[Show abstract][Hide abstract] ABSTRACT: Purpose Internet support group (ISG) members benefit from receiving social support and, according to the helper therapy principle, by providing support to others. To test the mental health benefits of providing support to others, this trial compared the efficacy of a standard ISG (S-ISG) and an enhanced prosocial ISG (P-ISG). Methods A two-armed randomized controlled trial with 1-month pretest and post-test assessments was conducted with women (N ϭ 184) diagnosed in the past 36 months with nonmetastatic breast cancer who reported elevated anxiety or depression. Women were randomly assigned to either the S-ISG or P-ISG condition. Both conditions included six professionally facilitated live chat sessions (90-minute weekly sessions) and access to an asynchronous discussion board; P-ISG also included structured opportunities to help and encourage others. Results Relative to the S-ISG, participants in the P-ISG condition exhibited more supportive behaviors (emotional, informational, and companionate support), posted more messages that were other-focused and fewer that were self-focused, and expressed less negative emotion (P Ͻ .05). Relative to the S-ISG, participants in the P-ISG condition had a higher level of depression and anxiety symptoms after the intervention (P Ͻ .05). Conclusion Despite the successful manipulation of supportive behaviors, the P-ISG did not produce better mental health outcomes in distressed survivors of breast cancer relative to an S-ISG. The prosocial manipulation may have inadvertently constrained women from expressing their needs openly, and thus, they may not have had their needs fully met in the group. Helping others may not be beneficial as a treatment for distressed survivors of breast cancer.
Journal of Clinical Oncology 11/2014; 32. · 18.04 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The objective was to test the discriminatory power of a 25-item distress screening tool for use among cancer survivors. We used a measure of item discrimination to determine which items perform better than others at identifying those at greatest risk of distress.
Quality of Life Research 06/2014; · 2.86 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Primary Care Providers (PCPs) can be instrumental in helping to prepare patients for referral to cancer treatment. It has been suggested that PCPs can have an important impact on priming patients about the possibility of receiving care within a cancer treatment clinical trial (CCT). However, little is understood about how to effectively engage primary care providers in educating patients about trials. Data were collected as part of two qualitative research projects about primary care providers' role in referral to treatment and to CCTs. Participants were 27 PCPs who agreed to take part in qualitative face-to-face or telephone interviews and serve predominantly underserved, minority populations. Interviews identified a number of factors influencing referral to oncologists, including patients' insurance coverage, location and proximity to treatment facilities, and the strength of ongoing relationships with and/or previous experience with a specialist. PCPs overwhelmingly expressed disinterest in discussing any treatment options, including CCTs. Misconceptions about quality of care received through trials were also common, presenting a deterrent to discussion. PCPs need targeted, evidence-based educational interventions to appropriately address their concerns about cancer clinical trials, enhance provider communication skills, and alter patient referral behavior. Steps must also be taken to strengthen communication between oncologists and referring PCPs.
Journal of Cancer Education 05/2014; · 0.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is important to develop interventions to help patients live fuller lives. We sought to identify key components of quality of life (QOL) in determining therapeutic decision making and overall value of life extension in patients with NSCLC.
The Journal of community and supportive oncology. 01/2014; 12(1):6-12.
[Show abstract][Hide abstract] ABSTRACT: The Cancer Support Community (CSC) provides psychosocial support to people facing cancer in community settings. The purpose of this study was to evaluate the compatibility, effectiveness, and fidelity of the Situation-Choices-Objectives-People-Evaluation-Decisions (SCOPED) question-listing intervention at three CSC sites. Between August 2008 and August 2011, the Program Director at each CSC site implemented question-listing, while measuring patient distress, anxiety, and self-efficacy before and after each intervention. We analyzed the quantitative results using unadjusted statistical tests and reviewed qualitative comments by patients and the case notes of Program Directors to assess compatibility and fidelity. Program Directors implemented question-listing with 77 blood cancer patients. Patients reported decreased distress (p = 0.009) and anxiety (p = 0.005) and increased self-efficacy (p < 0.001). Patients and Program Directors endorsed the intervention as compatible with CSC's mission and approach and feasible to implement with high fidelity. CSC effectively translated SCOPED question-listing into practice in the context of its community-based psychosocial support services at three sites.
