Digital literacy linked to engagement and psychological benefits among breast cancer survivors in Internet-based peer support groups.

OBJECTIVE: Internet-based peer support groups (ISGs) represent an innovative, scalable approach to addressing information and support needs of cancer survivors. However, this innovation may not benefit survivors equally due to population variance in digital literacy. This study examined how digital literacy influences level of engagement in and psychological benefits from participating in ISGs for breast cancer (N = 183). METHODS: Secondary analysis of data from a randomised trial of ISGs that included behavioural measures of engagement, subjective ratings and psychological distress symptoms. RESULTS: Digital literacy was positively related to education level (p = .005). Relative to women with high digital literacy, those with lower digital literacy were more likely to report difficulties using the ISG and to value the user's guide and facilitator assistance (all p's < .05). Digital literacy was negatively correlated with computer anxiety pre-intervention, distress before and after online chat during the intervention and post-intervention depressive symptoms (all p's < .05). CONCLUSION: Low digital literacy is associated with computer anxiety and barriers to ISG use, as well as distress during and after ISG use. Digital literacy must be taken into account when designing or delivering innovative digital interventions for cancer survivors.

Management of the anxious dental patient.

The anxious patient in the dental office reacts with panic and inability to cooperate with necessary treatment. It is the dentist's responsibility to recognize and assuage the patient's anxiety on both psychological and medical levels. The diagnosis, etiology and treatment of anxiety will be investigated and presented as any other disease entity. It is an illness that contributes to dental neglect and subsequent pain, disease and dysfunction. The purpose of this paper is to discuss the recognition and etiology of patient anxiety and to offer treatment solutions and behavior modification techniques. The discussion will include psychological insight as well as the use of anxiolytics and nitrous oxide-oxygen (N2O-O2) sedation to ameliorate the symptoms. Finally, a presentation will be made of the modern application of philosophic dicta of Plato and Aristotle in which the doctor is considered a philosopher who values the concept of self-healing based on the doctor-patient relationship. These techniques and concepts of totality in diagnosis and treatment are applicable today just as they were 17 centuries ago.

Clinical identification of head and neck lymphadenopathy: a diagnostic obligation.

The purpose of this article is to reinforce the need for all dental clinicians to perform a complete lymph node examination on every patient, regardless of age, gender, or chief complaint. As early diagnosis provides for the best prognosis, head and neck lymph node palpation may be the earliest indicator of infection or neoplasia. This article provides the rationale for lymph node examination, the palpation techniques for the clinician to utilize, and the anatomic locations and descriptions of lymph nodes.

Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer.

BACKGROUND: Less than 5% of breast cancer patients participate in clinical trials. To increase patients' awareness and access to trials, we created BreastCancerTrials.org, a clinical trial matching website. BreastCancerTrials.org matched patients to trials based on their self-reported breast cancer history. It also provided a messaging platform through which patients could self-refer themselves to participating research sites. OBJECTIVE: To assess adoption by research sites, acceptability to patients, and patients' accuracy in providing information to BreastCancerTrials.org. METHODS: We approached 13 research sites in Northern California to list their trials on BreastCancerTrials.org. For adoption, we examined the willingness of contacted research sites to collaborate with BreastCancerTrials.org. For acceptability, we analyzed usage statistics of visitors who completed the BreastCancerTrials.org health history questionnaire in the first 14 months after launch and surveyed users who visited the website during its first year about their experience. For accuracy, we compared the self-reported health history of 20 patients against their medical records. The health history questionnaire was divided into four sections: About Me, personal information including date of birth and sex; My Health as of Today, current status including cancer stage, menopausal status, and sites with evidence of disease; My Cancer, diagnostic information such as hormone and human epidermal growth factor receptor 2 status; and My Treatment, an itemized record of past treatment including responses to therapy. RESULTS: A total of 12 sites contributed 55 trials. Regarding acceptability, 733 visitors registered on the website; 428 reported their health history; and 407 matched to at least one trial. Of 375 patients who were sent a survey, 75 responded (20%); 23 of the 75 (31%) contacted a research site, 12 of the 23 (52%) were eligible for a trial, and 5 of the 12 (42%) reported enrolling. As for accuracy, 20 clinic visitors reported 1456 health history items, 1324 of which matched their clinic record (90.93%). CONCLUSIONS: BreastCancerTrials.org was adopted by research sites. Patients found it acceptable and were able to provide accurate information for trial matching. Based on our findings, we launched an upgraded version of BreastCancerTrials.org as a national service in October 2008.

Standard versus prosocial online support groups for distressed breast cancer survivors: a randomized controlled trial.

BACKGROUND: 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. METHODS/DESIGN: 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. DISCUSSION: 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. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01396174.

A holistic approach to a rare pathology.

A case of cystic hygroma (CH), a congenital lymph-filled multicystic hamartoma of the neck, with a holistic approach to patient management is presented. The stigma of the CH imposed by attending physicians, dentists, parents, teachers and peers affected the psychological development of this patient since her diagnosis in childhood. Although surgery relieves the threat of airway obstruction and may improve the esthetic appearance of the CH, the patient may be isolated and traumatized by the ignorance and superstitions of the individuals she encounters on a daily basis.

Gender and online cancer support groups: issues facing male cancer patients.

BACKGROUND: Men are underrepresented in cancer support groups. They emphasize information seeking rather than emotional support and are less likely to express negative emotion critical for change. Three hypotheses were tested; men compared to women express fewer negative emotions, especially about their cancer, and men experience more fear and apprehension. METHOD: Four online professionally led groups were sampled. Assessments of emotions and fears used 3 text analysis programs. RESULTS: Women expressed more negative emotions. These differences were more pronounced when discussing their cancer. Men experienced greater anxiety/fear, which may explain their under representation. CONCLUSIONS: The dual dilemma of attracting men to support groups and directing them to emotional issues represents a challenge to health providers.

Psychological characteristics of people with Parkinson's disease who prematurely drop out of professionally led Internet chat support groups.

Researchers of Internet health interventions have begun to address the problems of high attrition rates. Attrition has been a problem for psychosocial interventions for nearly 50 years. It is ubiquitous no matter what the type of intervention or the modality of delivery. Consistent are the repeated findings that demographic characteristics are the most robust variables. We tested the hypothesis that the greater the fear and apprehension experienced in professionally led Internet support groups, the more likely the participants would not complete the 25-week intervention. The sample consisted of 66 people with Parkinson's disease; each participant was assigned to one of six chat groups. To assess psychological states, we used PCAD, a text analysis program analyzing each person's postings during each chat room session. There was a statistically significant difference between those who terminated the group early and those who completed the intervention on the Anxiety-Fear dimension, F=2.35, (6,63), p=0.03. People who dropped out demonstrated higher death and shame anxiety. A number of possible designs for online groups that may reduce premature attrition are discussed.

Fighting spirit expressed by women with breast cancer in professional-and peer-led online support groups: effects on outcomes.

OBJECTIVE: Does fighting spirit reduce depression in women with breast cancer (BC)? METHODS: Unlike previous studies using questionnaires, we assessed fighting spirit by analyzing interaction in BC support groups. Three online groups were studied: synchronous professionally led groups (Life Beyond Cancer), asynchronous professionallyled groups (Bosom Buddies) and asynchronous peer-led bulletin board groups (Peer Bulletin Boards). The samples were predominantly Caucasian, married, highly educated, and had early stage cancer. We used a content analysis program, DTSearch, to measure fighting words expressed in the groups. Linear regression was used to examine the relation between fighting words and follow-up depression, controlling for baseline depression and total word count. We also compared samples on the number of fight words expressed. RESULTS: We found that viewing their cancer as a fight or battle would result in lowered depression was disconfirmed in all samples. The peer groups had twice as many fight words compared to professionally led groups. CONCLUSION: Previous studies as well as the current one strongly support the null hypothesis. Our finding based on a behavioral measure of fighting spirit does add to previous studies results. Unfortunately the common lay perspective for cancer sufferers is that not having fighting spirit would mean a psychological incapacity. The message is that "brave and good people defeat cancer and that cowardly and undeserving people allow it to kill them". This view can create guilt, self flagellation and stress in woman already facing a difficult disease.

