Seldom Heard Voices - Empowering Maternity Services in Wales.

Seldom-heard groups refer to individuals whose voices are often marginalised, underrepresented, or not adequately considered in the digital design process. This case study aims to demonstrate the benefits of taking a user-centred design (UCD) approach to implementing a digital solution for Maternity Services in Wales. Semi-structured interviews were conducted to understand the needs of women and birthing people from seldom-heard groups. The research insights were used to inform the design of a service pattern that could be delivered before and after each maternity appointment. The research shows opportunities to improve the experience for women and birthing people and reduce their anxieties by creating a reliable, accessible digital maternity record that will empower them to make evidence-based decisions. By taking a user-centred design approach and centering the unique needs of those facing the greatest health disparities, Maternity Services' digital transformation aims to positively impact the health and well-being of women and birthing people in Wales.

Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia.

BACKGROUND: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over-reliance on family members as proxies and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. OBJECTIVE: This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. DESIGN: Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. PARTICIPANTS: Nine people living with dementia and five family members participated in this study. RESULTS: Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. CONCLUSIONS: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.

Optimizing a digital intervention for managing blood pressure in stroke patients using a diverse sample: Integrating the person-based approach and patient and public involvement.

BACKGROUND: Having a stroke or transient ischaemic attack increases the risk of a subsequent one, especially with high blood pressure (BP). Home-based BP management can be effective at maintaining optimal BP. OBJECTIVE: To describe the optimization of a digital intervention for stroke patients and the value of participant diversity, using the person-based approach (PBA) and integral patient and public involvement (PPI). SETTING AND PARTICIPANTS: Stroke patients recruited from primary care and community settings, and health-care professionals in primary care, in England and Ireland. DESIGN: Three linked qualitative studies conducted iteratively to develop an intervention using the PBA, with integral PPI. INTERVENTION: The BP: Together intervention, adapted from existing BP self-monitoring interventions, is delivered via mobile phone or web interface to support self-monitoring of BP at home. It alerts patients and their clinicians when a change in antihypertensive medication is needed. FINDINGS: Feedback from a diverse range of participants identified potential barriers, which were addressed to improve the intervention accessibility, feasibility and persuasiveness. Easy-to-read materials were developed to improve usability for patients with aphasia and lower literacy. The importance of including family members who support patient care was also highlighted. Feedback messages regarding medication change were refined to ensure usefulness for patients and clinicians. DISCUSSION: Input from PPI alongside qualitative research with a diverse study sample allowed the creation of a simple and equitable BP management intervention for stroke patients. PATIENT INVOLVEMENT: Two PPI co-investigators contributed to design, conduct of study, data interpretation and manuscript preparation; community PPI sessions informed early planning. Study participants were stroke patients and family members.

Do we all agree what "good health care" looks like? Views from those who are "seldom heard" in health research, policy and service improvement.

CONTEXT: The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among "seldom heard" groups differ from mainstream views and, if so, how might we understand these differences? DESIGN: Focus groups were recruited with the help of our study patient representatives. Participants discussed and prioritized a set of eight "core components" of good care. We recorded and transcribed the data for thematic analysis. SETTING AND PARTICIPANTS: We recruited people who are seldom heard in health and policy research for separate focus group discussions (one each with illegal drug users, Irish Travellers, migrant workers, young men and learning disabled people). We also ran a reference group of educated, older adults and an online group with people with long-term conditions. RESULTS: There were few differences in what participants thought was important in health care but considerable differences in their expectations that they might personally receive good care. Differences related to participants' previous experiences. The drug users group reported particularly poor experiences and low expectations of good care. DISCUSSION: Differences in what is regarded as an entitlement or privilege in health care underline the persistence of structural and relational differences in how services are experienced. While we can be reassured that core aspects of care are similarly prioritized across different patient groups, including those who are seldom heard, a more intractable challenge remains: how to provide equitable health care for marginalized groups in an unequal society.