A cultural and gender-based approach to understanding patient adjustment to chronic heart failure.

BACKGROUND: Persons identifying as Black, Chinese, or South Asian make up the largest minority groups in Canada. Individuals with chronic heart failure (CHF) from these groups experience a greater rate of re-hospitalization and poorer quality of life. Although experts agree that culture can shape the experience of CHF, little is known about how patients from these minority populations define a good quality of life with CHF and what barriers they experience when carrying out self-care behaviours. The aim of this qualitative study was to examine cultural and gender-based influences on quality of life in patients with CHF. METHODS: Purposive sampling included 30 patients (67% male), 18 to 75 years of age, who self-identified as Black (n = 8), Chinese (n = 9), or South Asian (n = 6). Caucasians (n = 7) were included as a comparison group. Semi-structured interviews (see the online appendix), lasting approximately 60 min, were conducted, which focused on personal understanding of CHF and living with the disease, including impact on lifestyle and quality of life. An inductive qualitative approach with thematic content analysis was used to develop key insights into individual experience of CHF, as well as cultural and gender-based influences on self-care and quality of life. Descriptive statistics were generated from questionnaire responses. RESULTS: Five key themes emerged from the narrative analysis of participant interviews: (i) CHF as an emergent reality, (ii) quality of life and disruption of lifecourse milestones, (iii) the challenge to accept CHF and re-evaluation of quality of life; (iv) impact on social activities essential to quality of life, and (v) life with CHF as a commitment to culturally tailored self-care. Participants described the unique impact of CHF on their quality of life, including life trajectory milestones such as dating, parenting, and retirement planning, as well as the importance of accepting their diagnosis, and the reframing goals for living well with heart failure. Positive and negative impacts on social relationships were noted, including sexual intimacy and interactions with spouses, other family members, and co-workers. CONCLUSIONS: Study findings highlight important lifespan, cultural, and gender considerations that can inform the improvement of patient care and quality of life for patients and their families.

A Moderated e-Forum for Adults With Cardiovascular Disease: Usability Study.

BACKGROUND: Self-care behaviors are commonly prescribed to manage both cardiovascular disease and hypertension to reduce modifiable risk factors and improve quality of life. Nevertheless, long-term adherence to self-care recommendations for cardiac patients has been problematic. In cardiac patients, moderated online forums have been found to be particularly useful in supporting maintenance of heart-healthy diet and fewer hospital visits. As such, we developed the e-Forum, a Web-based moderated forum designed to promote continued user engagement and long-term self-care adherence. OBJECTIVE: The objective of this study was to assess the usability of the user interface for the newly designed e-Forum. In addition to overall user satisfaction, we obtained feedback from our target users on the key features of this newly developed interface. METHODS: An iterative design tested the usability of the e-Forum. On the basis of the user feedback, adjustments were made to the design of our e-Forum, and these changes were then tested in the succeeding group. Participants were recruited from the Heart Function Clinic at the Peter Munk Cardiac Center, University Health Network. After consenting to participate in our study, patients were asked to complete a set of goal-oriented tasks and a feedback interview for the e-Forum. A content analysis of the transcripts from the set of goal-oriented tasks and feedback interviews identified several themes, including general feedback and comments regarding 3 key areas of the e-Forum: layout, navigation, and content. RESULTS: Overall, 13 cardiac patients (aged 32-81 years) participated in 3 rounds of testing. Participants across all 3 rounds were highly satisfied with our e-Forum and indicated that they would find such a forum useful in managing their health. Expressions of overall satisfaction with the e-Forum and positive comments regarding layout increased between the initial and the final round. As improvements were made to the e-Forum based on participant feedback, potential barriers, negative comments related to the content, and the number of navigation errors decreased between rounds 1 and 3. CONCLUSIONS: We found evidence to support the usability of the user interface for our e-Forum. These results indicate that the e-Forum will likely be a successful tool to support an online community of cardiac patients in their efforts to sustain long-term lifestyle behavior change.

A two-dimensional model of disrupted body integrity: initial evaluation in head and neck cancer.