[Show abstract][Hide abstract] ABSTRACT: Psychological distress has been recognized as having a significant effect upon cognitive and emotional functioning, quality of life, and in some populations increased costs of care. Screening for distress and provision of psychosocial care in oncology treatment settings has been identified as a future accreditation standard by the American College of Surgeons Commission on Cancer (CoC). Because there are few available models of programs of distress screening and referral to inform oncology social workers and other members of the psychosocial support team with planning their own programs, this article seeks to provide exemplars of best practices that are currently in place in four different settings where psychosocial support is provided to people living with cancer and their families. Each program will provide an overview of how it was successfully established and its contribution toward evolving evidence-informed best practices.
Journal of Psychosocial Oncology 11/2012; 30(6):694-714. · 1.04 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: In partnership, Cancer Support Community and LIVESTRONG developed Cancer Transitions: Moving Beyond TreatmentTM to meet the needs of post treatment cancer survivors. This six week community based intervention aims to modify health behaviors through the integration of health education, emotional support, exercise and nutrition to improve health outcomes of cancer survivors. The 2007 evaluation included 134 survivors up to one year post active treatment; 87% female; 75% white; mean age 55. Data was collected using the SF-12 to show change over time in the mental health component summary (MCS) and physical component summary (PCS) at baseline, 6, 18 and 30 weeks. At baseline, 17% reported their health as fair with over half overweight or obese. 50% had one or more comorbid condition including diabetes; HBP; heart disease; and psychological problems. Results indicated that when compared to baseline, MCS was significantly greater at 6 weeks (p=0.042), 18 weeks (p=0.001), 30 weeks (p=0.005), and PCS was significantly greater at 18 weeks (p=0.044) and 30 weeks (p=0.011). Levels of physical activity increased (p=0.002) peaking at 18 weeks. This corresponded to a mean increase from baseline levels of 614 minutes of total activity per week. The proportion of participants reporting low level of physical activity decreased from 27% at baseline to 18% at 6 weeks, 10% at 18 weeks and 18% at 30 weeks. Fat- and fiber-related dietary habits improved when compared to baseline levels. The dietary score was significantly lower indicating better dietary habits at 6, 18 and 30 weeks (p<0.00).
140st APHA Annual Meeting and Exposition 2012; 10/2012
[Show abstract][Hide abstract] ABSTRACT: Background: The Open to Options pilot project provides one-on-one decision support to hematological cancer patients in 3 sites nationwide. Methods: Facilitators provide support using an evidence-based decision-making model SCOPED (Situation-Choices-Objectives-People-Evaluation-Decisions) to prompt patients to list questions about diagnosis and treatment, including the option of a cancer clinical trial (CCT). Patients complete pre- and post-session surveys, and at 30 and 90 days. Distress, anxiety and question self-efficacy are measured using a 10-point scale. For a subset, outcomes include use of the question list during their oncology visit. Results: Three facilitators have used the SCOPED question-listing process with 69 patients (14% ethnic minority). Among patients, there was a decrease in distress (p=0.065) and anxiety (p=0.008) and increase in question self-efficacy (p<0.001). Nearly half (51%) reported discussing CCTs with their oncologist. Currently, 44 have made a treatment decision, and 4 (9%) of these chose treatment through a CCT. At 30 days, 28 of 35 patients (80%) reported bringing their question list to their oncology appointment. Among those who brought their question list (n=28), 93% referred to it, 33% showed it to their oncologist, 86% thought the question list contributed to a more productive appointment, and 86% reported their oncologist answered most of their questions. Participants reported the question list: gave structure to the meeting like an agenda; clarified my thoughts; and was empowering. Conclusion: Early findings suggest use of SCOPED question-listing for blood cancer patients may improve coping and decision-making skills and may lead to enhanced patient dialogue and access to clinical trials.
139st APHA Annual Meeting and Exposition 2011; 10/2011
[Show abstract][Hide abstract] ABSTRACT: The Internet can increase access to psychosocial care for breast cancer survivors through online support groups. This study will test a novel prosocial online group that emphasizes both opportunities for getting and giving help. Based on the helper therapy principle, it is hypothesized that the addition of structured helping opportunities and coaching on how to help others online will increase the psychological benefits of a standard online group.
