Personal experiences of health and illness on the web : a resource for patients, carers and health professionals

People are becoming savvier as health consumers when faced with the need to make decisions. They are turning to the internet for both factual and experiential information. DIPEx, an awardwinning, electronic, multi-media resource of personal experiences of health, illness and related issues on the web, addresses this need with evidence-based information alongside video, audio and written interview clips that identify issues that matter to people. The website is freely available 24 hours a day providing support for patients and their families, friends, carers and health professionals from the personal perspective.peer-reviewe

Perceptions of physicians in Saudi Arabia on the use of international clinical guidelines for managing primary insomnia

Introduction While there are no national clinical guidelines for managing primary insomnia in Saudi Arabia, there are also no published studies of physicians’ perceptions of and attitudes towards using international guidelines. The objective of this study was to explore the knowledge, perceptions, and attitudes of physicians practising in Saudi Arabia about using international guidelines for managing insomnia. Methods A qualitative study using in-depth, face-to-face, and semi-structured interviews with 15 physicians held in July 2017 at a tertiary care hospital in Jazan, the distal south-western province in Saudi Arabia. Interviews were audio-recorded, transcribed verbatim, coded using the qualitative software NVivo11 and analysed thematically. Data saturation was assumed as no new understandings of the broad thematic issues were produced by the last three interviews. Results Themes identified were: Knowledge, Resistance, Barriers and Facilitators. Participants acknowledged their lack of awareness of available guidelines and their lack of training and education about Cognitive Behavioural Therapy for Insomnia (CBT-I). They highlighted a lack of education for patients about insomnia and its treatment. Beliefs about dependence on hypnotics and the inappropriateness of international guidelines for Saudi Arabia inclined many to resist using them. Inability to document diagnosis and consultations due to limited time and lack of suitable electronic systems, lack of suitably trained practitioners for referral for CBT-I, and lack of accountability for practice were identified as key barriers to following international guidelines. Development of national guidelines was the most important facilitator suggested by participants. Conclusions The health authorities in the government of the Kingdom of Saudi Arabia (KSA) should improve general public awareness about sleep disorders and provide focused training for specialists and technologists. Above all, KSA needs its own nationwide guidelines for treating sleep-disorders based on evidence-based clinical trials, consistent with its history, culture, socioeconomic conditions and traditions

Current clinical practice for the use of hypnotics to manage primary insomnia in adults in a tertiary hospital in Saudi Arabia: an audit study

Despite the risks associated with hypnotics and their recent increased use in Saudi Arabia, there are no specific national guidelines for using these medicines to treat insomnia nor are there any data on how these medicines are currently prescribed. There is the potential, however, that some physicians might be adhering to the US guidelines. The current audit study was aimed to assess the current practice in treating insomnia with hypnotics in Saudi Arabia, and to evaluate its agreement with the US guidelines. The audit was conducted using data collected between April 2012 and March 2017 at King Fahad Central Hospital (KFCH; Jazan), of patients who were either prescribed benzodiazepines (BZDs) or Z-drugs or diagnosed with insomnia. The audit criteria followed two US guidelines for the management of insomnia in adults. Data included documented diagnosis, use of CBT-I (Cognitive Behavioral Therapy for Insomnia), use of BZDs and Z-drugs including treatment regimen, and whether physicians prescribed anti-histamines for insomnia. The data were analyzed using STATA 14 after transcription to a MS XL file. Of the 504 records reviewed, 379 patients (75%) were prescribed BZDs or Z-drugs; only 182 (48%) of them had clearly documented indications for their use. Three hundred and seven patients (60%) were diagnosed with insomnia; none of them received CBT-I as initial treatment. No patients on long-term use of hypnotics were reviewed by their physicians after they began using the medication. More than 43% of patients were prescribed anti-histamines for insomnia. No records met all (or even six) of the seven criteria. KFCH physicians do not follow US guidelines. Therefore, the Ministry of Health (MOH) should improve its administrative systems including documentation, and instead of using international guidelines that are seldom followed, physicians should be trained in prescribing hypnotics and national guidelines need to be developed

Using benzodiazepines and Z-Drugs for managing primary insomnia in adults in Saudi Arabia: an e-Delphi study to aid the development of clinical guidelines

Purpose: To obtain consensus statements required for the development of clinical guidelines for the use of benzodiazepines (BZDs) and Z-drugs for the management of primary insomnia in adults in Saudi Arabia. Methods: Three rounds of the e-Delphi technique using a Bristol Online Survey (BOS) were conducted between May and August 2018. The Director of the Saudi Sleep Medicine Group helped recruit the country’s sleep medicine experts. Snowballing was used to forward invitation emails, information sheets and the survey to known sleep medicine experts and physicians deemed to be interested in the field. All participants’ details were anonymized except to the researcher. Results: Fifteen experts from four different regions and specialities in Saudi Arabia participated in Round 1. Twenty-one statements originated from participants’ responses. In Round 2, there were 17 respondents and 16 of the statements obtained the required consensus of 70% or higher. Eleven experts participated in Round 3 and eight statements received 100% agreement, two received 91%, and six received 82%. Having obtained the required consensus of 80% or higher in Round 3, these 16 statements fulfilled the criteria to be included in future guidelines. The five statements that failed to attain the required consensus were rejected as inappropriate for inclusion in Saudi Arabian clinical guidelines. Conclusions: The items that achieved the required consensus can be included in future guidelines for the use of BZDs and Z-drugs in the treatment of primary insomnia in adults to standardize best practices in sleep medicine in Saudi Arabia