Self-help on-line: an outcome evaluation of breast cancer bulletin boards.

Many breast cancer patients find help from on-line self-help groups, consisting of self-directed, asynchronous, bulletin boards. These have yet to be empirically evaluated. Upon joining a group and 6 months later, new members (N=114) to breast cancer bulletin boards completed measures of depression (CES-D), growth (PTGI) and psychosocial wellbeing (FACT-B). Improvement was statistically significant on all three measures. This serves as a first validation of Internet bulletin boards as a source of support and help for breast cancer patients. These boards are of particular interest because they are free, accessible and support comes from peers and not from professional facilitators.

The effects of self-help and psychotherapy intervention on child loss: the limits of recovery.

Results of a longitudinal study of the effects of bereaved parents' participation in a self-help group and in psychotherapy are presented. Active self-help group participants evidenced unique changes in attitudes about bereavement. Reasons for lack of differences in mental health, marital, and parental roles are discussed.

The impact of self-help groups on the mental health of widows and widowers.

Thirty-six widowers and 466 widows were studied over a one-year period to determine the impact of self-help groups on their mental health. Participants were compared to similarly bereaved psychotherapy patients as well as to those who sought no formal help. Significant positive changes were found to have occurred only for those who participated actively in the self-help groups.

Comparing standard versus prosocial internet support groups for patients with breast cancer: a randomized controlled trial of the helper therapy principle.

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 = 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 < .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 < .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.

Adopting a survivor identity after cancer in a peer support context.

PURPOSE: The term cancer survivor can refer to individuals from diagnosis through the rest of their life. However, not all people with cancer identify as a survivor, and underlying factors and correlates are yet to be well-explored empirically. METHODS: Study 1 surveyed men in a prostate cancer peer support network (n = 514), exploring psychosocial variables related to adopting a survivor identity. Study 2 interviewed 160 women with breast cancer in an online support group and collected observational data, assessing how survivor identity relates to perceptions of and participation in online support groups. RESULTS: For men, survivor identity (35 %) was related to lower levels of threat appraisal (p = .000), more deliberate rumination (p = .042), gaining greater understanding of cancer experience through peers (p = .041) and a higher, though marginally significant, level of posttraumatic growth (p = .052). Women adopting a survivor identity (50 %) had higher rates of online support group posts (p = .048), a greater feeling of mattering to the group (p = .002), rated the group as more helpful (p = .004 to .01) and had less difficulty in relating to the group (p = .002) than women not identifying as a survivor. CONCLUSIONS: Survivor identity was related to active and positive engagement with peers, and cognitive processing. IMPLICATIONS FOR CANCER SURVIVORS: While the cancer survivor metaphor may be salient for some people diagnosed with cancer, many did not associate with the term, highlighting the complexity surrounding survivorship discourse and the need to be sensitive to unique individual needs in psychosocial interventions that involve groups.

The role of insightful disclosure in outcomes for women in peer-directed breast cancer groups: a replication study.

This study was stimulated by the recent publication (Health Commun 2006;19(2):133-142) who reported the effects of insightful disclosure on outcomes in' peer-led internet breast cancer support groups. The present study attempted to replicate their hypotheses using the same methods for coding insightful disclosure as well as parallel outcome measures. Four hypotheses are tested; writing a higher percentage of insightful disclosure words will be associated with: (1) fewer BC concerns; (2) reduction in the emotional distress; (3) better physical health; and (4) few functional limitations. New members (N = 77) to BC bulletin boards (BB) were recruited through BB postings and/or e-mails. We asked them to fill out questionnaires measuring depression and quality of life, when they joined the BB, and again six months later. Two questionnaires (CESD and FACTB [Functional Well being, Physical well being, and Breast cancer Concerns]) were administered and repeated six months later. For two of the four outcome measures (Functional Well being and Breast Cancer Concerns), insightful disclosure played a crucial and significant role, the other two showed a trend toward significance (CESD and Physical well being). The three control variables, stages, years of cancer and level of participation all had effects on the outcomes, varying with the type of outcome measure. The findings, in this study, support Shaw et al. hypotheses. In their study, only one outcome measure, reduction of emotional distress was significant.

