This study described the nature of PCa survivors’ disclosure about their diagnosis and treatment to members of their SS network. We assessed men’s motivations for disclosing their diagnosis and treatment, and men’s perceptions of others’ reactions and their own reactions following their disclosure. The majority of men reported that they told members of their social network about their disease and treatment because they felt it was “the right thing to do” and that their loved ones “deserved to know.” These responses reflected the way that men perceived their relationships. Of the men who stated they were influenced to tell others because of a benefit to themselves, many of the responses indicated that men were seeking emotional support. This was notable, as men appeared to welcome the receipt of emotional support and saw it as something that benefited them. This was further emphasized when men indicated how they felt after the disclosure and the predominant response revealed the experience of ‘positive emotions’ as a result. For example, men indicated that they had a sense of relief and a reduction of worries after they disclosed their experiences. In sum, the predominant responses included the experience of positive emotions and the receipt of SS, particularly emotional support.
Another aspect of men’s perceived benefit to themselves concerned the subcategory, “not wanting to hide anything.” This theme conveyed a desire to be open and to want to communicate about their cancer. Communication may be especially important for the PCa survivor facing problems such as sexual and urinary dysfunction [42
], as these changes may significantly impact HRQL. Survivor disclosure may reduce distress, as it has proven beneficial for overall health and psychological well-being [21
]. In this way, SS may improve HRQL for PCa survivors by facilitating coping with some of the immediate and long-term effects associated with treatment.
The narrative responses concerning treatment side effects, as well as the quantitative responses, indicated that side effects continued to be a significant problem 2–3 years following treatment. As is common following radical prostatectomy, sexual and urinary side effects were reported most often. When asked, “What information do you continue to share now,” the most common response concerned side effects, further highlighting the lasting impact of side effects long after the completion of treatment. These results suggest that interventions focused on facilitating men’s adjustment to long-term side effects such as sexual and urinary dysfunction may be useful and well-received by PCa survivors. Such interventions may help survivors accept the commonly experienced side effects as an expected consequence of treatment.
There were several limitations that should be considered in the interpretation of the results. The length of time since treatment (2–3 years) may have limited men’s ability to accurately recall the information they disclosed and others’ reaction to the disclosure. Further, men’s current functioning may have influenced the valence of their recollection. In addition, prior participation in the symptom monitoring intervention suggests that these participants may have been more open to discussing their symptoms, as well as sensitized to treatment side effects. Finally, although the manual recording of verbatim responses may not be viewed as an ideal technique for use during qualitative interviews, we did not find that the brief pauses required for writing disrupted the flow of the interview. The participants were generally motivated to tell their stories, and based on the richness of their responses, did not appear to mind that the interviewer paused to record their responses. Further, as the interviews were conducted by phone, the recording of the responses was less intrusive than if the interviews had been conducted in person. Further, there may have been a slight advantage for some participants who would have been uncomfortable knowing that they were being tape recorded.
This study contains several strengths, primary of which is the rich narrative describing men’s positive perceptions of their and others’ reactions to the disclosure about their diagnosis and treatment. Specifically, this study provided men’s descriptions of the importance of SS as they were coping with the long-term side effects of treatment. Assessing men’s long-term view provided an understanding of the lasting effects from that period of great uncertainty. This research is innovative in its focus on men’s disclosure of their diagnosis and treatment and the relationship between this disclosure, SS, and positive emotions. Encouraging newly diagnosed PCa patients to share this information may serve as an invitation to elicit SS from those close to them. Also, there is little available data that explores why prostate cancer survivors do or don’t disclose their diagnosis and treatment, or of men’s perceptions of this disclosure and how it relates to their own adjustment to the illness and treatment.
The results indicated that men received SS at the time of their diagnosis and treatment, and that they believe that it had a positive impact on their quality of life. The data also revealed that survivors felt that their SS network should be informed about their condition, and they continued to disclose information about side effects long after the completion of treatment. Receipt of emotional support was endorsed by many men, suggesting that while men may not necessarily ask for support, they appear to benefit from it well into survivorship when they have returned to their lives but are still being negatively impacted. Physicians may also encourage men to disclose their experiences about diagnosis and treatment as a way to potentially improve men’s HRQL. Overall, the results of this study suggest that additional research is needed to further examine the relationship between SS and HRQL in PCa survivors in an effort to improve men’s ability to cope with the long-term side effects that many men experience.
4.3. Practice implications
Given the reported benefits of emotional support and the association with positive adjustment, healthcare providers may be able to enhance survivors' well-being by asking men whether or not they have a support network. For those who do, providers can encourage men to talk to people about their experiences as a way to cope with the experience. For men who do not, providers can encourage men to seek out a support network. Prostate cancer-specific support groups (e.g., Us TOO (http://ustoo.com/
) have been beneficial for some men. If providers encourage survivors to talk about their diagnosis, treatment, and side effects with others, men may be more likely to exchange this type of information, which may result in better quality of life for many survivors of PCa.