PURPOSE: This cross-sectional study presents an initial psychometric evaluation of a two-dimensional (perceptual and evaluative) conceptualization and measure of disrupted body integrity (DBI)-illness-related disruption of the sense of the body as an integrated, smoothly functioning whole. METHODS: Male and female head and neck cancer (HNC) outpatients (N = 98) completed a questionnaire package prior to outpatient visits. MAIN OUTCOME MEASURES: The Disrupted Body Integrity Scale (DBIS) was developed to measure the perceptual and evaluative facets of DBI. Self-report measures of disfigurement, stigma, depressive symptoms, and negative affect were also completed. RESULTS: Almost all DBIS subscales demonstrated good internal consistency. Results largely supported the DBIS's construct validity. The majority of subscales correlated within the predicted range of r's = .40-.70. Almost all DBIS constructs were positively linked with either depressive symptoms or disfigurement. None correlated with positive affect, and only two subscales, abnormal sensations (perceptual) and physical vulnerability (evaluative), correlated with negative affect. DBIS constructs showed little relation with stigma, once disfigurement effects were controlled for. CONCLUSIONS: Findings offer preliminary evidence for the DBIS and the relevance of DBI in HNC. Further evaluation of DBI in disease adaptation and the DBIS's factor structure is warranted.

Do stigma and its psychosocial impact differ between Asian-born Chinese immigrants and Western-born Caucasians with head and neck cancer?

Stigma appears to influence emotional distress and well-being in cancer survivors, but cross-cultural differences have been ignored. Previous studies suggest that stigma may be especially relevant for survivors of Asian origin. However, their study designs (e.g. focused on female cancers, qualitative designs, and an absence of comparison groups) limit the strength of this conclusion. We hypothesized that (1) Asian-born Chinese immigrants (AI) would report more perceived cancer-related stigma than Western-born Caucasians (WBC); and (2) the impact of stigma on emotional distress and well-being would be greater in AI as compared to WBC. Head and neck cancer survivors (n = 118 AI and n = 404 WBC) completed measures of well-being, emotional distress, and a three-item indicator of stigma in structured interviews. The majority of respondents (59%) reported one or more indicators of stigma. Stigma correlated significantly with emotional distress (r = .13, p = .004) and well-being (r = -.09, p = .032). Contrary to our hypotheses, WBCs and AIs did not differ in reported stigma nor did we detect differences in its psychosocial impact. Stigma exerts a deleterious psychosocial impact on head and neck cancer survivors. It did not differ significantly between AI and WBC survivors.

Distancing, self-esteem, and subjective well-being in head and neck cancer.

BACKGROUND: Distancing (i.e. construing oneself as dissimilar to a negatively-stereotyped group) preserves self-esteem and may benefit other domains of subjective well-being. Head and neck cancer (HNC) is stigmatized because major risk factors include avoidable lifestyle variables (smoking, alcohol consumption, and human papilloma virus). Because the benefits of coping efforts, such as distancing, are most evident when people are under stress, we hypothesize that the psychosocial benefits of distancing will be most pronounced when cancer and its treatment interfere substantially with participation in valued activities and interests (i.e. high illness intrusiveness). OBJECTIVE: To test whether distancing preserves self-esteem and other domains of subjective well-being (SWB) in HNC, especially when illness intrusiveness is high. METHODS: Five hundred and twenty-two HNC outpatients completed a semantic-differential measure of perceived similarity to the 'cancer patient' and measures of illness intrusiveness, self-esteem, depressive symptoms, and psychological well-being in structured interviews. Evaluations of the 'cancer patient' reflected cancer stereotypes. RESULTS: A statistically significant interaction supported the central hypothesis: When people held negative stereotypes, those who construed themselves as similar to the 'cancer patient' reported lower self-esteem than those who construed themselves as dissimilar. Distancing did not benefit other SWB variables. Some results were counter-intuitive: e.g. Emotional distress increased with increasing illness intrusiveness when people did not hold negative cancer stereotypes, but when they held highly negative stereotypes, distress decreased with increasing illness intrusiveness. CONCLUSIONS: Overall, distancing preserved self-esteem in people with HNC and was associated with benefits in other SWB domains.

Usability Testing of an Internet-Based e-Counseling Platform for Adults With Chronic Heart Failure.

