Characteristics of cancer patients in internet cancer support groups.
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ABSTRACT:
SUBMITTER: Im EO
PROVIDER: S-EPMC2504028 | biostudies-literature | 2007 Nov-Dec
REPOSITORIES: biostudies-literature
Publications
Characteristics of cancer patients in internet cancer support groups.
Im Eun-Ok EO Chee Wonshik W Liu Yi Y Lim Hyun Ju HJ Guevara Enrique E Tsai Hsiu-Min HM Clark Maresha M Bender Melinda M Shin Hyunjeong H Kim Kyung Suk KS Kim Young Hee YH
Computers, informatics, nursing : CIN 20071101 6
The purpose of this study was to describe characteristics of cancer patients who were attending Internet cancer support groups and to provide direction for future research. A total of 204 cancer patients were recruited through Internet cancer support groups by posting the study announcement on the Web sites of such groups. The participants were asked to fill out Internet survey questionnaires on sociodemographic characteristics and health/disease status. The data were analyzed using descriptive ...[more]
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Project description:BackgroundWe conducted a randomised study to investigate whether providing a self-guided Internet support group to cancer patients affected mood disturbance and adjustment to cancer.MethodsBaseline and 1-, 6- and 12-month assessments were conducted from 2004 to 2006 at a national rehabilitation centre in Denmark. A total of 58 rehabilitation course weeks including 921 survivors of various cancers were randomly assigned to a control or an intervention group by cluster randomisation. The intervention was a lecture on the use of the Internet for support and information followed by participation in an Internet support group. Outcome measures included self-reported mood disturbance, adjustment to cancer and self-rated health. Differences in scores were compared between the control group and the intervention group.ResultsThe effect of the intervention on mood disturbance and adjustment to cancer showed a transient difference at the 6-month follow-up, where the intervention group reported less reduction in anxious preoccupation (P=0.04), helplessness (P=0.002), confusion (P=0.001) and depression (P=0.04). Otherwise no significant effects were observed.ConclusionWe conclude that use of Internet-based support groups in cancer patients still needs to confirm long-lasting psychological effects.
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Project description: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).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.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).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.
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Project description:BACKGROUND:Online Cancer Support Groups (OCSG) are becoming an increasingly vital source of information, experiences and empowerment for patients with cancer. Despite significant contributions to physical, psychological and emotional wellbeing of patients, OCSG are yet to be formally recognised and used in multidisciplinary cancer support programs. This study highlights the opportunity of using Artificial Intelligence (AI) in OCSG to address psychological morbidity, with supporting empirical evidence from prostate cancer (PCa) patients. METHODS:A validated framework of AI techniques and Natural Language Processing (NLP) methods, was used to investigate PCa patient activities based on conversations in ten international OCSG (18,496 patients- 277,805 conversations). The specific focus was on activities that indicate psychological morbidity; the reasons for joining OCSG, deep emotions and the variation from joining through to milestones in the cancer trajectory. Comparative analyses were conducted using t-tests, One-way ANOVA and Tukey-Kramer post-hoc analysis. FINDINGS:PCa patients joined OCSG at four key phases of psychological distress; diagnosis, treatment, side-effects, and recurrence, the majority group was 'treatment' (61.72%). The four groups varied in expression of the intense emotional burden of cancer. The 'side-effects' group expressed increased negative emotions during the first month compared to other groups (p<0.01). A comparison of pre-treatment vs post-treatment emotions showed that joining pre-treatment had significantly lower negative emotions after 12-months compared to post-treatment (p<0.05). Long-term deep emotion analysis reveals that all groups except 'recurrence' improved in emotional wellbeing. CONCLUSION:This is the first empirical study of psychological morbidity and deep emotions expressed by men with a new diagnosis of cancer, using AI. PCa patients joining pre-treatment had improved emotions, and long-term participation in OCSG led to an increase in emotional wellbeing, indicating a decrease in psychological distress. It is opportune to further investigate AI in OCSG for early psychological intervention as an adjunct to conventional intervention programs.
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Project description:Introduction Considerable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes. Methods and analysis Guided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson’s five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes. Ethics and dissemination The use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users. PROSPERO registration number CRD42021250046.
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