Coproduction of a theory-based digital resource for unpaid carers (the care companion) : mixed-methods study

Background: Family and other unpaid carers are crucial to supporting the growing population of older people that are living outside residential care with frailty and comorbidities. The burden associated with caring affects carers’ well-being, thus limiting the sustainability of such care. There is a need for accessible, flexible, and responsive interventions that promote carers’ coping and resilience, and hence support maintenance of the health, well-being, and independence of the cared-for person. Objective: This study aimed to coproduce a digital program for carers to promote resilience and coping through supporting effective use of information and other Web-based resources. Its overlapping stages comprised the following: understanding the ways in which Web-based interventions may address challenges faced by carers, identifying target behaviors for the intervention, identifying intervention components, and developing the intervention prototype. Methods: The study was informed by person-based theories of coproduction and involved substantial patient and public involvement. It drew on the Behavior Change Wheel framework to support a systematic focus on behavioral issues relevant to caring. It comprised scoping literature reviews, interviews, and focus groups with carers and organizational stakeholders, and an agile, lean approach to information technology development. Qualitative data were analyzed using a thematic approach. Results: Four behavioral challenges were identified: burden of care, lack of knowledge, self-efficacy, and lack of time. Local health and social care services for carers were only being accessed by a minority of carers. Carers appreciated the potential value of Web-based resources but described difficulty identifying reliable information at times of need. Key aspects of behavior change relevant to addressing these challenges were education (increasing knowledge and understanding), enablement (increasing means and reducing barriers for undertaking caring roles), and persuasion (changing beliefs and encouraging action toward active use of the intervention). In collaboration with carers, this was used to define requirements for the program. A resources library was created to link to websites, Web-based guidance, videos, and other material that addressed condition-specific and generic information. Each resource was classified according to a taxonomy itemizing over 30 different subcategories of need under the headings Care Needs (of the cared-for person), General Information and Advice, and Sustaining the Carer. In addition, features such as a journal and mood monitor were incorporated to address other enablement challenges. The need for proactive, personalized prompts emerged; the program regularly prompts the carer to revisit and update their profile, which, together with their previous use of the intervention, drives notifications about resources and actions that may be of value. Conclusions: The person-based approach allowed an in-depth understanding of the biopsychosocial context of caring to inform the production of an engaging, relevant, applicable, and feasible Web-based intervention. User acceptance and feasibility testing is currently underway

Men don't talk about their health, but will they CHAT? The potential of online holistic needs assessment in prostate cancer

Men don't talk about their health is a familiar trope. Evidence suggests that in the United States (US) and in the United Kingdom (UK) this is indeed the case. A survey of five hundred men in the US over the age of eighteen reported only 7% discussing their health with their peers [1]. Only 42% of men surveyed were prepared to consult a health care professional over a worrying symptom

A web-based prostate cancer–specific holistic needs assessment (CHAT-P) : multimethod study from concept to clinical practice

Background: Men with prostate cancer experience immediate and long-term consequences of the disease and its treatment. They require both long-term monitoring for recurrence or progression and follow-up to identify and help manage psychosocial and physical impacts. Holistic Needs Assessment aims to ensure patient-centered continuing cancer care. However, paper-based generic tools have had limited uptake within cancer services, and there is little evidence of their impact. With the expansion of remote methods of care delivery and to enhance the value of generic tools, we developed a web-based Composite Holistic Needs Assessment Adaptive Tool-Prostate (CHAT-P) specifically for prostate cancer. Objective: This paper described the context, conceptual underpinning, and approach to design that informed the development of CHAT-P, starting from the initial concept to readiness for deployment. Through this narrative, we sought to contribute to the expanding body of knowledge regarding the coproduction process of innovative digital systems with potential for enhanced cancer care delivery. Methods: The development of CHAT-P was guided by the principles of coproduction. Men with prostate cancer and health care professionals contributed to each stage of the process. Testing was conducted iteratively over a 5-year period. An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. Results: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men’s psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. Conclusions: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers

Young people who have fallen through the mental health transition gap : a qualitative study on primary care support

Background Owing to poor continuity of care between child and adult mental health services, young people are often discharged to their GP when they reach the upper boundary of child and adolescent mental health services (CAMHS). This handover is poorly managed, and GPs can struggle to support young people without input from specialist services. Little is known about young people’s experiences of accessing mental health support from their GP after leaving CAMHS. Aim To explore the experiences and perspectives of young people and the parents/carers of young people receiving primary care support after CAMHS and to identify barriers and facilitators to accessing primary care. Design and setting Qualitative study with young people and parents in two English counties: London and West Midlands. Method Narrative interviews were conducted with 14 young people and 13 parents who had experienced poor continuity of care after reaching CAMHS transition boundary. Data were analysed using reflexive thematic analysis. Results Three themes were identified: unmet mental health needs, disjointed care, and taking responsibility for the young person’s mental health care. Barriers included the perception that GPs couldn’t prescribe certain medication, anxiety caused by the general practice environment, and having to move to a new practice at university. Young people’s positive experiences were more likely to include having a long-term relationship with their GP and finding that their GP made time to understand their needs and experiences. Conclusion GPs could help to meet the unmet needs of young people unable to access specialist mental health services after leaving CAMHS. There is a need for comprehensive handover of care from CAMHS to GPs, which could include a joint meeting with the young person and a member of the CAMHS team. Future research should focus on interventions which improve continuity of care for young people after leaving CAMHS, and collaborative working across community mental health services

An ‘attractive alternative way of wielding power’? : Revealing hidden gender ideologies in the portrayal of Heads of State during the Covid-19 pandemic

This paper explores the gendered discourses of the – seemingly favourable – media coverage that certain Heads of State received for their handling of the COVID-19 pandemic. Looking at media reports published in different English-speaking outlets in the US, the UK, India, Bangladesh, Singapore, New Zealand, Australia, and Ireland, and using multimodal feminist critical discourse analysis, we identify and describe some of the strategies that on the surface appear to challenge hegemonic – and largely masculine – discourses of leadership. Upon closer scrutiny, these superficially complimentary reports rather reinforce and naturalise discriminatory gender ideologies, and, as we demonstrate, they do so to different degrees along a continuum of essentialising, contextualising, and problematising. We critically discuss the discursive and visual processes involved and show that complimenting these leaders on their performance compares them against a masculine norm to construct their leadership as ‘alternative’, exceptional, and hence marked. This gendered portrayal of political leadership in times of crisis illustrates how the discursive construction of identities, responsibilities, and relationships during Covid-19 largely hinges on power relations and political ideologies that systematically disadvantage and undermine women. The purportedly positive form in which this occurs makes it particularly difficult to challenge and subvert these discriminatory discourses and their underlying gendered ideologies