The role of online support groups in empowering individuals affected by prostate cancer

The psychosocial challenges of living with prostate cancer have been well documented. Whilst information and support can help ameliorate these challenges, research points towards several barriers to obtaining support face-to-face. Recent research suggests that online support groups can help empower members to become active healthcare participants. Few studies, however, have examined the role of these groups in the context of prostate cancer. This research programme seeks to examine how, if at all, participation within prostate cancer online support groups empowers members. In Study 1, an analysis of 631 messages posted to prostate cancer online support groups was undertaken to explore the beneficial processes observed in members’ communication. In Study 2, open-ended surveys were employed to collect qualitative data from 147 members to explore their perception of empowering processes and outcomes within the groups. In Study 3, quantitative surveys (n=195) were employed to examine the extent to which members experience these processes and outcomes and the relationship between the two. The findings point towards the existence of several empowering processes, such as informational and emotional support exchange, encountering similar others and the ability to discuss sensitive issues. Empowering outcomes commonly experienced by the members included increased knowledge, the ability to participate in treatment-related decisions, an increased sense of community and enhanced communication with their medical practitioner. The processes significantly predicted the outcomes, with ‘information exchange’ consistently being the most significant predictor. This indicates that the processes, and particularly informational support in these groups, play an important role in empowering members. Although some negative processes have been identified, the positive aspects outweigh the negatives. These findings suggests that prostate cancer online support groups can be an effective and cost-efficient source of support and information for prostate cancer patients and their caregivers, and have a significant impact on their sense of empowerment

The role of online support groups in empowering individuals affected by prostate cancer

The psychosocial challenges of living with prostate cancer have been well documented. Whilst information and support can help ameliorate these challenges, research points towards several barriers to obtaining support face-to-face. Recent research suggests that online support groups can help empower members to become active healthcare participants. Few studies, however, have examined the role of these groups in the context of prostate cancer. This research programme seeks to examine how, if at all, participation within prostate cancer online support groups empowers members. In Study 1, an analysis of 631 messages posted to prostate cancer online support groups was undertaken to explore the beneficial processes observed in members’ communication. In Study 2, open-ended surveys were employed to collect qualitative data from 147 members to explore their perception of empowering processes and outcomes within the groups. In Study 3, quantitative surveys (n=195) were employed to examine the extent to which members experience these processes and outcomes and the relationship between the two. The findings point towards the existence of several empowering processes, such as informational and emotional support exchange, encountering similar others and the ability to discuss sensitive issues. Empowering outcomes commonly experienced by the members included increased knowledge, the ability to participate in treatment-related decisions, an increased sense of community and enhanced communication with their medical practitioner. The processes significantly predicted the outcomes, with ‘information exchange’ consistently being the most significant predictor. This indicates that the processes, and particularly informational support in these groups, play an important role in empowering members. Although some negative processes have been identified, the positive aspects outweigh the negatives. These findings suggests that prostate cancer online support groups can be an effective and cost-efficient source of support and information for prostate cancer patients and their caregivers, and have a significant impact on their sense of empowerment

Discussing uncertainty and risk in primary care: recommendations of a multi-disciplinary panel regarding communication around prostate cancer screening.

BackgroundShared decision making improves value-concordant decision-making around prostate cancer screening (PrCS). Yet, PrCS discussions remain complex, challenging and often emotional for physicians and average-risk men.ObjectiveIn July 2011, the Centers for Disease Control and Prevention convened a multidisciplinary expert panel to identify priorities for funding agencies and development groups to promote evidence-based, value-concordant decisions between men at average risk for prostate cancer and their physicians.DesignTwo-day multidisciplinary expert panel in Atlanta, Georgia, with structured discussions and formal consensus processes.ParticipantsSixteen panelists represented diverse specialties (primary care, medical oncology, urology), disciplines (sociology, communication, medical education, clinical epidemiology) and market sectors (patient advocacy groups, Federal funding agencies, guideline-development organizations).Main measuresPanelists used guiding interactional and evaluation models to identify and rate strategies that might improve PrCS discussions and decisions for physicians, patients and health systems/society. Efficacy was defined as the likelihood of each strategy to impact outcomes. Effort was defined as the relative amount of effort to develop, implement and sustain the strategy. Each strategy was rated (1-7 scale; 7 = maximum) using group process software (ThinkTank(TM)). For each group, intervention strategies were grouped as financial/regulatory, educational, communication or attitudinal levers. For each strategy, barriers were identified.Key resultsHighly ranked strategies to improve value-concordant shared decision-making (SDM) included: changing outpatient clinic visit reimbursement to reward SDM; development of evidence-based, technology-assisted, point-of-service tools for physicians and patients; reframing confusing prostate cancer screening messages; providing pre-visit decision support interventions; utilizing electronic health records to promote benchmarking/best practices; providing additional training for physicians around value-concordant decision-making; and using re-accreditation to promote training.ConclusionsConference outcomes present an expert consensus of strategies likely to improve value-concordant prostate cancer screening decisions. In addition, the methodology used to obtain agreement provides a model of successful collaboration around this and future controversial cancer screening issues, which may be of interest to funding agencies, educators and policy makers

Supportive care needs of men with prostate cancer after hospital discharge: Multi-stakeholder perspectives.

