Oncology expressive arts: providing a window to reflect on a stressful experience.

PURPOSE: Evaluate changes in mood, perceived need for help, and task enjoyment after participation in a one-time Oncology on Canvas expressive arts workshop intervention. METHODS: Mixed methods design. Sample: military-veteran oncology survivors and their adult `ohana (family members, caregivers, friends, healthcare providers, volunteers). Measurement tools: Emotion Thermometers, Multiple Affect Adjective Checklist-Revised, Task Enjoyment Question, semi-structured interviews, and self-reflective narratives. Colaizzi's Phenomenological Method was used to conduct a thematic analysis. FINDINGS: Significant improvements in mood, increased task enjoyment, and decreased perceived need for help, with continued effects for up to 30-60 days post-intervention. CONCLUSIONS: A one-time expressive arts workshop intervention can provide a window for oncology survivors and their adult `ohana to reflect on a stressful experience. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Psychosocial healthcare providers (APRNs, nurse educators, LCSWs, psychologists) who are not professional art therapists can effectively implement expressive arts workshops as a cost-effective intervention for oncology survivors and their `ohana.

Internet-based interventions for cancer-related distress: exploring the experiences of those whose needs are not met.

OBJECTIVE: Low levels of engagement in Internet-based interventions are common. Understanding users' experiences with these interventions is a key to improving efficacy. Although qualitative methods are well-suited for this purpose, few qualitative studies have been conducted in this area. In the present study, we assessed experiences with an Internet-based intervention among cancer survivors who made minimal use of the intervention. METHODS: Semi-structured interviews were conducted with 25 cancer survivors who were minimally engaged (i.e., spent around 1 h total on website) with the online intervention, health-space.net. The intervention was a 12-week, facilitated support group with social and informational components. Interviews were analyzed using an interpretive descriptive design. RESULTS: Three broad categories, consisting of 18 specific themes, were identified from the interviews, which included connecting with similar others, individual expectations, and problems with the site (Κ = 0.88). The 'similar others' category reflected the significance of interacting with relatable survivors (i.e., same cancer type), the 'individual expectations' category reflected the significance of participants' expectations about using online interventions (i.e., personally relevant information), and the 'problems with the site' category reflected the significance of study procedures (i.e., website structure). CONCLUSIONS: The data indicate that minimally engaged participants have high variability regarding their needs and preferences for Internet-based interventions. Using qualitative methodologies to identify and incorporate these needs into the next generation of interventions has the potential to increase engagement and outcomes. The current study provides a foundation for future research to characterize survivors' needs and offer suggestions for better meeting these needs.

How language affects peer responsiveness in an online cancer support group: implications for treatment design and facilitation.

OBJECTIVE: Little is known about how positive group interactions develop in online support groups. Previous research suggests that message content, self-disclosure, and emotional expression may be central to this process. The purpose of this study was to identify linguistic and qualitative characteristics of participants' messages that predict how other participants respond in an asynchronous discussion board for cancer-related distress. METHODS: 525 discussion board messages posted by 116 participants in the health-space.net trial were collected. Linguistic Inquiry and Word Count (2001) was used to identify linguistic markers of emotional expression and pronoun use. Message topics were identified using qualitative analysis. Logistic regression and chi-square analyses were used to evaluate whether linguistic characteristics and message topics predicted receiving a response from other survivors in the online group. RESULTS: Messages were more likely to receive a reply if they had higher word count, OR=1.30, p=0.001, or fewer second-person pronouns, OR=0.923, p=0.040. Messages with high levels of positive emotion were less likely to receive a reply, OR=0.94, p=0.03. Common message topics related to self-disclosure (51%), the support group (38.5%), medical experiences (30.9%), and experiences with the website (30.1%). Several message topics were associated with greater likelihood of a reply: self-disclosure (p<0.001), medical experiences (p=0.01), relationship issues (p=0.05), and introductory posts (p<0.01). CONCLUSIONS: Informing participants how to introduce themselves to the group (i.e., detailed and self-focused messages discussing personal issues such as the effects of illness on life and relationships) could promote cohesion and enhance overall engagement with Internet-based support groups or interventions.

Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples.

Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set of self-report questionnaires, and both samples were compared to a population-based sample of cancer survivors (n = 5,150). The Internet sample was younger, better educated, more likely to be female, had longer time since diagnosis, and had more advanced stage of disease (p's < .001), and the registry-sample was over-represented by men and those with prostate or other cancer types (p's < .001). The Internet sample also exhibited lower quality of life and social support and greater mood disturbance (p's < .001). Understanding how convenience and systematic samples differ has important implications for external validity and potential for dissemination of Internet-based interventions.

Recruiting Cancer Survivors to a Mobile Mindfulness Intervention in the United States: Exploring Online and Face-to-Face Recruitment Strategies.

Cancer survivorship research faces several recruitment challenges, such as accrual of a representative sample, as well as participant retention. Our study explores patterns in recruited demographics, patient-reported outcomes (PROs), and retention rates for a randomized controlled trial (RCT) utilizing a mobile mindfulness intervention for the well-being of cancer survivors. In total, 123 participants were recruited using traditional and online strategies. Using the chi-square test of independence, recruitment type was compared with demographic and clinical variables, PROs, and retention at Time 2 and Time 3. Online recruitment resulted in almost double the yield compared to traditional recruitment. Online-recruited participants were more often younger, from the continental U.S., Caucasian, diagnosed and treated less recently, at a later stage of diagnosis, diagnosed with blood cancer, without high blood pressure, and with less reported pain. The recruitment method was not significantly associated with retention. Online recruitment may capture a larger, broader survivor sample, but, similar to traditional recruitment, may also lead to selection biases depending on where efforts are focused. Future research should assess the reasons underlying the higher yield and retention rates of online recruitment and should evaluate how to apply a mix of traditional and online recruitment strategies to efficiently accrue samples that are representative of the survivor population.

Understanding Attitudes and Roles of Oncology Advanced Practitioners in the Setting of Cancer Clinical Trials: A Pilot Study.

PURPOSE: Oncology advanced practitioners (APs), including nurse practitioners, physician assistants, clinical nurse specialists, and pharmacists, are skilled health-care providers who contribute significantly to quality cancer care. However, little is known about how APs function within the clinical trials arena. With low rates of clinical trial enrollment among the adult oncology patient population, APs could play an important role in improving clinical trial enrollment. METHODS: A descriptive cross-sectional study was conducted based on a 57-item survey of oncology APs' attitudes, beliefs, and roles in relation to cancer clinical trials. RESULTS: To assess validity and internal consistency of the survey, a pilot data collection was completed on 14 respondents from Hawaii. The survey's internal consistency across the subscales was moderate to very high, with Cronbach's alpha ranging between 0.55 and 0.86. The majority of oncology APs were interested in being more involved in the clinical trials process, and many are registered as investigators through the National Cancer Institute (NCI). However, few respondents reported being involved in recruitment, consenting, protocol development, or being actively involved with a research base. CONCLUSIONS: This survey was found to be a valid tool to measure APs' attitudes and roles in regards to clinical trials. This survey is just the beginning of data collection in regards to clinical trials among this group of health-care professionals. RECOMMENDATIONS: To gain further insight into oncology APs and their roles in clinical trials, it is recommended that this survey be implemented on a national level as a first step in moving this issue forward.

Identification of Emotional Expression With Cancer Survivors: Validation of Linguistic Inquiry and Word Count.

BACKGROUND: Given the high volume of text-based communication such as email, Facebook, Twitter, and additional web-based and mobile apps, there are unique opportunities to use text to better understand underlying psychological constructs such as emotion. Emotion recognition in text is critical to commercial enterprises (eg, understanding the valence of customer reviews) and to current and emerging clinical applications (eg, as markers of clinical progress and risk of suicide), and the Linguistic Inquiry and Word Count (LIWC) is a commonly used program. OBJECTIVE: Given the wide use of this program, the purpose of this study is to update previous validation results with two newer versions of LIWC. METHODS: Tests of proportions were conducted using the total number of emotion words identified by human coders for each emotional category as the reference group. In addition to tests of proportions, we calculated F scores to evaluate the accuracy of LIWC 2001, LIWC 2007, and LIWC 2015. RESULTS: Results indicate that LIWC 2001, LIWC 2007, and LIWC 2015 each demonstrate good sensitivity for identifying emotional expression, whereas LIWC 2007 and LIWC 2015 were significantly more sensitive than LIWC 2001 for identifying emotional expression and positive emotion; however, more recent versions of LIWC were also significantly more likely to overidentify emotional content than LIWC 2001. LIWC 2001 demonstrated significantly better precision (F score) for identifying overall emotion, negative emotion, and anxiety compared with LIWC 2007 and LIWC 2015. CONCLUSIONS: Taken together, these results suggest that LIWC 2001 most accurately reflects the emotional identification of human coders.

Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors.

OBJECTIVES: The primary aim of the study was to identify specific strengths and challenges of facilitating online cancer support groups relative to face-to-face groups through the use of deductive qualitative analysis. A secondary aim was to quantitatively validate the identified strengths and challenges. METHODS: To better understand how facilitators' roles in online support groups (OSGs) might differ from face-to-face (F2F) support groups, we compared the professional experiences of facilitators from both F2F and OSGs at The Wellness Community. Transcripts from online supervision sessions among OSG facilitators were analyzed using deductive qualitative analysis. A pool of items was developed to measure the primary themes derived from the qualitative analysis and administered to a sample of both F2F and online cancer support group facilitators. RESULTS: Strengths and weaknesses of online support group leaders could be captured in three categories: group processes, structural elements, and facilitator roles. Positive perceptions of group processes, structural elements, and facilitator roles were significantly higher among F2F facilitators than OSG facilitators. CONCLUSION: OSG facilitators described their online groups as helpful to participants and identified some aspects of online groups that promoted more active processing of cancer experiences among group participants. Additionally, they reported that learning how to facilitate an online group strengthened their skills in facilitating face-to-face groups. However, OSGs do appear to present significant challenges to facilitation. These challenges are discussed with particular attention given to ways in which online facilitators have developed "work-arounds" for addressing shortcomings of the internet as a medium for delivering psychosocial services.

Evaluating the validity of computerized content analysis programs for identification of emotional expression in cancer narratives.

Psychological interventions provide linguistic data that are particularly useful for testing mechanisms of action and improving intervention methodologies. For this study, emotional expression in an Internet-based intervention for women with breast cancer (n = 63) was analyzed via rater coding and 2 computerized coding methods (Linguistic Inquiry and Word Count [LIWC] and Psychiatric Content Analysis and Diagnosis [PCAD]). Although the computerized coding methods captured most of the emotion identified by raters (LIWC sensitivity = .88; PCAD sensitivity = .83), both over-identified emotional expression (LIWC positive predictive value = .31; PCAD positive predictive value = .19). Correlational analyses suggested better convergent and discriminant validity for LIWC. The results highlight previously unrecognized deficiencies in commonly used computerized content-analysis programs and suggest potential modifications to both programs that could improve overall accuracy of automated identification of emotional expression. Although the authors recognize these limitations, they conclude that LIWC is superior to PCAD for rapid identification of emotional expression in text. (PsycINFO Database Record (c) 2009 APA, all rights reserved).

Perceived Impact of Participation in a One-Time Expressive Arts Workshop.

INTRODUCTION: This 2015 study examined the use of art to express the experience of the cancer journey of military cancer patients/cancer survivors, family and friends, caregivers, volunteers, and staff members through a one-time art-making workshop, administered by non-art therapists.Using art to express a medical/cancer journey may give participants, who cannot express their feelings in words, the ability to articulate their experience through art that looks at the creative process rather than the end result - expressive art. MATERIALS AND METHODS: This mixed methods study examined the use of art to express the cancer journey of participants. Twenty-eight adults participated in a one-time expressive arts workshop conducted by non-professional art therapists at a military medical center. The five domains of the Emotion Thermometer were analyzed to determine if the pre-event and post-event assessment results would differ. The Silver Drawing Test and Draw-a-Story assessment tools were used to identify emotions and attitudinal stance on six separate five-point scales. A qualitative analysis was done using the phenomenological method of the post-interviews that facilitated open expression to identify themes. RESULTS: A significant difference was found between the pre-event and post-event analyses using the Emotion Thermometer, with post-assessment results revealing lower levels in the three domains of distress, anxiety, and depression. The Silver Drawing Test and Draw-a-Story were analyzed for six components using a five-point scale, with the highest scores being content/meaning, ability to combine, and creativity. A qualitative analysis was done using the phenomenological method; post-interviews provided information to categorize the experience into four key themes: environment, connection, emotions, and discoveries. CONCLUSIONS: Using art to express one's journey through cancer allows participants to articulate that journey "beyond language." This mixed methods study was administered by five non-professional art therapists with three having no expressive arts background. This study established that an expressive arts workshop can effectively be conducted by non-professional art therapists. The team of non-professional art therapists, who facilitated this one-time art-making workshop, demonstrated that a military member's stress can be decreased by giving them "a voice" through expressive art.

