Integrating service user and practitioner expertise within a web-based system for collaborative mental-health risk and safety management

Objectives: To develop a decision support system (DSS), myGRaCE, that integrates service user (SU) and practitioner expertise about mental health and associated risks of suicide, self-harm, harm to others, self-neglect, and vulnerability. The intention is to help SUs assess and manage their own mental health collaboratively with practitioners. Methods: An iterative process involving interviews, focus groups, and agile software development with 115 SUs, to elicit and implement myGRaCE requirements. Results: Findings highlight shared understanding of mental health risk between SUs and practitioners that can be integrated within a single model. However, important differences were revealed in SUs' preferred process of assessing risks and safety, which are reflected in the distinctive interface, navigation, tool functionality and language developed for myGRaCE. A challenge was how to provide flexible access without overwhelming and confusing users. Conclusion: The methods show that practitioner expertise can be reformulated in a format that simultaneously captures SU expertise, to provide a tool highly valued by SUs. A stepped process adds necessary structure to the assessment, each step with its own feedback and guidance. Practice Implications: The GRiST web-based DSS (www.egrist.org) links and integrates myGRaCE self-assessments with GRiST practitioner assessments for supporting collaborative and self-managed healthcare.

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

Online information seeking by patients with bipolar disorder:results from an international multisite survey

Background: Information seeking is an important coping mechanism for dealing with chronic illness. Despite a growing number of mental health websites, there is little understanding of how patients with bipolar disorder use the Internet to seek information. Methods: A 39 question, paper-based, anonymous survey, translated into 12 languages, was completed by 1222 patients in 17 countries as a convenience sample between March 2014 and January 2016. All patients had a diagnosis of bipolar disorder from a psychiatrist. Data were analyzed using descriptive statistics and generalized estimating equations to account for correlated data. Results: 976 (81 % of 1212 valid responses) of the patients used the Internet, and of these 750 (77 %) looked for information on bipolar disorder. When looking online for information, 89 % used a computer rather than a smartphone, and 79 % started with a general search engine. The primary reasons for searching were drug side effects (51 %), to learn anonymously (43 %), and for help coping (39 %). About 1/3 rated their search skills as expert, and 2/3 as basic or intermediate. 59 % preferred a website on mental illness and 33 % preferred Wikipedia. Only 20 % read or participated in online support groups. Most patients (62 %) searched a couple times a year. Online information seeking helped about 2/3 to cope (41 % of the entire sample). About 2/3 did not discuss Internet findings with their doctor. Conclusion: Online information seeking helps many patients to cope although alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites.

Oral anticoagulation in atrial fibrillation, the patients and physicians experiences of the consultation:a qualitative study

Background: Oral anticoagulation (OAC) reduces stroke risk in patients with atrial fibrillation (AF), however it is still underutilized and sometimes refused by patients. This project was divided in two inter-related studies. Study 1 explored the experiences that influence prescription of OAC by physicians. Study 2 explored the experiences which influence patients' decisions to accept, decline or discontinue OAC. Methods: Semi-structured individual interviews were conducted in both studies. In Study 1four sub-groups of physicians (n = 16) experienced with OAC in AF were interviewed: consultant cardiologists, consultant general physicians, general practitioners and cardiology registrars. In Study 2 three sub-groups of patients (n = 11) diagnosed with AF were interviewed; those who accepted, refused, and who discontinued warfarin. Results: Study 1: Two over-arching themes emerged from doctors' experiences: (1) communicating information and (2) challenges with OAC prescription for AF. Physicians still adopt a paternalistic approach to decision-making. They should instead motivate patients to take part in treatment discussions and choices should reflect the patient's needs and concerns. Physician education should focus more on communication skills, individualised care and time-management as these are critical for patient adherence. Continuous OAC education for AF should adopt a multi-disciplinary approach. Further, interpreters should also be educated on medical communication skills. Study 2: Three over-arching themes comprised patients' experiences: (1) the initial consultation, (2) life after the consultation, and (3) patients' reflections. Patient education during the initial consultation was critical in increasing patient's knowledge of OAC. On-going patient education is imperative to maintain adherence. Patients valued physicians' concern for their needs during decision-making. Patients who had experience of stroke were more receptive to education aimed towards stroke risk reduction rather than bleeding risk. Patients' perceptions of warfarin are also influenced by the media. Comment: Qualitative research is crucial in exploring barriers to treatment as it provides an excellent insight into patients' experiences of healthcare. A patient-centred approach should be adopted and incorporated into physicians' education. Education and patient involvement in the decision-making process is essential to promote treatment acceptance and long-term adherence