BACKGROUND: Chronic heart failure (CHF) is a major cause of hospitalization and mortality. In order to maintain heart function and quality of life, patients with CHF need to follow recommended self-care guidelines (ie, eating a heart healthy diet, exercising regularly, taking medications as prescribed, monitoring their symptoms, and living a smoke-free life). Yet, adherence to self-care is poor. We have developed an Internet-based e-Counseling platform, Canadian e-Platform to Promote Behavioral Self-Management in Chronic Heart Failure (CHF-CePPORT), that aims to improve self-care adherence and quality of life in people with CHF. Before assessing the efficacy of this e-platform in a multisite, double-blind, randomized controlled trial, we evaluated the usability of the prototype website. OBJECTIVE: The objective of the study was to assess the usability of the CHF-CePPORT e-Counseling platform in terms of navigation, content, and layout. METHODS: CHF patients were purposively sampled from the Heart Function Clinic at the Peter Munk Cardiac Center, University Health Network, to participate in this study. We asked the consented participants to perform specific tasks on the website. These tasks included watching self-help videos and reviewing content as directed. Their interactions with the website were captured using the "think aloud" protocol. After completing the tasks, research personnel conducted a semi-structured interview with each participant to assess their experience with the website. Content analysis of the transcripts from the "think aloud" sessions and the interviews was conducted to identify themes related to navigation, content, and layout of the website. Descriptive statistics were used to summarize the satisfaction data. RESULTS: A total of 7 men and women (ages 39-77) participated in 2 iterative rounds of testing. Overall, all participants were very satisfied with the content and layout of the website. They reported that the content was helpful to their management of CHF and that it reflected their experiences in coping with CHF. The layout was professional and friendly. The use of videos made the learning process entertaining. However, they experienced many navigation errors in the first round of testing. For example, some participants were not sure how to navigate across a series of Web pages. Based on the experiences that were reported in the first round, we made several changes to the navigation structure. This included using large navigation buttons to direct users to each section and providing tutorial videos to familiarize users with our website. We assessed whether these changes improved user navigation in the second round of testing. The major finding is that participants made fewer navigation errors and they did not identify any new problems. CONCLUSIONS: We found evidence to support the usability of our CHF-CePPORT e-Counseling platform. Our findings highlight the importance of a clear and easy-to-follow navigation structure on user experience.

The effectiveness of loyalty rewards to promote the use of an Internet-based heart health program.

BACKGROUND: Internet-based health programs have been shown to be effective in reducing risk for cardiovascular disease. However, their rates of enrollment and engagement remain low. It is currently unclear whether rewards from established loyalty programs can serve as a conditioned stimulus to improve the use of a freely available Internet-based program. OBJECTIVE: The objectives of the study were to (1) examine enrollment rates and levels of engagement with the My Health eSupport program between a Conditioned Reward group and a Control group, and (2) investigate the influence of loyalty rewards and participant characteristics on levels of enrollment and program engagement. METHODS: The study sample (n=142,726) consisted of individuals who were offered enrollment in an Internet-based health intervention (My Health eSupport) after completing the Heart&Stroke Risk Assessment on the Heart and Stroke Foundation website. My Health eSupport programs provided encouragement and tips for lifestyle change. This is a free, self-guided, fully automated program that proactively delivers tailored email messages at 2-week intervals based on the participant's stage of motivational "readiness" and priority for lifestyle change. Participants in the Conditioned Reward group were offered a single exposure of 20 loyalty reward points from the Air Miles loyalty program for completing the Heart&Stroke Risk Assessment (10 reward points) and enrolling in the Internet-based program (10 reward points). Meanwhile, no rewards were given to the Control group participants. All data were collected between February 1, 2011 and February 10, 2012. RESULTS: In total, 51.38% (73,327/142,726) of individuals in the Conditioned Reward group and 48.62% (69,399/142,726) of individuals in the Control group completed the Heart&Stroke Risk Assessment. Subsequently, significantly more individuals from the Conditioned Reward group (52.96%, 38,835/73,327) enrolled in the My Health eSupport program than Controls (4.07%, 2826/69,399). Regression analyses indicated that individuals were 27.9 times (95% CI 26.4-29.4; P<.001) more likely to join the My Health eSupport program when presented with loyalty rewards controlling for gender, age, education, ethnicity, employment, and number of modifiable risk factors. However, ongoing engagement level was low in both groups and it was not influenced by loyalty rewards. Instead, individuals were more likely to engage with the My Health eSupport program if they were greater than 60 years of age (OR 12.56, 95% CI 5.66-27.8; P<.001), were female (OR 1.27, 95% CI 1.09-1.46; P=.002), or had one or more modifiable risk factors (OR 1.38, 95% CI 1.31-1.45; P<.001). CONCLUSIONS: Our findings suggest that a single exposure of loyalty rewards may be used to encourage individuals to enroll in an Internet-based preventative health program, but additional strategies are required to maintain engagement level. Future studies need to examine the schedules of loyalty reward reinforcement on the long-term engagement level of Internet-based health programs.

