ObjectivesAlthough the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS.DesignSemistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis.SettingSouth East Wales, UK.Participants20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups.ResultsFour main themes around disease progression were identified. ‘Realisation’ describes how patients came to understand they had SPMS while ‘reaction’ describes their response to this realisation. The ‘realities’ of living with SPMS, including dealing with the healthcare system during this period, were described along with ‘future challenges’ envisaged by patients and carers.ConclusionsAwareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them.
Love, Sex, and Choices is a 12-episode soap opera video series created as an intervention to reduce HIV sex risk. The effect on women's HIV risk behavior was evaluated in a randomized controlled trial in 238 high risk, predominately African American young adult women in the urban Northeast. To facilitate on-demand access and privacy, the episodes were streamed to study-provided smartphones. Here, we discuss the development of a mobile platform to deliver the 12-weekly video episodes or weekly HIV risk reduction written messages to smartphones, including; the technical requirements, development, and evaluation. Popularity of the smartphone and use of the Internet for multimedia offer a new channel to address health disparities in traditionally underserved populations. This is the first study to report on streaming a serialized video-based intervention to a smartphone. The approach described here may provide useful insights in assessing advantages and disadvantages of smartphones to implement a video-based intervention.
This study explored reasons women engaged in unprotected sex with male partners they distrusted and perceived to engage in HIV risk behaviors. Seven focus groups were held in public housing and neighborhood centers in the urban Northeast with 43 African American and Latina women. Content analysis was conducted by open and axial coding. Barrett's theory of power as knowing participation in change and sex script theory guided interpretation. Results indicated that Patterns of Unprotected Sex is a usual practice to maintain hope, sensuality, intimacy, strategic gain, and stability with a male partner. In low power sex scripts the salient risks of HIV were buried under an awareness of oneself as having to satisfy a man and accept cheating. High power sex scripts involved women's awareness of themselves as worthy of self care with diverse choices. High power scripts can be integrated into normative sex scripts as exemplars of more powerful ways of being and acting to reduce HIV risk.
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