Prostate Cancer Support Groups Research Articles

Financial toxicity: a potential side effect of prostate cancer treatment among Australian men.

The purpose of this study was to understand the extent, nature and variability of the current economic burden of prostate cancer among Australian men. An online cross‐sectional survey was developed that combined pre‐existing economic measures and new questions. With few exceptions, the online survey was viable and acceptable to participants. The main outcomes were self‐reported out‐of‐pocket costs of prostate cancer diagnosis and treatment, changes in employment status and household finances. Men were recruited from prostate cancer support groups throughout Australia. Descriptive statistical analyses were undertaken. A total of 289 men responded to the survey during April and June 2013. Our study found that men recently diagnosed (within 16 months of the survey) (n = 65) reported spending a median AU$8000 (interquartile range AU$14 000) for their cancer treatment while 75% of men spent up to AU$17 000 (2012). Twenty per cent of all men found the cost of treating their prostate cancer caused them ‘a great deal’ of distress. The findings suggest a large variability in medical costs for prostate cancer treatment with 5% of men spending $250 or less in out‐of‐pocket expenses and some men facing very high costs. On average, respondents in paid employment at diagnosis stated that they had retired 4–5 years earlier than planned.

Heterosexual couples and prostate cancer support groups: a gender relations analysis

Men diagnosed with prostate cancer (PCa) can receive supportive care from an array of sources including female partners and prostate cancer support groups (PCSGs). However, little is known about how heterosexual gender relations and supportive care play out among couples who attend PCSGs. Distilling such gender relation patterns is a key to understanding and advancing supportive care for men who experience PCa and their families. This study describes connections between heterosexual gender relations and PCa supportive care among couples who attend PCSGs. In-depth, individual interviews with 30 participants (15 men treated for PCa and their female partners) were analyzed using interpretive descriptive methods. Couples were asked about their relationships, supportive care needs, and attendance at PCSGs. A heterosexual gender relations framework was used to theorize the findings. Findings showed that traditional heterosexual gender relations guided most couples' PCa-related support both in and out of PCSGs. Three themes were inductively derived: "Not pushing too hard"-balancing women's support with men's autonomy, "Confreres"-men supporting men at PCSGs, and "Women are better at reassuring"-support from and for women. Couples both aligned to and resisted traditional gender roles to accommodate, explain, and rationalize how, as a couple, they approached PCa supportive care needs.

Prostate Cancer Support Groups in a Local Faith Community

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The struggle towards 'the New Normal': a qualitative insight into psychosexual adjustment to prostate cancer.

BackgroundDespite the growing body of literature which highlights the potential for significant and enduring side-effects of prostate cancer treatment, there is limited research exploring the experience of living with the treatment-induced side-effects such as sexual dysfunction, and their repercussions for men and their partners. The aim of this qualitative study was to explore factors influencing psychosexual adjustment, self-perception, and unmet information and support needs of prostate cancer patients and their partners.MethodsTwenty-one men, recruited via a prostate cancer support group newsletter, participated in face-to-face semi-structured interviews, which were subjected to thematic analysis.ResultsThe qualitative analysis revealed three inter-connected main themes which contributed to men’s psychosexual adjustment: i) Psychosexual impact, ii) Communication and support, and iii) Integration process. Men reported distressing sexual and urinary difficulties, tainted self-perception and altered intimate relationships. Receiving adequate information and support, and having good communication with their doctors and partners facilitated better adjustment to prostate cancer treatment. Coming to terms with the significant impact of treatment had involved making lifestyle changes, coping with emotional struggles and striving to accept and integrate their post-treatment “new normal” self and sexual life.ConclusionsThe importance of adequate communication with health professionals and partners, especially regarding treatment effects on sexual function and rehabilitation options, was highlighted as a key factor facilitating the adjustment process. Prostate cancer patients would benefit from improved access to timely and tailored information and decision-making resources, ongoing multidisciplinary care, and support groups, as well as appropriate referrals for sexual and psychological counselling.

Prostate cancer support groups: Canada-based specialists' perspectives.

