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Aim: To describe and interpret the sexual health experiences of men with IBD. Design: Interpretive qualitative study. Methods: In‐depth, semi‐structured interviews were conducted with 22 men with a diagnosis of Inflammatory Bowel Disease. Interviews were digitally audio‐recorded and transcribed verbatim. Data were analysed using constant comparative, thematic analysis. Results: Three themes were identified from interview data: (1) the disease shapes intimate connections, (2) the disease thwarts sexual experiences and (3) the disease disrupts male gender norms. Men reported that active disease lowered libido and could change pre‐, inter‐ and post‐coital sexual practices. All participants noted that health professionals did not initiate the discussion of sexual health and well‐being needs in the outpatient hospital setting. Men who engaged in receptive anal sex reported a lack of disease‐specific guidance and understanding from professionals. Conclusion: Inflammatory bowel disease can negatively impact the sexual well‐being, gender identity and activities of men. Further research is required to identify the care preferences of men with IBD and clarify the barriers and facilitators to sexual health assessment so that nurses may better support the health needs of this population. Implications for the Profession and Patient Care: This study highlights the need for sexual health and well‐being support that is specific to disease and gender in IBD. There is a paucity of information and guidance for men with peri‐anal disease and proctitis who engage in receptive anal sex, which requires urgent attention. Reporting Method: Reporting follows the COREQ checklist. Patient or Public Contribution: A patient and public involvement group informed the development of the study design. The group reviewed public facing documents and interview guides. One member of the group provided comments on the identified themes. [ABSTRACT FROM AUTHOR]

Background: Randomised controlled trials are widely established as the best method for testing health interventions whilst minimising bias. However, recruitment and subsequent retention of children and adolescents in healthcare trials is challenging. Participant information sheets are often lengthy and difficult to read and understand. Presenting key information using multimedia may help to overcome these limitations and better support young people and their parents in deciding whether to participate in a clinical trial.Methods: The TRECA (TRials Engagement in Children and Adolescents) study has two phases. The first phase involves a qualitative study with children and adolescents and their parents to inform the development of multimedia information resources and iterative user testing to refine the resources. The second phase will embed the use of the multimedia information resources into six host trials in the United Kingdom. Patients and parents approached to participate in the host trials will be randomly allocated to either use the multimedia information resource in conjunction with standard participant information sheets, the multimedia information resource alone, or the standard participant information sheets alone. The primary outcome will be the effect of the multimedia information resources on recruitment into trials. Other outcomes measured include the effect of multimedia information resources on retention of participants into the host trials and the impact on family members' decision-making processes, when compared to standard participant information sheets alone.Discussion: This study will inform whether multimedia information resources, when developed using participatory design principles, are able to increase recruitment and retention of children and adolescents into trials. There is also the potential for patients to make better informed decisions through the use of multimedia information resources. The multimedia information resources also have the potential to assist with providing information on other healthcare decisions outside of clinical trials.Trial Registration: ISRCTN registry: ISRCTN73136092 (doi: 10.1186/ISRCTN73136092 ). Registered on 24 August 2016. [ABSTRACT FROM AUTHOR]

Background: In the European Union (EU), all medicines are mandated to be provided with a patient information leaflet (PIL). Many patients express concerns about the length and complexity of some PILs, and this can be a disincentive for patients to read the PILS. In order to address this, the UK’s regulatory body (Medicine and Healthcare products Regulatory Agency [MHRA]) suggested leaflets might include a headline section—information presented prominently at the beginning of a leaflet that summarizes key safety messages about a drug. Objective: To explore the extent to which readers used a headline section in a PIL, using a form of diagnostic testing called user-testing, which examines how readers find and understand key information. Methods: The study used a cross-sectional design to user-test a PIL with a headline section in a target sample of 20 participants. Participants were provided with an exemplar PIL, and the performance of the PIL was evaluated by a questionnaire and semistructured interview. Results: The results showed that a headline section was used just over one-third of the time (39%); 90% of participants used the headline section to find information when they initially began the user-test. The qualitative findings suggested that the participants valued the presence of the headline section. Conclusion: The research suggests there does not appear to be any negative impact from including a headline section in a PIL, and it is a technique that is highly valued by the consumers of medicines information. [ABSTRACT FROM AUTHOR]

Background There is no available evidence providing detailed and valid accounts of how people with schizophrenia construct meaning in their lives. Aim To explore the lived experiences of people with schizophrenia who had been prescribed atypical antipsychotic medications. Methods Adopting a phenomenological approach, a purposive sample of 19 adults with schizophrenia provided data using a combination of daily diaries and individual face-to-face interviews. Findings Five core themes were evident in the data: social isolation, stigma, quality of life, confidence and social networks. The findings provide a distinctive, enlightening and encouraging insight into how people diagnosed with schizophrenia live their lives. Conclusion Participants reported a loss of identity and control over their lives and they said that stigma continues to have a detrimental effect on their lived experiences. However, despite these impairments, many of the participants managed to integrate themselves into the community and participate in meaningful activities associated with everyday living. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore the effects of type 2 diabetes on British-Pakistani women's identity and its relationship with self-management. Background Type 2 diabetes is more prevalent and has worse outcomes among some ethnic minority groups. This may be due to poorer self-management and an inadequate match of health services to patient needs. The influence that type 2 diabetes has on British-Pakistani women's identity and subsequent self-management has received limited attention. Design An explorative qualitative study. Methods Face-to-face semi-structured English and Urdu language interviews were conducted with a purposively selected heterogeneous sample of 15 British-Pakistani women with type 2 diabetes. Transcripts were analysed thematically. Results Four themes emerged: Perceived change in self emphasised how British-Pakistani women underwent a conscious adaptation of identity following diagnosis; Familiarity with ill health reflected women's adjustment to their changed identity over time; Diagnosis improves social support enabled women to accept changes within themselves and Supporting family is a barrier to self-management demonstrated how family roles were an aspect of women's identities that was resilient to change. The over-arching theme Role re-alignment enables successful self-management encapsulated how self-management was a continuous process where achievements needed to be sustained. Inter-generational differences were also noted: first generation women talked about challenges associated with ageing and co-morbidities; second generation women talked about familial and work roles competing with self-management. Conclusions The complex nature of British-Pakistani women's self-identification requires consideration when planning and delivering healthcare. Relevance to clinical practice Culturally competent practice should recognise how generational status influences self-identity and diabetes self-management in ethnically diverse women. Health professionals should remain mindful of effective self-management occurring alongside, and being influenced by, other aspects of life. [ABSTRACT FROM AUTHOR]

