Individuals with concealable stigmatized conditions may experience dilemma about whether or not to talk about their condition.  Even though urinary incontinence (UI) is a common health problem, it is often under-reported and under-treated due to its stigmatized status (Mathews, 2009).  Despite the risk of stigma, disclosure of UI might increase treatment seeking, ease psychological stress, increase self-efficacy, and contribute to positive aging experiences (Heintz et al., 2013). Besides stigma, there might be other reasons why people with incontinence chose to either conceal or disclose their condition.  The purpose of this qualitative study is to describe the perceived risks and benefits of disclosing UI to others.

Individuals who experience incontinence (n=25; 60% male) participated in focus groups about disclosure of incontinence. The mean age of participants was 68 years (SD = 14; range = 27-76 years).  Institutional Review Board approval was obtained through the (institution name blinded for review) and all study participants provided informed consent prior to participation.  A community-based participatory research (CBPR) team, consisting of researchers, health care providers, and people with lived experience of UI developed the research design and focus group questions collaboratively.  The focus groups were jointly facilitated by two members of the CBPR team.  Participants completed a brief demographic questionnaire and then responded orally to questions within the group setting. Questions were open-ended and asked participants to share their experiences with disclosure and expand upon perceived risks and benefits therein.  Focus group transcripts were coded with MAXQDA 12 using inductive thematic analysis (Braun & Clarke, 2006).

Participants reported a range of incontinence types including urge, stress, enuresis, overflow, and mixed/ other.  Many participants (84%) had told at least one person about their incontinence, most often a healthcare provider (80%) or family member (64%).  The perceived benefits of disclosure included: 1) helping others gain understanding or awareness about UI, 2) getting relief from telling the secret, 3) obtaining support and accommodations, 4) strengthening relationships with others, 5) getting treatment for UI, 6) taking control and feeling empowered.  The perceived risks of disclosure were: 1) gossip, 2) prejudice and discrimination (stigma), 3) embarrassment, 4) ignorant reactions from others, 5) unsupportive reactions from others, 6) others using your UI against you.  In terms of prejudice, participants thought that urinary incontinence made them look weak, dependent, or old to others.  Participants described incidences of discrimination including loss of a job, break-up with significant others, and travel-related hassles.

These results indicate that individuals with UI have multiple factors to consider when talking with others about their incontinence.  These seem to depend largely on the reaction or perceived reaction of the person to whom they decide to disclose.  In line with past research, stigma (including prejudice and discrimination) is an important consideration related to disclosure, but there are also other, more benign reactions such as lack of understanding or supportiveness that can influence this decision.  Future studies could examine how confidant reactions impact future disclosure behavior and how perceived risks and benefits of disclosure relate to disclosure behaviors such as help-seeking.

People with UI report both risks and benefits related to disclosure decisions.  Healthcare providers, family members, and public health professionals can better engage people with UI in care when they understand the complex decision-making processes related to disclosure and the subsequent impact of each disclosure on their lives.  Furthermore, people with UI may benefit from guidance on making strategic disclosures that can maximize benefits and reduce risks.

Matthews, D. (2009). Why continence matters: A social work perspective. Aotearoa New Zealand Social Work, 21(4), 34-43.
Heintz, P.A.,  DeMucha, C.M., Deguzman, M.M., Softa R. Stigma and microaggressions experienced by older women with urinary incontinence: a literature review. Urologic Nursing, 33(6):299-305.
Braun, V., Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.