Issues of cause and control in patient accounts of Type 2 diabetes

Patients experience considerable difficulties in making and sustaining health-related lifestyle changes. Many Type 2 diabetes patients struggle to follow disease risk-management advice even when they receive extensive information and support. Drawing on a qualitative study of patients with Type 2 diabetes, the paper uses discourse analysis to examine their accounts about disease causation and disease management, and the implications for how they respond to their condition and health services advice. As it is a multifactorial disease, biomedical discourse around Type 2 diabetes is complex. Patients are encouraged to grasp the complicated message that both cause and medical outcomes related to their condition are partly, but not wholly, within their control. Discursive constructions identified from respondent accounts indicate how these two messages are deployed variously by respondents when accounting for disease causation and management. While these constructions (identified in respondent accounts as 'Up to me' and 'Down to them') are a valuable resource for patients, equally they may be deployed in a selective and detrimental way. We conclude that clear messages from health professionals about effective disease management may help patients to position themselves more effectively in relation to their condition. More importantly, they might serve to hinder the availability of inappropriate and potentially harmful patient positions where patients either relinquish responsibility for disease management or reject all input from health professionals. © The Author 2005. Published by Oxford University Press. All rights reserved.

Pharmacy (ISSN 2226-4787):a journal of pharmacy education and practice

A journal of pharmacy education and practice is an international scientific open access journal on pharmacy education and practice, and is published by MDPI online quarterly. The practice of pharmacy is changing at an unprecedented rate as the profession moves from a focus upon preparation and supply of medicines to a clinical patient-facing role. While an understanding of the science related to medicines remains core to pharmacy education, the changes in practice are driving changes to the traditional methods of pharmacy education. This is reflected at an international level by major changes in the educational standards set by statutory regulators and by policy statements from bodies such as the World Health Organisation. These changes reflect an increasing trend to look at educational policy at a supra-national level, typified by the “Pharmine Project” led by the Association of European Faculties of Pharmacy.

How education should link with career paths

How good is your pharmacy practice? And what does “good” look like? Take a look back at the education and training you have received in your career to date. Has it stood you in good stead? Certainly there is a need to establish a model of professional education and development that produces good pharmacists — you should be able to demonstrate your competence regardless of your sector of work. It may help if we move away from the view that excellence in pharmacy practice is primarily defined by where you practise and the kind of job that you do. The Modernising Pharmacy Careers programme’s aspirations to integrate the undergraduate degree with the preregistration training year are bold and to be applauded — provided the outcome delivers changes that are more than superficial. The new model needs to deliver greater integration of education with practice, while retaining an adequate science base. Theory should be put into the context of practice-based, cross-sector learning needs and opportunities. For example, is the classroom really the best environment in which to learn dispensing? Pharmacokinetic theory could be put into context through creatively designed work placements. And it might make more sense to learn patient counselling in a community pharmacy, and so on. Is it resources we lack to make this happen? Or do we lack the collective will to be imaginative, to be radical and to conceive new approaches to professional education? Implicit in this new approach to education is the expectation that pharmacists should teach and mentor and, conversely, that those who teach should also engage in relevant practice. University education must produce graduates whose knowledge and competence are useful to employers. Moreover, graduates must be adequately prepared to enter any area of the profession endowed with professional self-confidence (something, arguably, that needs further development within the pharmacy psyche). Of course, becoming qualified is just the beginning. Post-qualification, pharmacists need structured career paths that foster this professional confidence, support learning and ensure recognition. To this end, the Royal Pharmaceutical Society-led professional curriculum group is working to define knowledge, skills and experience for all areas of advanced practice. More than ever, the profession needs to adopt a culture of learning, teaching and practice research that is unified. The question is: how do we move away from merely collecting qualifications (trophies) to developing meaningful careers? Pharmacists in all areas and at all levels of the profession need to consider their own willingness to make this shift. The RPS and MPC are leading the way, but are we following?