Graduate students occupy social positions within institutions of higher education that are rife with role strain and, relative to broader power relations within these institutions, are marginalized. In this study, we inquire how the social positions and concomitant roles of graduate students shape their mental health experiences, investigating potential institutional sources of stress. Our findings suggest that master’s and doctoral students have unique mental health concerns related to their roles and social positions as graduate students. Major institutional sources of stress include role strain, mentor relationships, isolation, and funding.
BackgroundHealth care–associated infections (HAIs) are a socio-technical problem. We evaluated the impact of a social change intervention on health care personnel (HCP), called “positive deviance” (PD), on patient safety culture related to infection prevention among HCP.MethodsThis observational study was done in 6 medical wards at an 800-bed public academic hospital in the United States. Three of these wards were randomly assigned to receive PD intervention on HCP. After a retrospective 6-month baseline period, PD was implemented over 9 months, followed by 9 months of follow-up. Patient safety culture and social networks among HCP were surveyed at 6, 15, and 24 months. Rates of HAI were measured among patients.ResultsThe measured patient safety culture was steady over time at 69% aggregate percent positive responses in wards with PD vs decline from 79% to 75% in wards without PD (F statistic 10.55; P = .005). Social network maps suggested that nurses, charge nurses, medical assistants, ward managers, and ward clerks play a key role in preventing infections. Fitted time series of monthly HAI rates showed a decrease from 4.8 to 2.8 per 1000 patient-days (95% confidence interval [CI], 2.1 to 3.5) in wards without PD, and 5.0 to 2.1 per 1000 patient-days (95% CI, –0.4 to 4.5) in wards with PD.ConclusionsA positive deviance approach appeared to have a significant impact on patient safety culture among HCP who received the intervention. Social network analysis identified HCP who are likely to help disseminate infection prevention information. Systemwide interventions independent of PD resulted in HAI reduction in both intervention and control wards.
BackgroundLaunched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify “patients like them,” and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific “vertical” communities consisting only of people with the same disease to a “generalized platform,” in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools.ObjectiveWe aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation.MethodsA cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM). A benefit index was developed for comparability across conditions.ResultsThe invitation was viewed by 26,048 members of whom 11,915 did not respond, 5091 opted out, 1591 provided partial data, and 17 were screened out. Complete responses were received from 7434 participants. Users perceived greatest benefit in understanding how their condition may affect them (4530/6770, 66.91% participants, excluding “does not apply” answers), understanding what might help them live better with their condition (4247/6750, 62.92%), which treatments were available (4143/6898, 60.06%), understanding treatment side effects (4182/6902, 60.59%), and important factors in making treatment decisions (3919/6813, 57.52%). The benefit index was 29% higher for the “most activated” patients (PAM level 4 vs PAM level 1; relative risk [RR]=1.29, P<.001), 21% higher for conditions with some community customization versus none (RR=1.21, P<.001), and 11% higher in those using the site most often versus least (RR=1.11, P<.001).ConclusionsMembers of the generalized platform reported a range of benefits related to improved knowledge and understanding of their condition and treatment management. Condition-specific customization may improve their experience still further. Future studies will explore longitudinal changes to patient activation.
BackgroundIn the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes.ObjectiveThe goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients’ journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers.MethodsWe recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs.ResultsAmong 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS.ConclusionsThis study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence.
Survey results identified constitutional symptoms of CLL included in existing PRO instruments and the literature. Although the findings suggest that qualitative data obtained through social media applications can be potentially useful in supporting concept identification for newly developed PRO instruments, they also indicate that online approaches alone may not be sufficient to achieve efficient and exhaustive concept elicitation. Further research is needed to identify whether the results can support content validity in the same way as established qualitative research methods.
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