Online cancer communities as informatics intervention for social support: conceptualization, characterization, and impact.

Objectives: The Internet and social media are revolutionizing how social support is exchanged and perceived, making online health communities (OHCs) one of the most exciting research areas in health informatics. This paper aims to provide a framework for organizing research of OHCs and help identify questions to explore for future informatics research. Based on the framework, we conceptualize OHCs from a social support standpoint and identify variables of interest in characterizing community members. For the sake of this tutorial, we focus our review on online cancer communities. Target audience: The primary target audience is informaticists interested in understanding ways to characterize OHCs, their members, and the impact of participation, and in creating tools to facilitate outcome research of OHCs. OHC designers and moderators are also among the target audience for this tutorial. Scope: The tutorial provides an informatics point of view of online cancer communities, with social support as their leading element. We conceptualize OHCs according to 3 major variables: type of support, source of support, and setting in which the support is exchanged. We summarize current research and synthesize the findings for 2 primary research questions on online cancer communities: (1) the impact of using online social support on an individual's health, and (2) the characteristics of the community, its members, and their interactions. We discuss ways in which future research in informatics in social support and OHCs can ultimately benefit patients.

Couples surviving prostate cancer: Long-term intimacy needs and concerns following treatment.

Couples surviving prostate cancer face long-term challenges in their relationships as they adapt to chronic illness. Ten couples surviving prostate cancer were brought together in a focus group to discuss their experiences and concerns regarding intimacy in their relationships. During three 30-minute segments, couples described their experiences (a) as couples, (b) as individual men and women in two concurrent break-out groups, and (c) regarding current intimacy and relationship needs. Questions asked of couples focused on (a) the process of being diagnosed and treated for prostate cancer, (b) what the experience was like for them as a couple, (c) what was helpful, harmful, and surprising throughout the experience, (d) what they currently needed most as a couple, and (e) what advice they had for other couples. Findings suggested that men and women think and respond differently to intimacy and relationship challenges that occur as a result of prostate cancer, diagnosis, and treatment. Consequently, healthcare providers in any clinical setting who may interact with prostate cancer survivors must consider the relationship and intimacy needs that are unique to men, women, and couples.

Characterizing Social Networks and Communication Channels in a Web-Based Peer Support Intervention.

Web and mobile (mHealth) interventions have promise for improving health outcomes, but engagement and attrition may be reducing effect sizes. Because social networks can improve engagement, which is a key mechanism of action, understanding the structure and potential impact of social networks could be key to improving mHealth effects. This study (a) evaluates social network characteristics of four distinct communication channels (discussion board, chat, e-mail, and blog) in a large social networking intervention, (b) predicts membership in online communities, and (c) evaluates whether community membership impacts engagement. Participants were 299 cancer survivors with significant distress using the 12-week health-space.net intervention. Social networking attributes (e.g., density and clustering) were identified separately for each type of network communication (i.e., discussion board, blog, web mail, and chat). Each channel demonstrated high levels of clustering, and being a community member in one communication channel was associated with being in the same community in each of the other channels (φ = 0.56-0.89, ps < 0.05). Predictors of community membership differed across communication channels, suggesting that each channel reached distinct types of users. Finally, membership in a discussion board, chat, or blog community was strongly associated with time spent engaging with coping skills exercises (Ds = 1.08-1.84, ps < 0.001) and total time of intervention (Ds = 1.13-1.80, ps < 0.001). mHealth interventions that offer multiple channels for communication allow participants to expand the number of individuals with whom they are communicating, create opportunities for communicating with different individuals in distinct channels, and likely enhance overall engagement.

Dissecting an online intervention for cancer survivors: four exploratory analyses of internet engagement and its effects on health status and health behaviors.

