Securing recruitment and obtaining informed consent in minority ethnic groups in the UK

Background: Previous health research has often explicitly excluded individuals from minority ethnic backgrounds due to perceived cultural and communication difficulties, including studies where there might be language/literacy problems in obtaining informed consent. This study addressed these difficulties by developing audio-recorded methods of obtaining informed consent and recording data. This report outlines 1) our experiences with securing recruitment to a qualitative study investigating alternative methods of data collection, and 2) the development of a standardised process for obtaining informed consent from individuals from minority ethnic backgrounds whose main language does not have an agreed written form. Methods: Two researchers from South Asian backgrounds recruited adults with Type 2 diabetes whose main language was spoken and not written, to attend a series of focus groups. A screening tool was used at recruitment in order to assess literacy skills in potential participants. Informed consent was obtained using audio-recordings of the patient information and recording patients' verbal consent. Participants' perceptions of this method of obtaining consent were recorded. Results: Recruitment rates were improved by using telephone compared to face-to-face methods. The screening tool was found to be acceptable by all potential participants. Audio-recorded methods of obtaining informed consent were easy to implement and accepted by all participants. Attrition rates differed according to ethnic group. Snowballing techniques only partly improved participation rates. Conclusion: Audio-recorded methods of obtaining informed consent are an acceptable alternative to written consent in study populations where literacy skills are variable. Further exploration of issues relating to attrition is required, and a range of methods may be necessary in order to maximise response and participation

Measuring capacity building in communities: a review of the literature

<p>Abstract</p> <p>Background</p> <p>Although communities have long been exhorted to make efforts to enhance their own health, such approaches have often floundered and resulted in little or no health benefits when the capacity of the community has not been adequately strengthened. Thus being able to assess the capacity building process is paramount in facilitating action in communities for social and health improvement. The current review aims to i) identify all domains used in systematically documented frameworks developed by other authors to assess community capacity building; and ii) to identify the dimensions and attributes of each of the domains as ascribed by these authors and reassemble them into a comprehensive compilation.</p> <p>Methods</p> <p>Relevant published articles were identified through systematic electronic searches of selected databases and the examination of the bibliographies of retrieved articles. Studies assessing capacity building or community development or community participation were selected and assessed for methodological quality, and quality in relation to the development and application of domains which were identified as constituents of community capacity building. Data extraction and analysis were undertaken using a realist synthesis approach.</p> <p>Results</p> <p>Eighteen articles met the criteria for this review. The various domains to assess community capacity building were identified and reassembled into nine comprehensive domains: "learning opportunities and skills development", "resource mobilization", "partnership/linkages/networking", "leadership", "participatory decision-making", "assets-based approach", "sense of community", "communication", and "development pathway". Six sub-domains were also identified: "shared vision and clear goals", "community needs assessment", "process and outcome monitoring", "sustainability", "commitment to action" and "dissemination".</p> <p>Conclusions</p> <p>The set of domains compiled in this review serve as a foundation for community-based work by those in the field seeking to support and nurture the development of competent communities. Further research is required to examine the robustness of capacity domains over time and to examine capacity development in association with health or other social outcomes.</p

Enhancing provision of written medicine information in Australia: Pharmacist, general practitioner and consumer perceptions of the barriers and facilitators

Background: Written medicine information can play an important role in educating consumers about their medicines. In Australia, standardised, comprehensive written information known as Consumer Medicine Information (CMI) is available for all prescription medicines. CMI is reportedly under-utilised by general practitioners (GPs) and community pharmacists in consultations, despite consumer desire for medicine information. This study aimed to determine consumers', GPs' and community pharmacists' preferences for CMI provision and identify barriers and facilitators to its use. Method. Structured questionnaires were developed and administered to a national sample of Australian consumers (phone survey), community pharmacists and GPs (postal surveys) surrounding utilisation of CMI. Descriptive and comparative analyses were conducted. Results: Half of consumers surveyed wanted to receive CMI for their prescription medicine, with spoken information preferable to written medicine information for many consumers and healthcare professionals. GPs and pharmacists remained a preferred source of medicine information for consumers, although package inserts were appealing to many among all three cohorts. Overall pharmacists were the preferred provider of CMI primarily due to their medicine expertise, accessibility and perceived availability. GPs preferred CMI dissemination through both the GP and pharmacist. Some consumers preferred GPs as the provider of medicines information because of their knowledge of the patients' medicines and/or medical history, regularity of seeing the patient and good relationship with the patient. Common barriers to CMI provision cited included: time constraints, CMI length and perceptions that patients are not interested in receiving CMI. Facilitators to enhance provision included: strategies to increase consumer awareness, longer consultation times and counseling appointments, and improvements to pharmacy software technology and workflow. Conclusion: Medicine information is important to consumers, whether as spoken, written or a combination of both. A tailored approach is needed to ascertain individual patient preference for delivery and scope of medicine information desired so that appropriate information is provided. The barriers of time and perceived attitudes of healthcare practitioners present challenges which may be overcome through changes to workplace practices, adoption of identified facilitators, and education about the positive benefits of CMI as a tool to engage and empower patients

Impact of Vietnamese written and verbal medicine information on Vietnamese-speaking Australians' knowledge and satisfaction

What is already known about this subjectWritten consumer medicine information has been associated with increased medicine knowledge, satisfaction and adherence to therapy, especially in combination with verbal counselling.Increasing internationally standardized and compulsory consumer medicine information leaflets are being prepared, primarily by pharmaceutical manufacturers.However, no studies have investigated the impact of Vietnamese standardized written information leaflets on consumers' medicine knowledge and satisfaction with information received.What this study addsVietnamese written medicine information was developed for three drug classes.There was an increase in consumers' medicine knowledge and satisfaction with the information received, after receiving written and verbal medicine information in Vietnamese (the consumers' native language).The increases in satisfaction and knowledge were maintained 2 months after receiving the information