Development of Breast Cancer Choices: a decision support tool for young women with breast cancer deciding whether to have genetic testing for BRCA1/2 mutations.

PURPOSE: To develop a decision support tool for young women with breast cancer considering genetic testing for BRCA1/2 mutations soon after cancer diagnosis. METHODS: A four-stage iterative development process was employed; stage 1, literature review exploring the availability and efficacy of empirically tested decision support tools; stage 2, in-depth interviews with 29 young women (< 50 years) recently diagnosed with breast cancer, exploring information requirements and experiences of genetic testing decision making; stage 3, three focus groups (N = 21) exploring preferences for information presentation and prioritisation of content; stage 4, think-aloud interviews to refine the prototype (N = 16). RESULTS: Participants wanted information regarding the pros and cons of testing, the testing process and implications for their family, presented in a way that allowed them to choose the level of detail they required. They preferred the term 'altered gene', valued a medical word definition function and warnings before accessing sensitive information. CONCLUSION: Participants valued the decision support tool, the accessibility of the information and its clinical endorsement. The decision support tool has considerable clinical utility as an adjunct to genetic counselling or for use in busy oncology clinics where formal genetic counselling may be unavailable.

Return to work after carpal tunnel release surgery: a qualitative interview study.

BACKGROUND: Carpal tunnel syndrome is a common nerve compression disorder which affects hand sensation and function. Carpal tunnel release surgery (CTR) is frequently performed to alleviate these symptoms. For many CTR patients, surgery occurs during their working lifetime, but there is currently no evidence-based guidance to inform clinicians or patients when it might be safe to return to different types of work afterwards. The aim of this qualitative study was to explore the return to work experiences of patients who had recently undergone CTR. METHODS: Semi-structured 1:1 interviews were conducted with a subgroup of participants recruited to a multi-centre prospective cohort study. Interviewees were purposely selected to represent a range of demographic, clinical and occupational characteristics. All had recently undergone CTR and had returned to work. Interviews were audio recorded, transcribed verbatim and analysed using the framework method. Participants were recruited until data saturation was achieved. RESULTS: Fourteen participants were interviewed: 11 women (median age 49 years, range 27-61) and 3 men (age range 51-68 years). Three key themes were identified. Theme 1 centred on the level of functional disability experienced immediately after surgery. There was an expectation that CTR would be a 'minor' procedure, but this did not match the participants' experiences. Theme 2 explored the desire for validation for the time away from work, with participants recalling a need to justify their work absence to themselves as well as to their employers. Theme 3 focused on the participants' reflections of handing their return to work and function, with many reporting uncertainties about what constituted appropriate activity loads and durations. There was a desire for specific information relating to individual work roles. CONCLUSION: Individual return to work decision-making was largely influenced by the recommendations received. According to the views of participants, clinicians may be able to prepare patients better pre-operatively, especially with respect to function in the immediate post-operative period and by providing return to work guidance that can be tailored for individual work roles.

Nursing and allied health professionals' views about using health literacy screening tools and a universal precautions approach to communication with older adults: a qualitative study.

Purpose: Health literacy describes individuals' abilities to access, understand and use health information. Lower health literacy is associated with poor health outcomes, is more common among older adults and impacts on the effectiveness of rehabilitation/self-management interventions. This research explored nursing and allied healthcare professionals' views about identifying and responding to older adults' health literacy needs.Methods: Qualitative focus groups were conducted with a purposive sample of 22 UK nursing and AHPs working with older adults. Focus groups were audio-recorded, transcribed verbatim and analyzed using framework approach.Results: Participants used a variety of practices to identify older patients' health literacy levels, but primarily relied on subtle cues. Participants lacked knowledge and confidence in identifying and addressing health literacy needs. Participants expressed concerns about patient reactions and described practical barriers to using recommended health literacy strategies.Conclusions: Participants recognized the importance of addressing patients' health literacy needs, but do not routinely use health literacy strategies, lack confidence and have reservations about recommended health literacy strategies. This impacts on healthcare professionals' abilities to support patients to self-manage and participate in rehabilitation. Health literacy education for health professionals should consider barriers to using health literacy strategies and be tailored to accommodate variation in teams and professions.Implications for rehabilitationRehabilitation professionals need to standardise their practice to health literacy, using strategies which can be easily integrated into routine practice.To meet older adults' health literacy needs, rehabilitation professionals should use clear and accessible tailored communication, build trust, assess understanding and involve patients' social networks.Rehabilitation professionals would benefit from further education regarding health literacy to build their knowledge/confidence and address their concerns about implementing health literacy strategies.Professional education regarding health literacy needs to accommodate variation between individuals and teams.

Integrating a Web-Based Self-Management Tool (Managing Joint Pain on the Web and Through Resources) for People With Osteoarthritis-Related Joint Pain With a Web-Based Social Network Support Tool (Generating Engagement in Network Involvement): Design, Development, and Early Evaluation.