A two-armed randomized controlled trial with pretest and posttest. Non-metastatic breast cancer survivors with elevated psychological distress will be randomized to either a standard facilitated online group or to a prosocial facilitated online group, which combines online exchanges of support with structured helping opportunities (blogging, breast cancer outreach) and coaching on how best to give support to others. Validated and reliable measures will be administered to women approximately one month before and after the interventions. Self-esteem, positive affect, and sense of belonging will be tested as potential mediators of the primary outcomes of depressive/anxious symptoms and sense of purpose in life.
This study will test an innovative approach to maximizing the psychological benefits of cancer online support groups. The theory-based prosocial online support group intervention model is sustainable, because it can be implemented by private non-profit or other organizations, such as cancer centers, which mostly offer face-to-face support groups with limited patient reach.
[Show abstract][Hide abstract] ABSTRACT: Counsellor familiarity and engagement with technology-mediated communication represents an important factor in the ability to implement support programs to cancer patients. This study describes the experiences of a cohort of expert psycho-oncology counsellors who learned to facilitate online support groups (OSGs) and identifies the important elements of their learning experience that led to their engagement. PROCEDURE AND METHOD: Six psycho-oncology counsellors were trained to facilitate OSGs and later facilitated OSGs in their own practice context. They subsequently reflected on and discussed their experiences with OSGs over time: in a panel discussion within 6 months of training, and in two focus groups. A participatory method was used to describe and interpret key elements of the learning process.
Three themes of the counsellors' learning experience emerged: immersion in experiential learning, perceptions of clinical value and benefit, and overcoming challenges with adapted skills. Counsellors described components of their experiential learning: co-facilitating online cancer support groups with an expert, debriefing online, and participating in an online peer supervision group, as critical to their becoming engaged. Despite initial challenges, the counsellors learned new skills, and adapted known clinical skills, to the text-only environment.
With appropriate training and practice over time, counsellors familiar with delivering face-to-face support groups to cancer patients became skilled and engaged in leading OSG's for cancer patients. Learning to facilitate OSGs shifted practice by significantly expanding the scope of services they were able to provide their patients and has implications for expanding access to support services.
[Show abstract][Hide abstract] ABSTRACT: Accurately detecting emotional expression in women with primary breast cancer participating in support groups may be important for therapists and researchers. In 2 small studies (N = 20 and N = 16), the authors examined whether video coding, human text coding, and automated text analysis provided consistent estimates of the level of emotional expression. In Study 1, the authors compared coding from videotapes and text transcripts of face-to-face groups. In Study 2, the authors examined transcripts of online synchronous groups. The authors found that human text coding significantly overestimated Positive Affect and underestimated Defensive/Hostile Affect compared with video coding. They found correlations were low for Positive Affect but moderate for negative affect between Linguistic Inquiry Word Count (LIWC) and video coding. The implications of utilizing text-only detection of emotion are discussed.
Journal of Consulting and Clinical Psychology 07/2008; 76(3):517-23. · 4.85 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
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.
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.
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.
[Show abstract][Hide abstract] ABSTRACT: Diagnosis and treatment of cancer has been associated with both posttraumatic stress disorder (PTSD) symptoms and posttraumatic
growth (PTG). This cross-sectional study sought to assess the frequency, common predictors, and interrelationships of PTSD
symptoms and PTG in breast cancer survivors (n=65). In this sample, symptoms of PTSD and reports of PTG were common and were not significantly related to one another.
Greater social constraints on talking about breast cancer and perception of cancer as a traumatic stressor were associated
with greater PTSD symptomatology. Younger age and perception of cancer as a traumatic stressor were associated with greater
PTG. Findings suggest the central role of subjective appraisal in adjustment to cancer. Psychosocial interventions should
be sensitive to the potential for PTG, both in treatment design and in assessment of outcomes.