E-counseling as an emerging preventive strategy for hypertension.

PURPOSE OF REVIEW: Lifestyle counseling that includes exercise training, diet modification, and medication adherence is critical to hypertension management. This article summarizes the efficacy of lifestyle counseling interventions in face-to-face, telehealth, and e-counseling settings. It also discusses the therapeutic potential of e-counseling as a preventive strategy for hypertension. RECENT FINDINGS: The recent proliferation of telehealth and e-counseling programs increases the reach of preventive counseling for patients with cardiovascular disorders. Blood pressure reduction following these interventions is comparable to face-to-face interventions. However, the effectiveness of e-counseling varies depending on the design features of the core protocol. An evidence-based guideline needs to be established that identifies e-counseling components which are independently associated with blood pressure reduction. As the Internet becomes more sophisticated, e-counseling is demonstrating a therapeutic advantage in comparison with other telehealth interventions. SUMMARY: Current evidence supports further development of preventive e-counseling programs for hypertension. A pressing challenge for investigators is to specify key evidence-based components of e-counseling that are essential to the core protocol. In order to achieve this goal, it will be necessary to ensure that e-counseling programs are also clinically organized, in order to guide patients through the process of initiating and sustaining therapeutic behavior change.

An Internet-Based Counseling Intervention With Email Reminders that Promotes Self-Care in Adults With Chronic Heart Failure: Randomized Controlled Trial Protocol.

BACKGROUND: Chronic heart failure (CHF) is a public health priority. Its age-standardized prevalence has increased over the past decade. A major challenge for the management of CHF is to promote long-term adherence to self-care behaviors without overtaxing available health care resources. Counseling by multidisciplinary health care teams helps to improve adherence to self-care behaviors and to reduce the rate of death and hospitalization. In the absence of intervention, adherence to self-care is below recommended standards. OBJECTIVE: This trial aims to establish and evaluate a Canadian e-platform that will provide a core, standardized protocol of behavioral counseling and education to facilitate long-term adherence to self-care among patients with CHF. METHODS: Canadian e-Platform to Promote Behavioral Self-Management in Chronic Heart Failure (CHF-CePPORT) is a multi-site, double blind, randomized controlled trial with a 2 parallel-group (e-Counseling + Usual Care vs e-Info Control + Usual Care) by 3 assessments (baseline, 4-, and 12-month) design. We will identify subjects with New York Heart Association Class II or III systolic heart failure from collaborating CHF clinics and then recruit them (n=278) by phone. Subjects will be randomized in blocks within each site (Toronto, Montreal, and Vancouver). The primary outcome will be improved quality of life, defined as an increased number of subjects with an improvement of ≥5 points on the summary score of the Kansas City Cardiomyopathy Questionnaire. We will also assess the following secondary outcomes: (1) diet habits, depression, anxiety, smoking history, stress level, and readiness for change using self-report questionnaires, (2) physical activity level, current smoking status, and vagal-heart rate modulation by physiological tests, and (3) exercise capacity, prognostic indicators of cardiovascular functioning, and medication adherence through medical chart review. The primary outcome will be analyzed using generalized estimation equations with repeated measures on an intention-to-treat basis. Secondary outcomes will be analyzed using repeated-measures linear mixed models with a random effects intercept. All significant main effects or interactions in the statistical models will be followed up with post hoc contrasts using a Bonferroni correction with a 2-sided statistical significance criterion of P<.05. RESULTS: This 3.5-year, proof-of-principle trial will establish the e-infrastructure for a pan-Canadian e-platform for CHF that is comprised of a standardized, evidence-based protocol of e-Counseling. CONCLUSIONS: CHF-CePPORT is designed to improve long-term adherence to self-care behaviors and quality of life among patients with CHF. It will demonstrate a distinct Canadian initiative to build capacity for preventive eHealth services for patients with CHF. TRIAL REGISTRATION: ClinicalTrials.gov NCT01864369; http://clinicaltrials.gov/ct2/show/NCT01864369 (Archived by WebCite at http://www.webcitation.org/6Iiv6so7E).