Objective: To use performance-based user-testing to evaluate the effectiveness of balance appointment patient information leaflets (PILs) in conveying important information. Design: The study used a sequential groups design. Twenty participants were asked to find and demonstrate understanding of 11 key points of information contained within two NHS leaflets, A and B (10 participants each), through individual structured-interviews. Participants' views of the leaflets were explored through a short semi-structured interview. Following analysis, a revised leaflet was developed and tested on a further 20 participants. Study sample: 40 participants (25F/15M, aged 46-72) with no experience of balance problems or balance assessment appointments. Results: Participants exhibited difficulties with finding and/or understanding 5/11 and 6/11 points of information within leaflets A and B, respectively. Five out of eleven points of the revised leaflet also posed problems. Ten out of eleven points were understood by > 90% of participants testing the revised leaflet compared with 6/11 points for leaflets A and B. Conclusions: Some balance appointment PILs contain information which is difficult to find and/or understand for some readers. PILs should be evaluated prior to use using performance-based methods, since poor information provision may lead to increased patient anxiety and appointment non-attendance, cancellation, or postponement. [ABSTRACT FROM AUTHOR]

Purpose: This study implemented performance-based usability and literature testing to determine whether people could use 2 instruction booklets for hearing aids (HAs) to carry out basic maintenance tasks and find and understand key facts. Method: Using a cross-sectional study design, researchers recruited 40 participants (25 women, 15 men, ages 46-72 years) with no experience of HAs or audiology services to test instruction booklets for a Danalogic and Unitron HA (20 participants each). Participants were asked to follow instructions provided within the booklets to complete common HA tasks (e.g., cleaning the HA and mold and changing the battery) and demonstrate understanding of information. Participants' views of the booklets were then obtained within a short individual interview. Results: Participants experienced problems in completing all tasks while following instructions provided by the Danalogic and Unitron booklets. Individual interviews highlighted further issues regarding layout, diagrams, and content, including missing information. Conclusions: Some HA instruction booklets contain information that some users may find difficult to find, understand, and follow. These limitations may negatively impact on HA satisfaction and use. It is recommended that written information for clients be evaluated prior to use. This study supports the premise that performance-based usability and literature testing are appropriate methods to use. [ABSTRACT FROM AUTHOR]

Objective: Written medicine information is essential to support spoken information from pharmacists, but must be fit-for-purpose. This study applied “user testing” to the booklet supplied to UK patients taking anticoagulant medicines. Methods: “User testing” uses mixed-methods, applied iteratively, to assess document performance – can people find and understand key points of information through a questionnaire and short semi-structured interview. The booklet was tested in 3 rounds of 10 people. After each round it was revised according to participants’ responses, and re-tested. Results: The first round questionnaire identified problems with 6/18 information points (booklet purpose; other information; what affected daily doses; effect of ibuprofen; tablet colour; drinking alcohol); interviews raised further issues. The booklet was revised and, in the second testing round, one problem identified (changing doses of other medicines); the interviews raised fewer issues. After further re-wording and re-design, a third round showed all questions found and understood by at least 8/10 participants. Conclusion: User testing assesses whether people can find and understand key information and can be applied using small numbers of participants. Application to medicine information can markedly improve performance. Practice implications: Information producers should consider user testing to ensure documents are ‘fit for purpose’ in informing patients. [Copyright &y& Elsevier]

Background: Low adherence of older people to multiple medicine regimens is of widespread concern, and multi-compartment compliance aids are frequently supplied to older people in an attempt to improve their ability to take all their medicines at home. However, the evidence base for the use of such aids is very limited, and there is some evidence that they are used inappropriately. Objective: We aimed to determine how the attitudes and beliefs of older people and healthcare professionals impacted on the use of multi-compartment compliance aids by older people living at home. Method: This was a qualitative study using grounded theory. Semi-structured interviews were conducted with 15 older people (mean age 82 [range 72-92] years) living independently in the community and receiving primary healthcare from two health service organizations in a large northern UK city. We then interviewed 17 healthcare professionals working in primary, secondary or intermediate care and involved in the provision of multi-compartment compliance aids. Results: Maintaining independence and remaining in control was important for all the older people interviewed, and professionals supported the view that this influenced patients' attitudes towards using their aid. Some patients saw the aids as helping to maintain independence, others as casting doubt on their independence. The aids were often issued without discussion with the patient. The patients largely agreed that the aids did not help with memory problems and that the decision to issue an aid could be seen as paternalistic. A minority of patients had difficulties using the aids. Conclusions: Careful multi-disciplinary assessment of older people is required before a compliance aid is provided. The views of the older person must be considered and respected. Further research is required to produce an evidence base for the use of such aids in this group of people. [ABSTRACT FROM AUTHOR]