Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study.

BACKGROUND: Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. AIM: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. DESIGN: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. SETTING/PARTICIPANTS: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. RESULTS: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. CONCLUSION: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations.

The impact of breast cancer among Canadian women: disability and productivity.

Each year over 20,000 Canadian women are diagnosed with breast cancer. Many breast cancer survivors anticipate a considerable number of years of potential participation in the paid labour market, therefore, the link between breast cancer survivorship and productivity deserves serious consideration. The hypothesis guiding this study is that arm morbidities such as lymphedema, pain, and range of motion limitations are important explanatory variables in survivors' loss of productivity. The study draws from a larger longitudinal research project involving over 600 breast cancer survivors in four geographical locations across Canada. The study's regression results indicate that, after adjusting for fatigue, breast cancer stage, and geographical location, survivors with range of motion limitations and arm pain are more than two and half times as likely to lose some productivity capacity as compared to counterparts with no arm morbidity. The findings make a compelling argument for the necessity of adequate rehabilitation programs delivered at crucial times in breast cancer survivors' recovery. The study's unexpected finding that geographical location is a highly significant predictor of changes in productivity among breast cancer survivors is interpreted as a factor of the regulatory framework governing employment relationships in the four different jurisdictions.

Unraveling women's perceptions of risk for breast cancer.

Inconsistent reports of the prevalence of risk perception accuracy may be related to the use of different classification strategies. The purpose of this study was to compare two approaches for assessing the accuracy of women's breast cancer risk perceptions. A telephone survey was conducted with an age-stratified random sample of British Columbian women 20-79 years of age without a breast cancer diagnosis (n = 761). A comparison of two methods employed to determine perception accuracy revealed substantial differences between the methods with regard to the classification of women as under- and over-estimators. The study highlights the need for researchers to consider the method used to determine the accuracy of risk perceptions and the implications of using different strategies to assess risk perception accuracy when such information is used in research or to guide interventions.

The description and evaluation of a longitudinal pilot study of a smoking relapse/reduction intervention for perinatal women.

BACKGROUND: Up to 70% of women who quit smoking while pregnant will relapse during the first postnatal year. In this study, a community-based, ecological approach guided the development and implementation of a smoking cessation intervention for perinatal women. AIMS: The aims of this pilot project were to: (1) develop and implement a community-based intervention to assist women to stop smoking or prevent smoking relapse during the pre- and postnatal periods, (2) provide feedback on participants' perceptions of the helpfulness of the intervention, (3) compare perceptions of the helpfulness of the intervention between women who received the intervention during the prenatal vs. postnatal periods, and (4) identify additional components of the intervention which need to be included in future research. DESIGN/METHODS: Using a participative process and a detailed review of the literature, researchers, health care professionals and women (pregnant or postnatal) developed a multifaceted intervention. The intervention included four core components, which all women received: home visit by the intervention nurse, follow-up telephone call(s), resource package, and letter of congratulations. Additional optional components included: telephone help line, support groups, referrals and other services. Forty-two women who were pregnant or had recently delivered participated. Descriptive and evaluation data were collected from participants using questionnaires and telephone interviews. The research was approved by the university Research Ethics Board. FINDINGS: Participants found the core components of the intervention to be helpful in their smoking cessation goals, particularly the home visit and resource material. The support groups and smoking help line were not used. There were no differences in how helpful the components of the intervention were perceived to be between women who received it in the prenatal or postnatal periods. CONCLUSIONS: Future research is needed to evaluate the effectiveness of the intervention.

The influence of question wording on assessments of interest in genetic testing for breast cancer risk.

The purpose of this study was to compare the results of different measures of interest in genetic testing for breast cancer risk. A telephone survey of a random sample of women without breast cancer was conducted in British Columbia, Canada. Interest in genetic testing for breast cancer risk was measured in three ways: (1) an unprompted assessment of interest, (2) assessment of interest when prompted with a hypothetical offer of testing, and (3) assessment of interest when provided with supplementary information. Substantial differences in reported levels of interest in genetic testing were observed across the different assessment approaches, with the unprompted assessment of interest resulting in lowest levels of interest. The highest levels of interest were observed when the assessment of interest was prompted with a hypothetical offer of testing. Factors predicting interest in genetic testing varied depending on the assessment measure used. These findings suggest that more attention must be given to measurement issues, including complete reporting of measures used in research, development of standardized approaches to assessing interest in genetic testing, and more rigorous psychometric evaluations of measures of interest in genetic testing.

Women's perceptions of breast cancer risk: are they accurate?

BACKGROUND: The objective was to compare women's personal estimates of their risk with objective breast cancer risk estimates and to describe the risk factors for breast cancer identified by women. METHODS: Telephone survey of a random sample of 761 rural and urban women with no history of breast cancer. Survey instrument included measures of perceptions of lifetime risk for breast cancer for themselves and for the average woman, perceptions of risk factors that influenced their risk and the average woman's risk for breast cancer. Objective estimates of breast cancer risk were calculated using the Gail et al. algorithm. Descriptive statistics and multiple linear regression were used to analyze the data. RESULTS: Women's estimates of their own lifetime risk for breast cancer were significantly higher than their Gail model risk estimates (mean difference = 19%, p < 0.001). The women's personal breast cancer risk estimates were lower than estimates of risk for a hypothetical average woman (mean difference = -8%, p < 0.001). Fifty percent of the sample reported a perceived risk estimate at least 15% above their Gail risk estimate. The risk factors for breast cancer most frequently identified included family history, nutrition/diet, smoking, lifestyle, environment, stress and age. Although the risk factors used to calculate the Gail model risk estimates were reported by some study participants, these women consistently identified only family history as their personal risk factor. CONCLUSION: Women have difficulty accurately estimating their breast cancer risk and identifying known risk factors for breast cancer. Individual risk information may be more useful in enhancing accurate risk perceptions than the "1 in 9" message.

Women's interest in genetic testing for breast cancer risk: the influence of sociodemographics and knowledge.

The objective of this study was to assess women's interest in genetic testing for breast cancer risk. Randomly selected samples of 761 women without breast cancer from the general population of British Columbia, Canada, and 260 women with breast cancer from the provincial cancer registry participated in a telephone survey that assessed interest in genetic testing for breast cancer risk, knowledge of hereditary breast cancer and genetic testing, and sociodemographics. Women with breast cancer did not possess superior knowledge of breast cancer genetics compared with women from the general population. Of the women with breast cancer, 30.8% reported interest in testing or had been tested, compared with 28.5% of women without breast cancer. Controlling for differences in age, education, personal history of breast cancer, and knowledge of genetics, women with at least one relative with breast cancer were 2.3 times more likely to express interest in genetic testing for breast cancer risk than those with no family history. There were significant interactions between breast cancer status and education and between age and knowledge of breast cancer genetics. Women without breast cancer and with a positive family history, who were between 20 and 40 years of age, were most likely to be interested in testing. The women with breast cancer who were interested in testing tended to be approximately 50 years of age, had a positive family history, and had more years of education. Women with a family history of breast cancer, well-educated women with breast cancer, and younger women, particularly those with knowledge of genetic testing, are important target audiences for community-based education on genetic testing for breast cancer risk.