Negative cancer stereotypes and disease-specific self-concept in head and neck cancer.

BACKGROUND: Life-threatening diseases, such as head and neck cancer (HNCa), can stimulate the emergence of a new disease-specific self-concept. We hypothesized that (i) negative cancer-stereotypes invoke distancing, which inhibits the adoption of a disease-specific self-concept and (ii) patient characteristics, disease and treatment factors, and cancer-related stressors moderate the phenomenon. METHODS: Head and neck cancer outpatients (N = 522) completed a semantic-differential measure of disease-specific self-concept (perceived similarity to the 'cancer patient') and other self-report measures in structured interviews. Negative cancer-stereotypes were represented by the number of semantic-differential dimensions (0-3) along which respondents evaluated the stereotypic 'cancer patient' negatively (i.e., negative valence). We tested the two-way interactions between negative valence and hypothesized moderator variables. RESULTS: We observed significant negative valence × moderator interactions for the following: (i) patient characteristics (education, employment, social networks); (ii) disease and treatment factors (cancer-symptom burden); and (iii) cancer-related stressors (uncertainty, lack of information, and existential threats). Negative cancer stereotypes were consistently associated with distancing of self from the stereotypic 'cancer patient,' but the effect varied across moderator variables. All significant moderators (except employment and social networks) were associated with increasing perceived similarity to the 'cancer patient' when respondents maintained negative stereotypes; perceived similarity decreased when people were employed or had extensive social networks. Moderator effects were less pronounced when respondents did not endorse negative cancer stereotypes. DISCUSSION: When they hold negative stereotypes, people with HNCa distance themselves from a 'cancer patient' identity to preserve self-esteem or social status, but exposure to cancer-related stressors and adaptive demands may attenuate these effects.

The burden of stress in head and neck cancer.

BACKGROUND: Head and neck cancer (HNCa) introduces numerous stressors. We developed the Cancer-Related Stressors Checklist (CRSC), which documents exposure to seven categories of common stressors and emotional distress. We surveyed HNCa survivors and examined associations among exposure to cancer-related stressors, illness intrusiveness (i.e., cancer-induced interference with lifestyles, activities, and interests), and distress. We also investigated whether reported exposure rates differ between self-administered and interviewer-administered measures. METHODS: Respondents included HNCa survivors, stratified by sex, who participated in one of two clinical studies (N1 = 162; N2 = 408) examining the psychosocial impact of illness intrusiveness. All completed the CRSC, the Center for Epidemiologic Studies Depression Scale, and the Illness Intrusiveness Ratings Scale. Study 1 respondents self-administered the instruments; an interviewer administered them in Study 2. We gathered clinical data by self-report and from medical records. RESULTS: High inter-rater reliability corroborated the 8-subscale structure of the CRSC (Krippendorff alpha = .92). Cancer-related stressor exposures differed significantly across categories (interpersonal stressors were most common). Controlling for empirically identified covariates and distress, exposure to each cancer-related stressor correlated significantly and uniquely with illness intrusiveness. All stressor categories correlated significantly with distress, but coefficients were low to moderate, substantiating incremental validity. Respondents reported fewer exposures when materials were self-administered as compared with interviewer-administered, but reported distress levels did not differ by mode of administration. CONCLUSIONS: Cancer-related stressors are common and burdensome in HNCa and, therefore, merit clinical attention. Identifying specific stressors will allow more targeted and effective interventions to alleviate and prevent distress.