"I don't know whether I will be alive or not" - An interpretative phenomenological analysis of young adult males with Duchenne Muscular Dystrophy making sense of self and life.

BACKGROUND: With ventilatory support, boys with Duchenne Muscular Dystrophy (DMD) now live longer. The emerging adulthood offers unanticipated opportunities for identity exploration. Existing literature has raised issues around transitions and implicit obligations within structural and sociological domains; intrinsic challenges are posed, while concurrently engendering possibilities in an uncertain future. OBJECTIVE: Reveal lived experience and meaning making among men with advanced DMD living outside the western context. METHODS: Secondary data, essentially transcripts of semi-structured interviews with five young men with DMD, age ranging from 23 to 37 years, conducted as part of a larger study were analysed iteratively in depth. Given their underlying vulnerability associated with significant physical dependencies, all respondents were receiving palliative care from the local hospice, and lived with family caregivers at home. RESULTS: Three themes encapsulated the essence of their lifeworld at this juncture. Each shared poignant stories of having survived adverse circumstances in the past, learning to live with themselves in the current state of disabilities and disconnection with peers. Yet, moments of yearning surface, to make new friends and find gainful employment like everyone else. Ambivalence notwithstanding, they navigated societal marginalization through digital media, or found meaning in family bonding and existential dimensions. Faced with uncertainty, most embraced the status quo in silent resignation, to minimise disappointment or as pragmatic responses to enduring systemic and personal barriers. CONCLUSIONS: Study findings expounded challenges men with advanced DMD grappled that ultimately shaped self-identity. Healthcare professionals could support this group of precarious survivors even better through individualised person-centred care.

Sedation guidelines, protocols, and algorithms in PICUs: a systematic review.

OBJECTIVE: To evaluate the impact of sedation guidelines, protocols, and algorithms on clinical outcomes in PICUs. DATA SOURCES: CINAHL, Medline, EMBASE, Web of Science, and the Cochrane Database of Systematic Reviews, STUDY SELECTION: : English-only publications from 1966 to December 2013, which included keywords "sedation," "guideline," "algorithm," "protocol," and "pediatric intensive care." We included all primary studies involving critically ill children on sedation guidelines, protocols, and algorithms and excluded those which focused mainly on diagnostic or procedural purposes. DATA EXTRACTION: Two authors independently screened each article for inclusion. A standardized data extraction sheet was used to extract data from all included studies. DATA SYNTHESIS: Among the 1,283 citations yielded from our search strategy, six observational studies were included in the final review. Due to the heterogeneity of the studies included, clinical outcomes were not combined into a meta-analysis. A descriptive account of the studies was formulated to characterize all included studies. The three outcomes of interest were clinical outcomes, patients' comfort and safety, and sedative use. We found an association between the use of sedation guidelines, protocols, and algorithms and reduced PICU length of stay, frequency of unplanned extubation, prevalence of patients experiencing drug withdrawal, total sedation duration, and doses. Overall, the quality of identified studies is low. CONCLUSIONS: Despite widespread recommendation for the use of sedation guidelines, protocols, and algorithms in critically ill children, our systematic review revealed a paucity of high-quality evidence to guide this practice. More robust studies are urgently needed for this important aspect of PICU care.