BACKGROUND: Joint pain caused by osteoarthritis (OA) is highly prevalent and can be extremely debilitating. Programs to support self-management of joint pain can be effective; however, most programs are designed to build self-efficacy and rarely engage social networks. Digital interventions are considered acceptable by people with joint pain. However, many existing resources are not accessible for or developed alongside people with lower health literacy, which disproportionately affects people with OA. OBJECTIVE: This study aims to design and develop an accessible digital self-management tool for people with joint pain and integrate this with an existing social network activation tool (Generating Engagement in Network Involvement [GENIE]) and to explore the feasibility of these linked tools for supporting the management of joint pain. METHODS: The study was conducted in 2 phases: a design and development stage and a small-scale evaluation. The first phase followed the person-based approach to establish guiding principles for the development of a new site (Managing joint Pain On the Web and through Resources [EMPOWER]) and its integration with GENIE. People with joint pain were recruited from libraries, a community café, and an exercise scheme to take part in 3 focus groups. EMPOWER was tested and refined using think-aloud interviews (n=6). In the second phase, participants were recruited through the web via libraries to participate in a small-scale evaluation using the LifeGuide platform to record use over a 1-month period. Participants (n=6) were asked to complete evaluation questionnaires on their experiences. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework was used to explore the feasibility of the sites. RESULTS: The focus groups established guiding principles for the development of the tool. These included ensuring accessibility and relevance for people with OA-related joint pain and recognizing that joint pain is the reason for seeking support, trust, social facilitation, and goal setting. Think-aloud interviews identified issues with user experience and site navigation and the need for professional input for referral and goal setting, confusion, and tensions over the role of GENIE and site connectivity. Participants expected the sites to be specific to their pain-related needs. EMPOWER was accessed 18 times; 6 users registered with the site during the evaluation study. Participants mostly explored information pages on being active and being a healthy weight. Only one participant undertook goal setting and 4 participants visited the GENIE website. CONCLUSIONS: Using the NASSS framework, we identified the complexity associated with integrating EMPOWER and GENIE. The value proposition domain highlighted the technical and conceptual complexity associated with integrating approaches. Although identified as theoretically achievable, the integration of differing propositions may have caused cognitive and practical burdens for users. Nevertheless, we believe that both approaches have a distinct role in the self-management of joint pain.

Accessibility of online self-management support websites for people with osteoarthritis: A text content analysis.

OBJECTIVES: This study assessed accessibility of online self-management support webpages for people with osteoarthritis by considering readability of text and inclusion of images and videos. METHODS: Eight key search terms developed and agreed with patient and public involvement representatives were entered into the Google search engine. Webpages from the first page of Google search results were identified. Readability of webpage text was assessed using two standardised readability indexes, and the number of images and videos included on each webpage was recorded. RESULTS: Forty-nine webpages met the inclusion criteria and were assessed. Only five of the webpages met the recommended reading level for health education literature. Almost half (44.9%) of webpages did not include any informative images to support written information. A minority of the webpages (6.12%) included relevant videos. DISCUSSION: Information provided on health webpages aiming to support patients to self-manage osteoarthritis may not be read, understood or used effectively by many people accessing it. Recommendations include using accessible language in health information, supplementing written information with visual resources and reviewing content and readability in collaboration with patient and public involvement representatives.

The importance of building trust and tailoring interactions when meeting older adults' health literacy needs.

PURPOSE: Health literacy is the ability to access, understand and use health information. This study qualitatively explored the views and experiences of older adults with varying health literacy levels who had attended a falls clinic on their overall experience of the falls clinic, access to the service and provider-patient interaction. METHODS: Individual semi-structured interviews were conducted with nine older adults using a falls clinic in England. Health literacy was assessed using the REALM and NVS-UK. Interviews were audio-recorded, transcribed verbatim and interrogated using interpretative phenomenological analysis (IPA). RESULTS: Two superordinate themes emerged from the analysis: The importance of trust and relationship building to achieve effective communication with older adults; and the importance of tailoring education and healthcare to older adults' individual health literacy needs and preferences. CONCLUSIONS: The findings corroborate previous research emphasising the importance of face-to-face communication in responding to older adults' individual health literacy needs. Building trust in the relationship and tailoring communication to older adults' individual attributes and preferred learning styles is essential. Healthcare practitioners and managers should consider how service organisation and communication methods can enhance positive and effective relationships with patients. Improved training could support healthcare providers in meeting patients' personal communication needs. Implications for Rehabilitation Rehabilitation professionals should be aware of their patients' individual health literacy needs and communication/learning preferences. It is important to build relationships and trust with older adults attending rehabilitation services. Further training for rehabilitation professionals could support them in meeting patients' personal communication needs.

Psychosocial outcomes of a summer overnight recreational experience for children with heart disease.

Children with chronic heart disease (CHD) are often turned away from recreational summer overnight experiences because of complicated medical histories and medication regimens. The purpose of this qualitative study was to evaluate the psychosocial impact of a five-day overnight recreational experience for children with CHD and their parents. Thirty-six children with CHD between the age of 8 and 15 years and their parents participated in the study. Data were collected from the children using photovoice interviews. Parent data were collected using a post camp survey. Results included the following external outcome themes: inclusion in a peer group and the importance of friendship, fun, and safety. Internal or personal outcome themes included counselor as a role model, increased self-confidence, and the realization of life's possibilities. Parent themes included increased child independence, increased child confidence, and child feelings of normalcy related to belonging to a peer group. Findings from this study can be used to encourage families of children with CHD to allow participation in a well-supervised overnight recreational experience. Such an experience can foster the child's overall development, provide peer group support, and reduce parent anxiety about overnight separation from the child.