The impact of severe asthma on patients’ autonomy: a qualitative study

Background People living with severe asthma may have ongoing debilitating symptoms despite high‐dose treatment. Clinical guidelines for severe asthma recommend concepts such as patient centeredness, shared decision making and self‐management, at the heart of which lies autonomy. Objective This study aimed to explore the role of autonomy in patients’ narratives about their experiences of living with and managing severe asthma. Methods In‐depth semi‐structured interviews were video‐ and/or audio‐recorded and transcribed. Data were categorized using a hybrid approach to analysis incorporating both inductive and deductive methods, informed by the self‐determination construct of autonomy. Analysis and comparison across and within categories were conducted to develop final themes. Results Twenty‐nine face‐to‐face interviews, lasting 1.5‐4 hours, were conducted across Australia. Patients’ autonomy was enacted or challenged in a range of situations, such as interacting with health‐care providers, maintaining employment, managing symptoms, and dealing with threats to self‐identity. Two main themes were discerned from the analysis: (a) the desire to live an “unconstrained” life; and (b) preservation of self‐identity. Conclusion Our findings suggest that autonomy is broader than conventional medical concepts such as decision making and information seeking. Future research should consider these findings when developing and implementing patient‐driven self‐management interventions for those living with severe asthma

Capturing pharmacists' impact in general practice: an e-Delphi study to attempt to reach consensus amongst experts about what activities to record

Background: In the UK, there is ongoing integration of pharmacists into general practice as a new healthcare service in primary care. Evaluation of the service involves national measures that require pharmacists to record their work, on the general practice clinical computer systems, using electronic activity codes. No national agreement, however, has been established on what activities to record. The purpose of this study was to attempt to reach consensus on what activities general practice-based pharmacists should record. Methods: The e-Delphi method was chosen as it is an excellent technique for achieving consensus. The study began with an initial stage in which screening of a general practice clinical computer system and discussion groups with pharmacists from two ‘pharmacists in general practice’ sites identified 81 codes potentially relevant to general practice-based pharmacists’ work. Twenty-nine experts (pharmacists and pharmacy technicians from the two sites along with experts recruited through national committees) were then invited by e-mail to participate as a panel in three e-Delphi questionnaire rounds. In each round, panellists were asked to grade or rank codes and justify their choices. In every round, panellists were provided with anonymised feedback from the previous round which included their individual choices along with their co-panellists’ views. Final consensus (in Round 3) was defined as at least 80% agreement. Commentaries on the codes from all e-Delphi rounds were pooled together and analysed thematically. Results: Twenty-one individual panellists took part in the study (there were 12 responses in Round 1, 18 in Round 2 and 16 in Round 3). Commentaries on the codes included three themes: challenges and facilitators; level of detail; and activities related to funding. Consensus was achieved for ten codes, eight of which related to activities (general and disease specific medication reviews, monitoring of high-risk drugs and medicines reconciliation) and two to patient outcomes (presence of side effects and satisfactory understanding of medication). Conclusions: A formal consensus method revealed general practice-based pharmacists’ preferences for activity coding. Findings will inform policy so that any future shaping of activity coding for general practice-based pharmacists takes account of pharmacists’ actual needs and preferences

Gender and the language of pain in chronic and terminal illness: a corpus-based discourse analysis of patients’ narratives

Drawing on the notion of gender as a socially constructed category performed inter alia through language, this study examines the ways in which women and man use language to do person-in-pain in real-life interactions about chronic and terminal illness. It is based on a secondary analysis of a large corpus of health and illness narratives collected by the Health Experiences Research Group at the University of Oxford and published by the DIPEx charity. Sixteen chronic and terminal conditions were identified in which men and women talked about physical pain and their narratives examined using the linguistic approach of a corpus-assisted discourse analysis. Our study shows that there are significant quantitative and qualitative differences in the ways in which women and men report pain pointing to the existence of distinctive feminine and masculine lexical repertoires of pain talk. While these repertoires conform to some of the dominant societal stereotypes surrounding masculinity and femininity, they also transgress those. Women refer to pain more frequently and have a wider lexical repertoire for pain reporting. They use more specific and factual references as well as cognitive and psychological words in their pain talk. In contrast, men tend to use fewer descriptors in general, most of which are highly emotive suggesting that they report pain when it becomes unbearable enduring it until this point. There is also a conspicuous absence of references to psychological processes in the male narratives and the focus is on pain killers. Understanding this nuanced role of gender in communicating pain can help health professionals respond effectively to people’s talk about pain and develop more holistic practices in pain consultation, assessment and treatment leading potentially to the reduction of gender biases and inequalities in healthcar