The Internet has been used extensively to offer health education content and also for social support. More recently, we have seen the advent of Internet-based health education interventions that combine content with structured social networking. In many ways this is the Internet equivalent to small group interventions. While we have some knowledge about the efficacy of these interventions, few studies have examined how participants engage with programs and how that might affect outcomes. This study seeks to explore (a) the content of posts and (b) the nature of participant engagement with an online, 6-week workshop for cancer survivors and how such engagement may affect health outcomes. Using methodologies related to computational linguistics (latent Dirichlet allocation) and more standard statistical approaches, we identified (a) discussion board themes; (b) the relationship between reading and posting messages and outcomes; (c) how making, completing, or not completing action plans is related to outcome; and (d) how self-tailoring relates to outcomes. When considering all posts, emotional support is a key theme. However, different sets of themes are expressed in the first workshop post where participants are asked to express their primary concern. Writing posts was related to improved outcomes, but reading posts was less important. Completing, but not merely making, action plans and self-tailoring are statistically associated with future positive health outcomes. The findings from these exploratory studies can be considered when shaping future electronically mediated social networking interventions. In addition, the methods used here can be used in analyzing other large electronically mediated social-networking interventions.

A dual-process model of early substance use: tests in two diverse populations of adolescents.

OBJECTIVE: We tested a dual-process model based on behavioral and emotional regulation constructs, which posits that good self-control and poor regulation make independent contributions and have different types of pathways to outcomes. The utility of the model for predicting substance use was tested in two diverse populations of younger adolescents. METHOD: A survey was administered in classrooms to middle-school students in Westchester County, New York (N = 601) and Honolulu, Hawaii (N = 881). The New York sample was 8% African American, 5% Asian American, 47% Caucasian, 31% Hispanic, and 9% other ethnicity. The Hawaii sample was 21% Asian American, 8% Caucasian, 26% Native Hawaiian/Pacific Islander, 34% Filipino, and 10% other ethnicity. Structural equation modeling analyses tested pathways from the four regulation variables through six hypothesized mediators to a criterion construct of substance use (tobacco, alcohol, and marijuana). RESULTS: Results were replicated across samples and were consistent with prediction. Unique contributions were found for good self-control and poor regulation, including both behavioral and emotional aspects. Good self-control had an inverse effect on substance use primarily through relations to higher levels of protective factors (e.g., academic competence). Poor regulation independently had a risk-promoting effect on substance use through relations to higher levels of risk factors (e.g., negative life events). CONCLUSIONS: Two field studies showed the dual-process model is robust across different populations. Substance prevention programs should consider approaches for enhancing good self-control as well as procedures for reducing poor regulation and minimizing its impact. Extensions to health behaviors including dietary intake and physical activity are discussed.

Hawai'i's multiethnic adolescent and young adult survivors of childhood cancer: are their health behavior risks similar to state and national samples?

Due to toxicities associated with their malignancies and treatments, adolescent and young adult survivors of childhood cancer (AYASCC) are at high risk for developing chronic diseases. This can be compounded by a greater prevalence of unhealthy behaviors relative to similarly aged non-cancer peers. Disparities in health behaviors have been noted for Black and Hispanic AYASCC, but data on Asian American (AA) or Native Hawaiian and Other Pacific Islander (NHOPI) minorities are lacking. The purpose of this study was to help bridge these information gaps by gathering data from Hawai'i AA and NHOPI AYSCC. Telephone surveys were used to collect health behavior data from survivors 13-24 years of age (N=64); 55% of the sample was female, 77% AA or NHOPI, 63% leukemia/lymphoma survivors, and 32% overweight/obese. These were compared to state/national survey data for similarly aged individuals (Youth Risk Behavior Surveillance System data for 13-17 year olds, and Behavioral Risk Factor Surveillance System data for 18-24 year olds). While Hawai'i AYASCC had significantly lower rates of tobacco/alcohol use, a higher proportion did not eat five fruits/vegetables a day (96%) compared to state (83%) and national (78%) samples (P < .001). Although many met age-specific physical activity recommendations, 44% of <18 year olds and 29% of ≥18 year olds still failed to meet national guidelines. Low intake of fruits/vegetables and suboptimal levels of physical activity place these vulnerable, ethnic minority cancer survivors at higher risk for chronic disease. These findings underscore the need to assess and advise survivors about their diet and exercise habits as part of post-treatment care.