Not all negative emotions are equal: the role of emotional expression in online support groups for women with breast cancer.

The repression/suppression of negative emotions has long been considered detrimental for breast cancer (BC) patients, leading to poor coping, progression of symptoms, and general lower quality of life. Therapies have focused on encouraging the expression of negative emotions. While group therapies have proven to be successful for BC patients, no study has looked at the role of expressing negative emotions during the therapeutic interaction. We examined written expressed emotions by women participating in a common form of psychosocial support, Internet based bulletin boards (BBs). Fifty-two new members to BC BBs were studied. They completed measures of quality of life and depression. After 6 months the measures were again assessed and messages during that time were collected and analyzed for emotional content. For the 52 women, results showed that greater expression of anger was associated with higher quality of life and lower depression, while the expression of fear and anxiety was associated with lower quality of life and higher depression. The expression of sadness was unrelated to change scores. Our results serve to challenge the commonly held belief that the expression of all negative emotions are beneficial for BC patients. Instead, expressing specific negative emotions are beneficial, while others are not.

Online support groups for Parkinson's patients: a pilot study of effectiveness.

(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.

Electronic support groups for breast carcinoma: a clinical trial of effectiveness.

BACKGROUND: A recent Pew Charitable Trust study found that 52,000,000 individuals used the Internet to obtain health/medical information. Clinical trials of face-to-face breast carcinoma support groups show evidence of 1) improvement in quality of life, 2) reduction of psychologic symptoms, 3) improvement in coping responses, and 4) a reduction in pain. To the authors' knowledge, a few studies published to date have investigated Internet-delivered electronic support groups (ESGs) for cancer. The most sophisticated is the Comprehensive Health Enhancement Support System (CHESS) program, which provides integrated information, referral, and a newsgroup-based social support program. However, to the authors' knowledge, no studies published to date have examined the impact of a breast carcinoma ESG in a clinical trial. METHODS: Sixty-seven women completed the initial baseline questionnaires, 32 of whom accepted the authors' invitation and began the groups. With regard to geographic location, 49% lived in rural/small towns, 41% lived in medium-sized cities, and 10% lived in large cities. Diagnostic stages of disease were: Stage I, 22%; Stage II, 56%; Stage III, 12%; and other forms, 10%. There were 4 intervention groups, of which 8 participants led by trained Wellness Community (TWC) (a national agency) leaders met for 1.5 hours once a week for 16 weeks. Student t tests for paired outcome data were computed using baseline and postgroup scores. RESULTS: The results of the current study indicated that breast carcinoma patients significantly reduced depression (Center for Epidemiologic Studies-Depression [CES-D] scale) and Reactions to Pain. They also demonstrated a trend toward increases on The Posttraumatic Growth Inventory (PTGI) in two subscales: New Possibilities and Spirituality. Counterintuitively, breast carcinoma patients appeared to demonstrate an increase in emotional suppression. Postinterview results indicated that approximately 67% of patients found the group to be beneficial. Those who withdrew from the groups (20%) demonstrated low scores in their ability to contain anxiety and appeared to be more likely to suppress their thoughts and feelings regarding their illness. CONCLUSIONS: The findings of the current study are encouraging, particularly because it was conducted through TWC, a national agency willing to make this type of intervention readily available at no cost. A limitation of the current study was the lack of randomization and a control group comparison. Although the authors were not able to demonstrate effectiveness without the addition of a control condition, the analysis of pregroup and postgroup outcomes suggests that a randomized trial is worthwhile. Women with a devastating disease will join and commit themselves to an online support group. In addition, because a large percentage of these women were from rural locations, this type of intervention may hold promise for those who have limited access to support groups.