Resilient health care: a systematic review of conceptualisations, study methods and factors that develop resilience

Background Traditional approaches to safety management in health care have focused primarily on counting errors and understanding how things go wrong. Resilient Health Care (RHC) provides an alternative complementary perspective of learning from incidents and understanding how, most of the time, work is safe. The aim of this review was to identify how RHC is conceptualised, described and interpreted in the published literature, to describe the methods used to study RHC, and to identify factors that develop RHC. Methods Electronic searches of PubMed, Scopus and Cochrane databases were performed to identify relevant peer-reviewed studies, and a hand search undertaken for studies published in books that explained how RHC as a concept has been interpreted, what methods have been used to study it, and what factors have been important to its development. Studies were evaluated independently by two researchers. Data was synthesised using a thematic approach. Results Thirty-six studies were included; they shared similar descriptions of RHC which was the ability to adjust its functioning prior to, during, or following events and thereby sustain required operations under both expected and unexpected conditions. Qualitative methods were mainly used to study RHC. Two types of data sources have been used: direct (e.g. focus groups and surveys) and indirect (e.g. observations and simulations) data sources. Most of the tools for studying RHC were developed based on predefined resilient constructs and have been categorised into three categories: performance variability and Work As Done, cornerstone capabilities for resilience, and integration with other safety management paradigms. Tools for studying RHC currently exist but have yet to be fully implemented. Effective team relationships, trade-offs and health care ‘resilience’ training of health care professionals were factors used to develop RHC. Conclusions Although there was consistency in the conceptualisation of RHC, methods used to study and the factors used to develop it, several questions remain to be answered before a gold standard strategy for studying RHC can confidently be identified. These include operationalising RHC assessment methods in multi-level and diverse settings and developing, testing and evaluating interventions to address the wider safety implications of RHC amidst organisational and institutional change

Case Study: Conservative Stocking on the Fitzroy River Floodplain; Jubilee Downs and Quanbun Downs, Central Kimberley Western Australia

Keith and Karen Anderson and family run a breeder operation on Jubilee Downs and Quanbun Downs in the Fitzroy Valley of Western Australia (18°21\u27 S, 125°18\u27 E). These adjacent pastoral leases are in the shire of Derby/West Kimberley. The Andersons have been managing Jubilee Downs station since 1985. Quanbun Downs station was purchased in 2002, and a farm in the northern agricultural region of WA has been recently added for use as a finishing block. The current combined herd for Jubilee Downs and Quanbun Downs is around 8,000 head. Keith believes in selling close to his branding percentage and that the secret to improving production is selling females. A declining trend in range condition on the high potential black soil country (WA Department of Agriculture 1981) was the catalyst for a producer demonstration trial on Jubilee Downs station that commenced in 1988. The main aspects of the demonstration were using DAFWA recommended stocking rates according to land type and range condition, introduction of Brahman bulls from a predominantly shorthorn herd, pregnancy diagnosis, early weaning and botulism vaccinations (Beurle 1992). The demonstration also included an exclosure on the degraded Gogo land system which yielded positive results. Reducing cattle numbers and improving grazing distribution has maximised the recovery of the country during the run of above average rainfall years from the mid-1990s to 2010. Range Condition Survey data and satellite imagery clearly demonstrate an improvement in range condition and the productive potential. Herd production data show that the benefits of improved productivity to the business outweigh the costs

Understanding safety differently: developing a model of resilience in the use of intravenous insulin infusions in hospital in-patients - a feasibility study protocol

Background Intravenous (IV) insulin infusions are considered the treatment of choice for critically ill patients and non-critically ill patients with persistent raised blood glucose who are unable to eat, to achieve optimal blood glucose levels. The benefits of using IV insulin infusions as well as the problems experienced are well described in the scientific literature. Traditional approaches for improving patient safety have focused on identifying errors, understanding their causes and designing solutions to prevent them. Such approaches do not take into account the complex nature of healthcare systems, which cannot be controlled solely by following standards. An emerging approach called Resilient Health Care proposes that, to improve safety, it is necessary to focus on how work can be performed successfully as well as how work has failed. Methods and analysis The study will be conducted at Oxford University Hospitals NHS Foundation Trust and will involve three phases: Phase I: explore how work is imagined by analysing IV insulin infusion guidelines and conducting focus group discussions with guidelines developers, managers and healthcare practitioners. Phase II: explore the interplay between how work is imagined and how work is performed using mixed methods. Quantitative data will include blood glucose levels, insulin infusion rates, number of hypoglycaemic and hyperglycaemic events from patients’ electronic records. Qualitative data will include video reflexive ethnography: video-recording healthcare practitioners using IV insulin infusions and then conducting reflexive meetings with them to discuss selected video footage. Phase III: compare findings from Phase I and Phase II to develop a model for using IV insulin infusions