“Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences

Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, “body as a machine,” was constructed from the narratives. Fatigue represented the most restrictive and disruptive aspect of growing up with SCD. Its meaning and significance laid in what it symbolized. Fatigue represented a socially undesirable feature that was stigmatizing, due to the expectations of high physicality in adolescence. Fatigue was therefore a major threat to “normalcy.” The social significance of the physical body and its capacities shaped the adolescents’ fatigue experiences. Managing fatigue to construct/maintain socially acceptable identities dominated the adolescents’ lives. Consequently, there is a need for a recognition of the significance of fatigue to adequately support young people growing up with SCD

The development and evaluation of alternative communication strategies to facilitate interactions with Somali refugees in primary care: a preliminary study

The work reported in this paper forms part of a larger project to develop and evaluate alternative forms of communication to facilitate cross-cultural consultations in primary care. As a case study and proof-of-concept, work was conducted with Somali refugees who tend to experience significant communication difficulties in primary care consultations. The alternative communication methods developed in this study originate from the field of Augmentative and Alternative Communication (AAC). These methods may include non-verbal communication or aided communication using a mix of pictographic symbols, bilingual text and digitised (recorded) or synthetic speech. These can be delivered on a range of paper-based or computer-based devices. A paper-based and computer-based method was developed to assess whether a group of literate and illiterate Somalis were able to answer a set of questions using these tools. The purpose of this preliminary study was to assess whether either of these communication methods were suitable for further evaluation in primary care consultations. Twenty Somalis were presented with three communication tools and were asked a set of general questions in Somali which they had to answer using each tool: (1) a paper-based communication book containing symbols and bilingual text labels; (2) a laptop PC with mouse pad containing the same symbols, text labels and augmented with digitised Somali speech; (3) a tablet PC w ith touch screen containing the same software and digitised Somali speech. These two computer-based delivery platforms were compared for ease of use among a participant group who are likely to have little computing experience. Each task was timed and scored for level of correctness; feedback was gained from Somalis and experimenters' observations were noted. Participants clearly found the computerised devices with Somali speech output easier to use and more acceptable than the simpler paper-based device

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses’ views on sharing decisions with patients regarding inhaler device selection. Health Expect

Abstract Background Although patients with asthma would like more involvement in the decision-making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice