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1.
J Palliat Med ; 19(6): 626-31, 2016 06.
Article in English | MEDLINE | ID: mdl-27115314

ABSTRACT

BACKGROUND: Physicians worry that disclosure of prognostic information can be distressing and deprive families of hope. Retrospective studies have shown that prognostic disclosure does not abrogate hope, but prospective data are lacking. OBJECTIVE: The study objective was to prospectively evaluate responses to prognosis communication among parents of children with advanced cancer. DESIGN: For this qualitative study we audiotaped conversations between clinicians and parents of children with newly relapsed or refractory cancer, and then interviewed parents about experiences with prognosis communication. Parents were asked to reflect on physician statements about prognosis. SETTING/SUBJECTS: Subjects were 32 pairs of parents and clinicians of children with relapsed or refractory cancer treated at Dana-Farber/Boston Children's Center for Cancer and Blood Disorders, Boston, Massachusetts. RESULTS: Prognosis was discussed in 28/32 conversations (88%). Although most parents (N = 22, 69%) found prognostic information upsetting, most also valued honest communication about prognosis (N = 22, 69%.) Parents noted that frank disclosure fostered hope by relieving uncertainty and allowing them to make the best possible decisions for their children. Excessive optimism or a lack of information, in contrast, was sometimes experienced as a threat to hope and the parent-clinician relationship. A minority of parents were upset by clinician communication about prognosis (N = 4, 12%), but most did not consider the clinician responsible for their distress. Rather, parents attributed distress to the difficult situation. CONCLUSIONS: Many parents consider prognosis communication to be both difficult and necessary. While upsetting, prognostic information engenders hope by helping parents feel prepared to do their best for their children in the difficult days to come.


Subject(s)
Neoplasms , Child , Communication , Humans , Massachusetts , Parents , Prognosis , Prospective Studies , Retrospective Studies
2.
Pediatrics ; 135(5): 868-74, 2015 May.
Article in English | MEDLINE | ID: mdl-25847801

ABSTRACT

BACKGROUND: Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death. METHODS: We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child. RESULTS: Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence. CONCLUSIONS: Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family.


Subject(s)
Attitude to Health , Hope , Neoplasms , Parents/psychology , Adolescent , Child , Child, Preschool , Female , Humans , Interviews as Topic , Male
3.
Exp Aging Res ; 39(1): 80-108, 2013.
Article in English | MEDLINE | ID: mdl-23316738

ABSTRACT

UNLABELLED: BACKGROUND/STUDY CONTEXT: Although the Clock Drawing Test (CDT) is a popular tool used to assess cognitive function, limited normative data on CDT performance exist. The objective of the current study was to provide normative data on an expanded version of previous CDT scoring protocols from a large community-based sample of middle to older adults (aged 43 to 91) from the Framingham Heart Study. METHODS: The CDT was administered to 1476 Framingham Heart Study Offspring Cohort participants using a scoring protocol that assigned error scores to drawn features. Total error scores were computed, as well as for subscales pertaining to outline, numeral placement, time-setting, center, and "other." RESULTS: Higher levels of education were significantly associated with fewer errors for time-setting (Command: p < .001; Copy: p = .003), numerals (Command: p < .001), and "other" (Command: p < .001) subscales. Older age was significantly associated with more errors for time-setting (Command: p < .001; Copy: p = .003), numerals (Command: p < .001), and "other" (Command: p < .001) subscales. Significant differences were also found between education groups on the Command condition for all but the oldest age group (75+). CONCLUSION: Results provide normative data on CDT performance within a community-based cohort. Errors appear to be more prevalent in older compared with younger individuals, and may be less prevalent in individuals who completed at least some college compared with those who did not. Future studies are needed to determine whether this expanded scoring system allows detection of preclinical symptoms of future risk for dementia.


Subject(s)
Aging/psychology , Cognition , Neuropsychological Tests , Adult , Aged , Aged, 80 and over , Cohort Studies , Educational Status , Female , Humans , Male , Middle Aged
4.
Am J Public Health ; 99 Suppl 3: S644-8, 2009 Nov.
Article in English | MEDLINE | ID: mdl-19890170

ABSTRACT

OBJECTIVES: We investigated the frequency with which alcohol advertisements appeared on Massachusetts Bay Transportation Authority (MBTA) transit lines in Boston, MA, and we calculated adult and youths' exposure to the ads. METHODS: We measured the nature and extent of alcohol advertisements on 4 Boston transit lines on 2 separate weekdays 1 month apart in June and July of 2008. We calculated weekday ad exposure for all passengers (all ages) and for Boston Public School student passengers (aged 11-18 years). RESULTS: Alcohol ads were viewed an estimated 1,212,960 times across all Boston-area transit passengers during an average weekday, reaching the equivalent of 42.7% of that population. Alcohol ads were viewed an estimated 18,269 times by Boston Public School student transit passengers during an average weekday, reaching the equivalent of 54.1% of that population. CONCLUSIONS: Advertisers reached the equivalent of half of all Boston Public School transit passengers aged 11 to 18 years and the equivalent of nearly half of all transit passengers in the Boston area with an alcohol advertisement each day. Because of the high exposure of underage youths to alcohol advertisements, we recommend that the MBTA prohibit alcohol advertising on the Boston transit system.


Subject(s)
Advertising , Alcoholic Beverages , Awareness , Transportation , Adolescent , Alcoholic Beverages/classification , Boston , Child , Humans , Surveys and Questionnaires
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