To understand prostate cancer (PCa) specialists’ views about prostate cancer support groups (PCSGs), a volunteer sample of Canada-based PCa specialists (n = 150), including urologists (n = 100), radiation oncologists (n = 40), and medical oncologists (n = 10) were surveyed. The 56-item questionnaire used in this study included six sets of attitudinal items to measure prostate cancer specialists’ beliefs about positive and negative influences of PCSGs, reasons for attending PCSGs, the attributes of effective PCSGs, and the value of face-to-face and web-based PCSGs. In addition, an open-ended question was included to invite additional input from participants. Results showed that PCSGs were positively valued, particularly for information sharing, education and psychosocial support. Inclusivity, privacy, and accessibility were identified as potential barriers, and recommendations were made for better marketing PCSGs to increase engagement. Findings suggest prostate cancer specialists highly valued the role and potential benefits of face-to-face PCSGs. Information provision and an educational role were perceived as key benefits. Some concerns were expressed about the ability of web-based PCSGs to effectively engage and educate men who experience prostate cancer.

Are penile prostheses a viable option to recommend for gay men?

When talking to a gay men's prostate cancer support group on erectile dysfunction a question was asked of the author if he had evidence that a penile prosthesis would be rigid enough for anal sex. As a heterosexual male with no knowledge of a homosexual man with a prosthesis, the author could not answer the question. The local representative could not give the author a definitive answer either and there was no specific literature on this subject. However, testing of the rigidity of penile prosthesis demonstrated buckling forces of 800 g. On the basis of reported values that anal penetration requires 33% more rigidity than vaginal sex, the minimum rigidity required for vaginal sex is 500 g. Based on this figure a minimum rigidity of 634 mg is required for anal sex. A rigidity of 800 mg should therefore facilitate anal sex. This article considers current literature on the difference between heterosexual and homosexual prosthesis needs to aid health practitioners in decision-making.

Repackaging Prostate Cancer Support Group Research Findings

In the context of psychosocial oncology research, disseminating study findings to a range of knowledge "end-users" can advance the well-being of diverse patient subgroups and their families. This article details how findings drawn from a study of prostate cancer support groups were repackaged in a knowledge translation website--www.prostatecancerhelpyourself.ubc.ca--using Web 2.0 features. Detailed are five lessons learned from developing the website: the importance of pitching a winning but feasible idea, keeping a focus on interactivity and minimizing text, negotiating with the supplier, building in formal pretests or a pilot test with end-users, and completing formative evaluations based on data collected through Google™ and YouTube™ Analytics. The details are shared to guide the e-knowledge translation efforts of other psychosocial oncology researchers and clinicians.

The value of prostate cancer support groups: a pilot study of primary physicians’ perspectives

BackgroundIn Canada, prostate cancer (PCa) is the most common male cancer, and prostate cancer support groups (PCSGs) have prevailed for more than 20 years providing support to men with PCa and their families. While the format, focus and benefits of attending PCSGs have been reported little is known about primary physicians’ (PPs) perceptions of these groups. This article describes Canadian primary physicians’ views about face-to-face and web-based PCSGs.MethodsCanadian based primary physicians (n = 140) attending a 2012 Continuing Medical Education Conference participated in a pilot survey questionnaire study. The 56-item questionnaire used in this study included six sets of attitudinal items to measure primary physicians’ beliefs about positive and negative influences of PCSGs, reasons for attending PCSGs, the attributes of effective PCSGs, and the value of face-to-face and web-based PCSGs.ResultsResults showed that PCSGs were positively valued, particularly for information sharing, education and psychosocial support. Poor inclusivity, privacy, and accessibility were identified as potential barriers, and recommendations were made for better marketing and web-based PCSGs to increase engagement with potential attendees.ConclusionsFindings suggest PPs highly valued the role and potential benefits of PCSGs. Information provision and an educational role were perceived as key benefits amid the need to improve local and provincial marketing of PCSGs. The potential for web-based PCSGs to help in the support of PCa patients was also recognized.

A home-based resistance training program for survivors of prostate cancer: A pilot randomized controlled trial

