Facilitating online support groups for cancer patients: the learning experience of psycho-oncology clinicians (original) (raw)
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Establishing best practices in cancer online support groups: protocol for a realist review
BMJ Open, 2021
IntroductionConsiderable 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 analysisGuided 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 m...
Supportive Care in Cancer, 2013
Purpose The purpose of the research described here is to assess the overall effectiveness of the workshop format as a Knowledge Exchange (KE) strategy in (1) disseminating scientific evidence, clinical experience, and systems information related to professionally led Online Support Groups (OSG) for cancer survivors and (2) facilitating the implementation of this intervention by a select group of end users-decision makers and clinical leads in psychosocial supportive care. Methods The KE-Decision Support (KE-DS) Model, operationalizing the Health Technology Approach, guided the development of pre-and postworkshop questionnaires, and a follow-up questionnaire administered 5 months after the workshop. Questionnaire results were categorized according to participants' responses to these elements: methods of engagement, evidence (scientific, experiential, systems) and the delivery of this evidence, and external factors at the institutional level, such as administrative support, budgetary issues, etc., that influence decision-maker abilities and strategies.
"Objective: To compare the experiences of women with metastatic breast cancer (MBC) in computer-mediated and face-to-face support groups. Method: Interviews from 18 women with MBC, who were currently in computer-mediated support groups (CMSGs), were examined using interpretative phenomenological analysis. The CMSGs were in an asynchronous mailing list format; women communicated exclusively via email. All the women were also, or had previously been, in a face-to-face support group (FTFG). Results: CMSGs had both advantages and drawbacks, relative to face-to-face groups (FTFGs), for this population. Themes examined included convenience, level of support, intimacy, ease of expression, range of information, and dealing with debilitation and dying. CMSGs may provide a sense of control and a greater level of support. Intimacy may take longer to develop in a CMSG, but women may have more opportunities to get to know each other. CMSGs may be helpful while adjusting to a diagnosis of MBC, because women can receive support without being overwhelmed by physical evidence of disability in others or exposure to discussions about dying before they are ready. However, the absence of nonverbal cues in CMSGs also led to avoidance of topics related to death and dying when women were ready to face them. Agendas for discussion, the presence of a facilitator or more time in CMSGs may attenuate this problem. Significance of results: The findings were discussed in light of prevailing research and theories about computer-mediated communication. They have implications for designing CMSGs for this population."
2010
Abstract We studied the success and success factors of online support groups (OSGs) for patients, and the motives and goals of people who start such groups. We interviewed 23 webmasters of OSGs for patients with breast cancer, fibromyalgia and arthritis. The majority were women (n= 20) and most were patients (n= 21). Analysis of the interviews revealed that webmasters had altruistic and intrinsic motives for initiating an online support group.
Optimizing use of written peer support as a supportive resource in cancer: Focus group insights
Psycho-Oncology
Purpose: Cancer survivors frequently describe wanting to learn from others who have had similar diagnoses or treatments (peer support). We conducted focus groups to investigate hematopoietic stem cell transplant survivors' attitudes and preferences regarding accessing written peer support through a website. Although written peer support does not allow for interpersonal interactions with peers, it could increase transplant recipients' access to evidence-based benefits of informational and emotional peer support. Methods: We conducted four videoconference focus groups with 34 adult transplant survivors who were diverse in their medical and sociodemographic characteristics and geographic location. Discussions were recorded, transcribed, and content analyzed. Results: Many participants reported need for information about transplant beyond what they received from their healthcare providers. Needs varied across participants, as did preferences for characteristics and timing of information optimally This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
The increased usage of online cancer support groups as a resource for health-related information and social support has sparked numerous discussions about the role of online support in healthcare. However, little is known about the role of social-networking groups focused on supporting adolescents and young adults (AYAs) dealing with cancer. The current investigation report findings from a content analysis designed to explore how AYAs use an online support group to meet their psychosocial needs. Overall, members of the community focused on exchanging emotional and informational support, coping with difficult emotions through expression, describing experiences of being an AYA dealing with cancer through language (metaphors), enacting identity through evaluations of the new normal (life with and after cancer), and communicating membership as an AYA with cancer. This study highlights the unique needs of the AYA cancer community and offers a preliminary roadmap for practitioners, and network members, such as family and friends, to attempt to meet the needs of this unique community.
Development of a support group using a virtual space for cancer patients
International Journal of Web Based Communities, 2014
We report findings from a chat log analysis of a support group in which 2-5 patients and one or two facilitators chatted in a virtual space; weekly sessions lasted 1.5 hrs. each, and we followed them over five years. In the virtual space, participants were represented by avatars with emotional expressions. Chat messages were analysed with a text-mining tool, exploring whether positive emotion words (e.g., 'happy'), medicine-related words (e.g., 'symptoms'), and informational/emotional-support messages (giving and receiving) would increase over time. We found that frequency of positive emotion words increased in Years 1-3 and remained constant thereafter; medical-related words did not increase until Year 5. Support messages increased from Years 1 to 3. Analysis of messages indicated that the patients' and facilitators' conversational roles changed as a sense of community emerged. The virtual support group appeared to promote positive emotions, trust among members, and mutual supportive relationships within the group.
JMIR Cancer, 2015
Development of psychological interventions delivered via the Internet is a rapidly growing field with the potential to make vital services more accessible. However, there is a corresponding need for careful examination of factors that contribute to effectiveness of Internet-delivered interventions, especially given the observed high dropout rates relative to traditional in-person (IP) interventions. Research has found that the involvement of an online therapist in a Web-based intervention reduces treatment dropout. However, the role of such online therapists is seldom well articulated and varies considerably across programs making it difficult to discern processes that are important for online therapist involvement.In this paper, we introduce the concept of "therapeutic facilitation" to describe the role of the online therapist that was developed and further refined in the context of a Web-based, asynchronous psychosocial intervention for couples affected by breast cancer called Couplelinks. Couplelinks is structured into 6 dyadic learning modules designed to be completed on a weekly basis in consultation with a facilitator through regular, asynchronous, online text-based communication.Principles of therapeutic facilitation derived from a combination of theory underlying the intervention and pilot-testing of the first iteration of the program are described. Case examples to illustrate these principles as well as commonly encountered challenges to online facilitation are presented. Guidelines and principles for therapeutic facilitation hold relevance for professionally delivered online programs more broadly, beyond interventions for couples and cancer.