Background Decision making experts emphasize that understanding and using probabilistic information is important for making informed decisions about medical treatments involving complex risk-benefit tradeoffs. Yet empirical research demonstrates that individuals may not use probabilities when making decisions. Objectives To explore decision making and the use of probabilities for decision making from the perspective of women who were risk-eligible to enroll in the Study of Tamoxifen and Raloxifene (STAR). Methods We conducted narrative interviews with 20 women who agreed to participate in STAR and 20 women who declined. The project was based on a narrative approach. Analysis included the development of summaries of each narrative, and thematic analysis with developing a coding scheme inductively to code all transcripts to identify emerging themes. Results Interviewees explained and embedded their STAR decisions within experiences encountered throughout their lives. Such lived experiences included but were not limited to breast cancer family history, personal history of breast biopsies, and experiences or assumptions about taking tamoxifen or medicines more generally. Conclusions Women’s explanations of their decisions about participating in a breast cancer chemoprevention trial were more complex than decision strategies that rely solely on a quantitative risk-benefit analysis of probabilities derived from populations In addition to precise risk information, clinicians and risk communicators should recognize the importance and legitimacy of lived experience in individual decision making.
Background Social support is a core determinant of health and plays a key role in the healing process of people with mental health problems and those who have been exposed to torture or other traumatic events. At the same time, social support is particularly challenging to build in such populations, as self-isolation and social withdrawal are common consequences of traumatic incidents. Defining social support is also challenging as there is no globally adequate definition. Our aim was to explore how social support was understood by Médecins Sans Frontières (MSF) beneficiaries, and how they perceived their needs on Lesvos Island, Greece to be met. Methods This was a qualitative study, based on exploratory free-listing interviews that explored how MSF beneficiaries on Lesvos understood and defined social support, followed by a series of in-depth interviews through which participants explained how they perceived their needs to be met. The study was conducted over a period of two weeks in August 2018, with 32 migrants and asylum seekers (22 male, 10 female) enrolled in the mental health services of MSF on Lesvos Island. The majority of interviewees were single men of African origin who had resided in Moria camp between 2 months and 2.5 years. Countries of origin include Syria, Afghanistan, Cameroon, Democratic Republic of Congo (DRC), Iraq, Iran, Nigeria, Senegal and other West African countries. Results Participants defined social support as the practical, informational and emotional support that people receive from organisations, friends and family members. Results revealed a lack of community links, isolation, tensions and conflict, insufficient amenities and limited orientation to services that lead to and amplify isolation, discrimination and tension. Most of the participants received little or no support both formally from organisations and informally from other migrants and asylum seekers in the camp. Conclusions Functional support networks are urgently required to overcome the consequences of restrictive policies which force people into containment and remove their support systems. Actors who are involved in providing social support, including MSF, are strongly encouraged to engage in activities that work towards building and strengthening peer support networks and creating a sense of community.
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