Introduction: Men with prostate cancer experience a range of disease and treatment-related physical effects. Trials of resistance training (RT) with prostate cancer survivors have demonstrated the potential to improve many of the most common and debilitating symptoms. However, these trials have mainly comprised supervised programs often conducted at hospitals, limiting access for rural participants and capacity for sustainability. Home-based RT programs have the potential to overcome these limitations.Method: Get PHITT (Prostate Health Improved Through Training) was a 12 week, home-based RT program for men with prostate cancer. Men attended one face-to-face session to receive instruction from an exercise specialist and a home-based RT program (3 sessions/week), a behaviour-change support manual, and an elastic resistance device (Gymstick). The support manual incorporated evidence- and theory-informed behaviour change strategies aligned with social cognitive theory. The theoretical constructs operationalised within the support manual included self-efficacy, outcome expectations, social support, and intentions. We aimed to establish feasibility, acceptability and preliminary efficacy via a pilot wait-list RCT. Men (n=39) were recruited via local media and an existing prostate cancer support group. Participants provided patient-reported (quality of life, fatigue, depression/anxiety, acceptability [5 point likert scale SD-SA]) and objectively assessed (muscular strength, body composition, waist circumference, BMI, agility) data. We assessed recruitment and retention rate, and analysed RT log books to assess adherence.Results: The recruitment target was met within 3 days. The program achieved good fidelity (72%) and retention (90%). Intervention participants (n=18) reported that the program was enjoyable (χ¯=4), informative (χ¯=4.6), useful (χ¯=4.5), relevant (χ¯=4.2), that using the Gymstick was enjoyable (χ¯=4.7), and that they would recommend the program to other prostate cancer survivors (100%). Preliminary analyses identified improvements in global quality of life and muscular strength, and decreased fatigue amongst intervention participants that were not observed amongst control participants. Findings of all outcomes will be presented.Discussion: The Get PHITT program has demonstrated acceptability, feasibility and preliminary efficacy. The next step is evaluation in a fully powered trial. Introduction: Men with prostate cancer experience a range of disease and treatment-related physical effects. Trials of resistance training (RT) with prostate cancer survivors have demonstrated the potential to improve many of the most common and debilitating symptoms. However, these trials have mainly comprised supervised programs often conducted at hospitals, limiting access for rural participants and capacity for sustainability. Home-based RT programs have the potential to overcome these limitations. Method: Get PHITT (Prostate Health Improved Through Training) was a 12 week, home-based RT program for men with prostate cancer. Men attended one face-to-face session to receive instruction from an exercise specialist and a home-based RT program (3 sessions/week), a behaviour-change support manual, and an elastic resistance device (Gymstick). The support manual incorporated evidence- and theory-informed behaviour change strategies aligned with social cognitive theory. The theoretical constructs operationalised within the support manual included self-efficacy, outcome expectations, social support, and intentions. We aimed to establish feasibility, acceptability and preliminary efficacy via a pilot wait-list RCT. Men (n=39) were recruited via local media and an existing prostate cancer support group. Participants provided patient-reported (quality of life, fatigue, depression/anxiety, acceptability [5 point likert scale SD-SA]) and objectively assessed (muscular strength, body composition, waist circumference, BMI, agility) data. We assessed recruitment and retention rate, and analysed RT log books to assess adherence. Results: The recruitment target was met within 3 days. The program achieved good fidelity (72%) and retention (90%). Intervention participants (n=18) reported that the program was enjoyable (χ¯=4), informative (χ¯=4.6), useful (χ¯=4.5), relevant (χ¯=4.2), that using the Gymstick was enjoyable (χ¯=4.7), and that they would recommend the program to other prostate cancer survivors (100%). Preliminary analyses identified improvements in global quality of life and muscular strength, and decreased fatigue amongst intervention participants that were not observed amongst control participants. Findings of all outcomes will be presented. Discussion: The Get PHITT program has demonstrated acceptability, feasibility and preliminary efficacy. The next step is evaluation in a fully powered trial.

Cancer as a Problem to Be Solved

Increasingly, cancer-related Web sites have been developed to provide information for patients. More needs to be done to understand the experience of men with cancer using the Internet. Heideggerian hermeneutics is the interpretive approach used to guide this study. Fifteen men with cancer who used the Internet were recruited through a prostate cancer support group and snowball sampling. Participants were individually interviewed and asked to tell stories of Internet use and practices. Transcribed interviews provided data for interpretive analysis. The overall constitutive pattern describing the men's experience is "cancer diagnosis as a problem to be solved." Five related themes included (1) seeking disease and treatments information from the Internet for decision making, to become comfortable with treatment plan; (2) organizing information to facilitate provider encounters and to monitor for reoccurrence; (3) evaluating Web information by credibility and usability with trust in the physician influencing the end decision point; (4) symptom management by knowing possibilities by hearing patient stories; and (5) navigating through the healthcare system politics and power. Men with cancer are incorporating Internet use into their cancer journey. They perceive changing provider-patient relationships when they participate in treatment decisions and monitor for reoccurrence.

