The tensions involved in negotiating the boundary spaces that volunteers inhabit, informality and regulation, diversity issues and the cultural specificity of community models, are suggested as topics that merit further research and could contribute to the continuing development of the volunteer workforce.

OBJECTIVE To develop a framework that describes the most important symptom outcomes for anal incontinence treatment from the patient perspective. METHODS A conceptual framework was developed by the Pelvic Floor Disorders Network based on four semi-structured focus groups and confirmed in two sets of 10 cognitive interviews including women with anal incontinence. We explored: 1) Patient preferred terminology for describing anal incontinence symptoms; 2) Patient definitions of treatment “success”; 3) Importance of symptoms and outcomes in the framework; 4) Conceptual gaps (defined as outcomes not previously identified as important). Sessions were conducted according to grounded theory; transcribed, coded, and qualitatively and quantitatively analyzed to identify relevant themes. Content and face validity of the framework was further assessed using cognitive interviews. RESULTS Thirty-four women participated in focus groups and 20 in cognitive interviews. Overall, 29 (54%) were aged 60 years or older, 42 (78%) were Caucasian and 10 (19%) had a high school degree or less. Two overarching outcome themes were identified: “Primary Bowel Leakage Symptoms” and “Ancillary Bowel Symptoms”. Subdomains important in Primary Bowel Leakage Symptoms included leakage characteristics (symptom frequency, amount of leakage, symptom bother) and conditions when bowel leakage occurs (predictability, awareness, urgency). Subdomains important under Ancillary Bowel Symptoms included emptying disorders (constipation, obstructed defecation, and wiping issues) and discomfort (pain, burning). New outcomes identified included predictability, awareness, wiping issues, and discomfort. CONCLUSIONS Women with anal incontinence desire a wide range of symptom outcomes after treatment. These are captured in our conceptual framework, which can aid clinicians and researchers in assessing anal incontinence..