Development and Cognitive Testing of Occupational Safety and Health Questions for a Youth Survey: Addressing the Research Needs for a Vulnerable Working Population.

BACKGROUND: While more than 2.5 million U.S. high students worked in 2020, data to assess how work affects this group are sparse. To facilitate such research, a set of occupational safety and health questions for inclusion on the Youth Risk Behavior Surveillance System (YRBSS) and other youth-focused surveys was developed. METHODS: Survey questions about occupational experiences of young workers were adapted from other surveys or created de novo. Key audiences were engaged to define priority topic areas and develop draft questions, which were further refined through cognitive interviews with working youth. RESULTS: Twenty-one resulting questions spanned multiple work-related topics: employment status; health outcomes; psychosocial exposures; and safety climate. Cognitive testing revealed that youth (aged 14-19) had difficulty with temporal concepts. Some difficulties reflected the propensity of youth to engage in multiple, online, and informal jobs. During 3 rounds of interviews, questions were adjusted to better reflect youth employment circumstances and language. Four states added at least 1 work-related question to their 2023 Youth Risk Behavior Survey questionnaire, and the full set of questions has been disseminated to federal agencies and partners. CONCLUSION: Including tailored questions about employment in surveys of youth will facilitate occupational health surveillance for this group. Analysis of resulting data can help to close knowledge gaps, provide current prevalence data, inform policy, and allow development of focused prevention and intervention strategies to reduce adverse outcomes among young workers.

Symptom outcomes important to women with anal incontinence: a conceptual framework.

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 semistructured 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; and 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 were 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 white, 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. CONCLUSION: 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. LEVEL OF EVIEDENCE: II.

A narrative literature review of the contribution of volunteers in end-of-life care services.

BACKGROUND: Volunteers are integral to the history of hospices and continue to play a vital role. However, economic, policy and demographic challenges in the twenty-first century raise questions about how best to manage this essential resource. AIM: This narrative review explores the recent literature on end-of-life care volunteering and reflects upon the issues pertinent to current organisational challenges and opportunities. DESIGN: The parameters of the review were set deliberately wide in order to capture some of the nuances of contemporary volunteer practices. Articles reporting on research or evaluation of adult end-of-life care services (excluding prison services) that use volunteers and were published in English between 2000 and 2011 were included. DATA SOURCES: Seven electronic databases, key journals and grey literature databases. RESULTS: Sixty-eight articles were included in the analysis. The articles were drawn from an international literature, while acknowledging that volunteer roles vary considerably by organisation and/or by country and over time. The majority of articles were small in scale and diverse in methodology, but the same topics repeatedly emerged from both the qualitative and quantitative data. The themes identified were individual volunteer factors (motivation, characteristics of volunteers, stress and coping, role boundaries and value) and organisational factors (recruiting for diversity, support and training and volunteers' place in the system). CONCLUSIONS: 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.