PSA testing: Molecular technologies and men's experience of prostate cancer survivorship

Although the value of the PSA (prostate-specific antigen) test as a cancer-screening instrument remains hotly contested, over the past two decades its usage has become commonplace. While most men diagnosed with prostate cancer will die with rather than of the disease, widespread PSA screening has led to an attendant increase in cancer diagnoses and the usage of aggressive treatments to ‘combat’ it. Despite the central (if controversial) role that PSA now plays in the diagnosis of prostate cancer and monitoring for recurrence, few studies have set out to explore its role in men's experiences of the disease. Drawing on ethnographic fieldwork at a prostate cancer support group in western Canada, we seek to delineate the meanings the PSA test holds for prostate cancer survivors. For many men in the study, their PSA levels were seen to provide an objective indicator of the presence or absence of cancer, with important implications for their subjective experience of cancer diagnosis and survivorship.

Prostate cancer support groups, health literacy and consumerism: Are community-based volunteers re-defining older men’s health?

In this article we describe the connections between prostate cancer support groups (PCSGs) and men's health literacy and consumer orientation to health care services. The study findings are drawn from participant observations conducted at 16 PCSGs in British Columbia, Canada and 54 individual interviews that focused on men's experiences of attending group meetings. Men's communication and interactions at PCSGs provide important insights for how men talk about and conceptualize health and illness. For example, biomedical language often predominated at group meetings, and men used numbers and measures to engage with risk discourses in linking prostate cancer markers to various treatment options and morbidity and mortality rates. Many groups afforded opportunities for men to interact with health care providers as a means to better understand the language and logic of prostate cancer management. The health literacy skills fostered at PCSGs along with specific group-informed strategies could be mobilized in the men's subsequent clinical consultations. Consumer discourses and strategies to contest power relations with health care professionals underpinned many men's search for prostate cancer information and their commitment to assisting other men. Key were patients' rights, and perhaps responsibility, to compare diverse health products and services in making decisions across the entire trajectory of their prostate cancer. Overall, the study findings reveal PCSGs as having the capacity to contest as well as align with medical expertise and services facilitating men's transition from patient to informed health care consumers. The processes through which this occurs may direct the design of older men's health promotion programs.

Prostate cancer support groups, health literacy and consumerism: Are community-based volunteers re-defining older men's health?

Prostate cancer support groups, health literacy and consumerism: Are community-based volunteers re-defining older men's health?

Theorizing About Social Support and Health Communication in a Prostate Cancer Support Group

This article inquires into whether and how uncertainty reduction theory and problematic integration theory, two theories relevant to social support as enacted within a chapter of the Man-to-Man prostate cancer support group, inform us of how such groups can assist group members most effectively. Interview data from members of a prostate cancer support group shed light on theoretical assumptions about uncertainty. Although the group applies elements of both theories, prostate cancer survivors likely would benefit from a more comprehensive and flexible treatment of social support theory.

Men's experiences of radical prostatectomy as treatment for prostate cancer

Purpose of the research The aim of this study was to provide a retrospective view of men's experiences of the prostate cancer treatment journey from initial diagnosis through to completion of their surgery and beyond. Method and sample A qualitative, descriptive design was employed. A volunteer sample ( n = 8) of men 15 years or less post radical prostatectomy was recruited through a prostate cancer support group M.A.C. (Men Against Cancer). Interviews were taped and transcribed verbatim. Data were analysed using qualitative thematic content analysis. Key results Men identified a number of themes related to their prostate cancer diagnosis, subsequent surgery and life post surgery. These included the process of diagnosis, support, normalisation, the importance of information, defining moments and primary concerns. Conclusions Qualitative, descriptive research provides a platform for men to share their experiences of the prostate cancer journey. Healthcare professionals should be alert to the factors which patients consider important during their treatment trajectory. These qualitative interviews provide much needed knowledge in relation to men's experience of the prostate cancer treatment trajectory. In a healthcare system which increasingly values the ‘patients view’ this type of information is vital in order to tailor healthcare services to meet the unique needs of each patient.

