Barriers and facilitators of type 1 diabetes self-care in adolescents and young adults.

PURPOSE: This study explores the disease experience of adolescents and young adults with T1DM focusing on the barriers and facilitators that characterise their disease self-care. Self-care requires complex decision making and cooperation between patients, their families, the healthcare team, and the social support system. Personal and social factors affect self-care, and specific challenges impact adolescents and young adults, putting them at a higher risk of poor glycaemic control and more severe complications. DESIGN AND METHODS: The study uses a qualitative description approach. Twenty-two people (15 women; 10-30 years old; 2-24 years from diagnosis) were purposefully recruited through snowballing techniques. Data were collected with semi-structured interviews and analysed inductively with semantic thematic analysis. RESULTS: Four themes and nine subthemes conceptualise the patients' experience as a life-long journey that has its difficult beginning at the time of diagnosis and continues through the resolution of the initial crisis by integrating disease at the identity level and acquiring expertise. Technology and social environment act both as self-care barriers and facilitators. CONCLUSIONS: Findings highlight the importance of designing and improving technology related to diabetes accounting for patients' experiences. Second, it is imperative to work towards a de-stigmatisation of diabetes. Finally, health professionals should work with people with T1DM on the psychological aspects of the disease and identity integration. PRACTICE IMPLICATIONS: Diabetes-related technology should promote usability and acceptability while addressing visibility and device burden issues. Clinicians should pay particular attention during the transition from the paediatric to the adult centres and offer global assessments and treatment.

Mirroring, monitoring, modelling, belonging, and distancing: Psychosocial processes in an online support group of breast cancer patients.

Breast cancer patients are primary users of Internet Health Forums, virtual self-help communities where they find and share information, preoccupations, and support. Previous literature has mainly focused on analysing the contents and the outcomes of breast cancer forums' participation. In light of the Community of Practice theoretical model, our research investigated the psychosocial processes that build and shape patients' experience and participation in the forum. We conducted 16 semi-structured email interviews with breast cancer patients recruited within a well-established online community. Thematic analysis identified five processes-mirroring, monitoring, modelling, belonging, and distancing-that marked three phases of users' experience: initiation, participation, detachment. An interactive dynamic characterised the identified processes: the disease's experience was shaped by and, in turn, it crafted this virtual community. These community processes contributed to participants' empowerment at practical, informative, and emotional levels through the development of a shared repertoire of resources, stories, and ways of dealing with patients' recurring problems.

Regulating liminality: Making sense of the vegetative state and defining the limits of end-of-life action.

Persistently alive but unaware, vegetative state patients are stuck in the transition between life and death - that is, in a liminal hotspot. This condition raises complex ethical and legal dilemmas concerning end-of-life action. Drawing on social representations (SRs) and the liminality framework, our research investigated how the vegetative state was constructed within the Italian parliamentary debates discussing end-of-life bills (2009-2017). We aimed to understand (1) how political groups represented the vegetative state, (2) how they legitimised different end-of-life bills and (3) came to terms with the issue of liminal hotspots. By dialogically analysing three debates (No. of interventions = 98), we identified six themes and discursive aims allowing parliamentarians to differently represent the vegetative state and support different courses of action. In turn, we identified new features of the psycho-social processes generating SRs: the dialogical tensions between anchoring and de-anchoring. Results corroborated the idea that de-paradoxifying liminality relies on group sense-making and, thus, different political leanings differently addressed the liminality of the vegetative state. We also reveal a novel feature of dealing with liminal hotspots informing the psycho-social literature that applies when a decision needs to be taken, such as in the case of crafting a law: moving from the paradox.

The interplay between ovarian cancer and social relationships: an analysis of patients' metaphors.

OBJECTIVE: Research showed that ovarian cancer poses unique challenges to patients' care experiences and that patients' social networks could affect their care path significantly. The present study aimed to analyse the metaphors that patients used to signify the impact of the illness on their social relationships and the role of relationships in dealing with cancer. DESIGN: Following a qualitative description approach we conducted 38 semi-structured interviews with Australian (14) and Italian (24) women diagnosed at different stages of ovarian cancer. RESULTS: The analysis identified four themes bringing together the meanings expressed by participants' metaphors: Lack of comprehension and communication; Isolation, marginalisation, and self-isolation; Discrepancy between the private and public self; and Social relationships as empowerment resources. CONCLUSION: The polysemic nature of patients' metaphors captures both the empowering and especially disempowering role of social relationships in dealing with ovarian cancer. Results also show that metaphors are used to make sense of the impact of ovarian cancer on social relationships and to express different strategies for managing patients' networks.

Hacking women's health: A new methodology.

The paper describes an innovative methodological approach to Public Engagement already tested by the Authors in the healthcare context. We propose to apply our methodology to social innovation projects, focusing on gender perspective when promoting enhancements in health-community. Methodology mixes Psychosocial Participatory Research, Service-Design and "Human-Centered" approach, promoting an interdisciplinary, technological, and sustainable process. The final aim is to find viable solutions to real problems through the engagement of a community of experts and citizens in a three-step process. Awareness-raising actions: to increase people's knowledge-group understanding of the subject and to stimulate reflection. Activities: Gender-Cafés, Ethnographic-Observations and Narrative-Interviews. Activation actions: group interventions in which initial stimuli are collected and processed into proposals for services and tools aimed at targeted groups. Activities: Barcamps, Generative Labs. Participation actions: multidisciplinary teams realize prototypes and elaborate concrete solutions (tools, services) addressing crucial gender issues. Activities: Hackathon, Service-Design-Labs.