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

Abstract

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.

A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN)

“…Studies utilising internet message board postings had relatively large sample sizes (range n = 146-1053), with postings across studies being made by a total of 1053 men and 356 women with LTCs. Studies employing participant observation varied in sample size, between three 135 and 333, [124][125][126] while in some it was not possible to determine the sample size of men with LTCs. 107,112,124,208,215 Samples for studies involving interviews and focus groups ranged between three 135 and 99.…”

“…As shown in Table 36, the majority of studies (n = 35) [99][100][101][102][103][107][108][109][110][111][112][113][115][116][117]119,[122][123][124][127][128][129][130]134,135,207,[209][210][211][213][214][215][216][217][218] gathered participants' views using interviews or focus groups. Data were collected solely through interviews in 22 studies, 99,100,102,108,109,111,113,[115][116][117]119,121,123,127,…”

“…Three studies were descriptive only, and all three of these were reported alongside quantitative research. [99][100][101] Four studies reported taking a phenomenological approach, 113,114,117,134,135 two used ethnography, [124][125][126]215 two used discourse analysis 208,218 and two used grounded theory, 115,118,119 including one that used participatory research. 118,119 Sample size…”

“…Data were collected solely through interviews in 22 studies, 99,100,102,108,109,111,113,[115][116][117]119,121,123,127,134,210,211,213,214,[216][217][218] solely through focus groups in three studies 101,130,209 and through a combination of interviews and focus groups in three studies. 110,[120][121][122]129 A further five studies used a combination of interviews and participant observation 107,112,[124][125][126]135,215 and one study combined focus groups and participant observation. 207 Only one study used participant observation without another form of data collection.…”

“…[99][100][101][102][103][134][135][136][207][208][209][210][211][212][213][214][215][216][217][218] Three studies were reported across multiple papers that were individually eligible for inclusion. [118][119][120][121][124][125][126] An additional two papers that did not meet the eligibility criteria as they had female-only samples are included in the synthesis because they presented data about women that formed the basis of gender comparisons made by the authors of included studies reporting findings from male participants. 114,122 The details of all included studies are presented in Table 36 and provide the context for the interpretations of each study.…”