Connecting humor, health, and masculinities at prostate cancer support groups

Many commentaries about men's health practices and masculinities indicate that men do not typically engage with self-health or acknowledge illness, let alone openly discuss their health concerns with other men. Prostate cancer support groups (PCSGs) appear to run contrary to such ideals, yet the factors that influence men's attendance and engagement at group meetings are poorly understood. As part of a larger PCSG study, we noticed that humor was central to many group interactions and this prompted us to examine the connections between humor, health, and masculinities. A qualitative ethnographic design was used to direct fieldwork and conduct participant observations at the meetings of 16 PCSGs in British Columbia, Canada. Individual semi-structured interviews were completed with 54 men who attended PCSGs to better understand their perceptions about the use of humor at group meetings. Four themes, disarming stoicism, marking the boundaries, rekindling and reformulating men's sexuality, and when humor goes south were drawn from the analyses. Overall, humor was used to promote inclusiveness, mark the boundaries for providing and receiving mutual help, and develop masculine group norms around men's sexuality. Although there were many benefits to humor there were also some instances when well-intended banter caused discomfort for attendees. The importance of group leadership was central to preserving the benefits of humor, and the specificities of how humor is used at PCSGs may provide direction for clinical practice and the design of future community-based men's health promotion programs.

Health Promotion and Illness Demotion at Prostate Cancer Support Groups

Although health promotion programs can positively influence health practices, men typically react to symptoms, rather than maintain their health, and are more likely to deny than discuss illness-related issues. Prostate cancer support groups (PCSGs) provide an intriguing exception to these practices, in that men routinely discuss ordinarily private illness experiences and engage with self-health. This article draws on individual interview data from 52 men, and participant observations conducted at the meetings of 15 groups in British Columbia, Canada to provide insights to how groups simultaneously facilitate health promotion and illness demotion. The study findings reveal how an environment conducive to men's talk was established to normalize prostate cancer and promote the individual and collective health of group members. From a gendered perspective, men both disrupted and embodied dominant ideals of masculinity in how they engaged with their health at PCSGs.

Prostate Cancer and the Social Construction of Masculine Sexual Identity

Perhaps no other disease illustrates the social construction of masculine identity more vividly than prostate cancer, an illness whose common symptoms and treatment effects (for example, erectile dysfunction and incontinence) leave men with a diminished sense of agency over their bodies. This loss of agency reveals the ways in which societal norms regarding appropriate masculine sexual behavior and identity are cultural creations, not biological absolutes. Recalling prior studies of prostate cancer narratives and studies of prostate cancer support groups, this article inquires not only into dominant constructions of sexuality, but also into the possibilities of redefining sexuality and masculinity among prostate cancer survivors.

Women and prostate cancer support groups: The gender connect?

There are more than 100 prostate cancer support groups (PCSGs) in Canada, most of which meet on a monthly basis—yet little attention has been paid to the role of women at these groups. As part of an ongoing ethnographic study of PCSGs, we examined women's motivations for attending the groups, their ways of functioning in PCSGs and the benefits they accrued. Participant observations conducted at 13 British Columbian-based PCSGs and individual interview data from 20 women who regularly attended PCSG meetings were analyzed. Although the groups did not overtly limit women's attendance, the women's decisions to attend and their participation at group meetings were subject to much self-reflection, uncertainty and tension. Motivations to access a PCSG included a desire to support their partners, develop understandings about the illness and disease, and to manage their own experience of prostate cancer. Our analyses revealed that women assume three roles in PCSGs: social facilitator, background supporter and cancer co-survivor. The women reported many interrelated benefits as a result of attending, including information, hope and reassurance, and connecting with other women in similar circumstances. The results from this study reveal how traditional feminine ideals, such as nurturing and caring for the men in their lives, facilitating social connections and the desire to share emotional experiences guided the behaviors. Based on the study findings, we suggest that efforts to support women's involvement in PCSGs are critical to enhancing the effectiveness of the groups for both men and women.

Prostate Cancer among Canadian Men: A Transcultural Representation

Health services should consider the masculine representation of disease that underlies men’s health behaviors. This study presents a transcultural view of Prostate Cancer (PC) among Canadian men of European descent. Nine men who were enrolled in a PC support group in Southeastern Ontario comprised the sample. Data were collected through interviews, genograms and ecomaps. The contrasting-ideas method guided analysis and interpretation of the findings. Healthcare providers must assist men to understand that an immediate investment of time is imperative to adequately decode and understand medical information, consider available therapies, and reflect on the potential outcome of their decisions.