Purpose This study explored the supportive care needs of men with prostate cancer (PCa) after hospital discharge based on the perceptions of multiple stakeholders. Methods Eight semi-structured focus groups and three individual interviews were conducted between September 2019 and January 2020, with 34 participants representing men with PCa, primary and secondary healthcare professionals, and cancer organizations in western Norway. Data was analysed using systematic text condensation. Results Four categories emerged: 1) men with PCa have many information needs which should be optimally provided throughout the cancer care process; 2) various coordination efforts among stakeholders are needed to support men with PCa during follow-up; 3) supportive care resources supplement the healthcare services but knowledge about them is random; and 4) structured healthcare processes are needed to improve the services offered to men with PCa. Variations were described regarding priority, optimal mode and timeliness of supportive care needs, while alignment was concerned with establishing structures within and between stakeholders to improve patient care and coordination. Conclusions Despite alignment among stakeholders’ regarding the necessity for standardization of information and coordination practices, the mixed prioritization of supportive care needs of men with PCa indicate the need for additional individualized and adapted measures.publishedVersio

Decisions to use complementary and alternative medicine (CAM) by male cancer patients: information-seeking roles and types of evidence used

<p>Abstract</p> <p>Background</p> <p>Complementary and Alternative Medicine (CAM) is increasingly popular with cancer patients and yet information provision or discussion about CAM by health professionals remains low. Previous research suggests that patients may fear clinicians' 'disapproval' if they raise the subject of CAM, and turn to other sources to acquire information about CAM. However, little empirical research has been conducted into how cancer patients acquire, and, more importantly evaluate CAM information before deciding which CAM therapies to try.</p> <p>Methods</p> <p>Qualitative study, comprising semi-structured interviews with 43 male cancer patients of varying ages, cancer type and stage of illness, 34 of whom had used CAM. They were recruited from a range of NHS and non-NHS settings in Bristol, England.</p> <p>Results</p> <p>As a result of the lack of CAM information from health professionals, men in this study became either 'pro-active seekers' or 'passive recipients' of such information. Their main information resource was the 'lay referral' network of family, friends and acquaintances, especially females. 'Traditional' information sources, including books, magazines, leaflets and the media were popular, more so in fact than the internet. Views on the internet ranged from enthusiasm or healthy scepticism through to caution or disinterest. CAM information was generally regarded as 'empowering' as it broadened treatment and self-care options. A minority of participants were information averse fearing additional choices that might disrupt their fragile ability to cope. There was general consensus that CAM information should be available via the NHS, to give it a 'stamp of approval', which combined with guidance from informed health professionals, could help patients to make 'guided' choices. However, a small minority of these men valued the independence of CAM from the NHS and deliberately sought 'alternative' information sources and treatment options.</p> <p>Men were selective in identifying particular therapies to use and sceptical about others, basing their choices on forms of 'evidence' that were personally meaningful: personal stories of individuals who had been helped by CAM; the long history and enduring popularity of some therapies; the plausibility of the mechanism of action; a belief or trust in individual therapies or their providers; scientific evidence. Scientific evidence ranked low in the men's personal decision-making about CAM, while it was recognised as important for NHS support for CAM.</p> <p>Conclusion</p> <p>These male cancer patients valued the support and guidance of 'trusted individuals' in making choices about CAM. Trusted health professionals could also play a significant role in helping patients to make informed choices. Any such dialogue must, however, acknowledge the different standards of evidence used by patients and clinicians to evaluate the benefits or otherwise of CAM therapies. Such open communication could help to foster an environment of mutual trust where patients are encouraged to discuss their interest in CAM, rather than perpetuate covert, undisclosed use of CAM with its attendant potential hazards.</p

Nurturing health-related online support groups:exploring the experience of patient moderators

The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved. Thirty-three patient moderators completed an online questionnaire which included a series of open-ended questions. Thematic analysis identified three themes: emergence, empowerment, nurturing. Several moderators declared their own diagnosis and for some, being able to share personal insights motivated them to establish the group and in turn offered validation. They felt empowered by helping others and learned more about the condition through accessing the "communal brain". Some felt the group aided patients' access to health services and their ability to communicate with health professionals while others worried about them becoming over-dependent. Moderators described needing to nurture their group to ensure it offered a safe space for members. Clear rules of engagement, trust, organisation skills, compassion and kindness were considered essential. Patient moderated online support groups can be successfully developed and facilitated and can be empowering for both the group member and moderator alike

A research note on the benefit of patient and public involvement in research: The experience of prostate cancer patients regarding information in radiotherapy.

This document is the Accepted Manuscript version of the following article: L. Gordon, A. Dickinson, M. Offredy, and J. Smiddy, ‘A research note on the benefit of patient and public involvement in research: The experience of prostate cancer patients regarding information in radiotherapy’, Radiography, Vol. 23(2): 167-170, May 2017, doi: http://dx.doi.org/10.1016/j.radi.2017.02.004. Under embargo. Embargo end date: 27 February 2018. © 2016. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/. © 2017 The College of Radiographers. Published by Elsevier Ltd. All rights reserved.Aim To explore the inclusion of patient and public involvement (PPI) in a qualitative study on the experiences of men with prostate cancer regarding information in radiotherapy. Method The application of PPI to one doctoral research study is explored with respect to two perspectives: firstly, involvement of a patient reference group who informed the research design and materials, and secondly, the involvement of a public involvement in research group (PIRg) in advising the researcher during the design process. Discussion PPI is recognised as an important component of contemporary health research. PPI is becoming a common and essential requirement for high quality research projects and yet literature exploring or reporting the involvement and influence of PPI is sparse. Consideration is given to the national PPI landscape that has shaped public involvement in health research. Conclusion The contribution of PPI to this study appears to have been beneficial to the development and evaluation of the study design, the self-worth of the reference group participants and demonstrates that the value of PPI in health research should not be underestimated.Peer reviewedFinal Accepted Versio