Journal of Clinical Psychology in Medical Settings 12/2007; 14(4):308-319. · 1.49 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Emotional expression and cognitive efforts to adapt to cancer have been linked to better psychological adjustment. However, little is known about the relationship between linguistic indicators of emotional and cognitive coping efforts and corresponding self-report measures of related constructs. In this study, we sought to evaluate the interrelationships between self-reports of emotional suppression and linguistic indicators of emotional and cognitive coping efforts in those living with cancer. Seventy-one individuals attending a community cancer support group completed measures of emotional suppression and mood disturbance and provided a written narrative describing their cancer experience. Self-reports of emotional suppression were associated with more rather than less distress. Although linguistic indicators of both emotional expression and cognitive processing were generally uncorrelated with self-report measures of emotional suppression and mood disturbance, a significant interaction was observed between emotional suppression and use of cognitive words on mood disturbance. Among those using higher levels of emotional suppression, increasing use of cognitive words was associated with greater levels of mood disturbance. These findings have implications for a) the therapeutic use of emotion in psychosocial interventions and b) the use of computer-assisted technologies to conduct content analysis.
Journal of Behavioral Medicine 09/2006; 29(4):335-45. · 3.10 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: We hypothesized that (a) members of homogeneous Parkinson's disease (PD) Internet groups would show more commitment and attraction than heterogeneous groups and (b) members in homogeneous groups would show better outcomes. Six PD support groups, three heterogeneous and 3 homogeneous groups were composed on the basis of age and time since diagnosis. Cohesion, based on commitment and attraction, was measured using text analysis software measuring (a) the frequency of hope, positive feelings and thoughts, and affection linked to group as a target and (b) the frequency of "we," "our," and other words of inclusion. Pre-post changes were measured by depression, quality of life, and severity of PD. Multivariate analysis found that homogeneously composed groups were significantly more attracted and committed to their groups. A repeated measures multivariate analysis found that homogeneous groups showed significantly greater positive changes. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Group Dynamics Theory Research and Practice 11/2005; 9(4):239-250. · 0.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: (A) Will PD patients participate in online, professionally led support groups? (B) What are their demographics characteristics and PD severity? (C) Are such groups beneficial? (D) Should patients be grouped for stage of disease? Depression and quality of life were assessed. Sixty-six people were assigned to a 20-week, professionally facilitated online support group. Participants were assigned to one of 2 group types based on patient similarity: homogeneous and heterogeneous. PD patients appear to readily enroll in online groups. Compared to PD patients in traditional support groups, the online were younger, less depressed and had higher quality of life. Dropouts (39%) were high. Overall, patients showed improved quality of life; no overall changes were observed in depression. Participants in the homogenous groups reported a significant decrease in depression.
Social Work in Health Care 02/2005; 42(2):23-38. · 0.62 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This study examines the relationship between cancer support groups' normative regulation and patient outcomes. Cancer patients (N = 289) in 54 groups were studied through the use of a cross-sectional, treatment dosage design. Outcomes were assessed by the Center for Epidemiological Studies Depression Scale and the Functional Assessment of Cancer Therapy, a quality of life measure commonly used in studies of cancer patients. The framework for assessing normative regulations was based on the degree to which patients matched leader norms. This approach to indexing members' perceptions of normative regulations proved to be a successful strategy. The more a participant view matched those of the leaders, the greater the likelihood they benefited from the group. The content of the norms added an independent effect on positive outcomes. Participants who saw their groups as approving of aggressive-competitive behaviors and the intense expression of emotions were less likely to show positive outcomes. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Group Dynamics Theory Research and Practice 11/2004; 8(4):265-276. · 0.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Despite advances in the treatment of many side effects associated with chemotherapy, alopecia remains an issue that is difficult to resolve. Chemotherapy-induced alopecia (CIA) is a condition that can have profound psychosocial and quality-of-life consequences, resulting in anxiety, depression, a negative body image, lowered self-esteem, and a reduced sense of well-being. Patients who fear CIA may sometimes select regimens with less favorable outcomes or may refuse treatment. When supporting patients with CIA, health care providers should use an individualized approach with a focus placed on the actual moment of hair loss. Education, support groups, and self-care strategies are important components of any management approach. No treatment modality for preventing CIA has been clearly shown to be effective. Recent evidence suggests that new scalp hypothermic regimens may be safe and effective. There remains a critical need for effective new approaches to this problem.
Supportive Care Cancer 09/2004; 12(8):543-9. · 2.65 Impact Factor