefits.
Conclusions
Disparities in uptake of health interventions persist in older age. Those most at risk of dementia may not participate in or adhere to preventive interventions. Barriers to implementing lifestyle changes for dementia prevention include lack of knowledge about potential benefits, lack of support networks, and (perceived) financial costs.
Trial registration
NCT00672685 (ClinicalTrials.gov)
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