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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Objectives: Despite high levels of mental ill‐health amongst young people (aged 15–30), this group demonstrates low help‐seeking and high drop‐out from mental health services (MHS). Whilst shared decision‐making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co‐design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth‐focused form of highly personalised and measurement‐based care, is designed to promote shared decision‐making between young people and clinical service providers. Methods: We conducted workshops with 24 young people (16–31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher. Results: Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self‐blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement‐based care was seen as an important method of improving shared decision‐making between young people and health professionals; however, to facilitate shared decision‐making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences. Conclusions: These findings will inform the delivery of the further development and implementation of a youth‐specific clinical education and participant information programme for the BMC Youth Model. Patient or Public Contribution: Workshops were facilitated by researchers with lived expertise in mental ill‐health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper. [ABSTRACT FROM AUTHOR]

Background: The aim of many interventions used by speech and language therapists (SLTs) is to change behaviours related to communication and interaction. Parent‐led language interventions for children in the early years (0–5 years) rely on SLTs supporting parents to change their behaviour in child‐focused interactions to effect a change in the child's communication. Therapeutic techniques used by SLTs in parent‐led language interventions are largely underspecified, impacting on intervention reporting, replication, trialling and development. The Behaviour Change Technique Taxonomy Version 1 (BCTTv1) offers a method of describing intervention techniques developed for use in public health interventions, but with several examples of its application to speech and language interventions. Aims: To identify behaviour change techniques (BCTs) from the BCTTv1 occurring in parent‐led language interventions for children in the early years. Methods & Procedures: A literature search identified relevant descriptions of parent‐led language interventions. These were coded using the BCTTv1. A reliability check was carried out on 10% of the descriptions. To confirm the use of identified BCTs in clinical practice, results of the literature search were triangulated with an online survey of SLTs, and observations of SLTs delivering parent‐led language intervention. Outcomes & Results: A total of 84 papers containing descriptions of 45 interventions were coded; 62 SLTs responded to the survey and three SLTs were observed delivering parent‐led language intervention. A total of 24 BCTs were identified in the literature search, replicated in the observations and verified by SLTs in the survey. BCTs were identified at two levels: Level 1 SLT implemented to change parent interactive behaviour; and Level 2 parent implemented to change child communicative behaviour. Conclusions & Implications: The BCTTv1 is a useful starting place for describing parent‐led language interventions. With some additions and adjustments, BCTs identified in this study were immediately recognized by practitioners and can easily be adopted into practice. WHAT THIS PAPER ADDS: What is already known on this subject: Techniques used in SLT interventions are often not clearly described. The BCTTv1 has been used to clarify technique descriptions with success in a small number of SLT disciplines, but not yet in parent‐led language interventions for preschoola children. What this paper adds to the existing knowledge: This paper constitutes the first research into quantifying the techniques used in parent‐led language interventions using the BCTTv1. What are the potential or actual clinical implications of this work?: This paper provides a clear list of techniques used by SLTs implementing interventions for preschool children, which can be immediately adopted and used in practice. It also highlights potential adjustments and gaps in the BCTTv1 in relation to SLT which can contribute to future iterations. [ABSTRACT FROM AUTHOR]

Background: Many speech sound disorder (SSD) interventions with a long‐term evidence base are 'new' to clinical practice, and the role of services in supporting or constraining capacity for practice change is underexplored. Innovations from implementation science may offer solutions to this research–practice gap but have not previously been applied to SSD. Aim: To explain variation in speech and language therapy service capacity to implement new SSD interventions. Methods & Procedures: We conducted an intensive, case‐based qualitative study with 42 speech and language therapists (SLTs) in three NHS services (n = 39) and private practice (n = 3) in Scotland. We explored therapists' diverse experiences of SSD practice change through individual interviews (n = 28) or self‐generated paired (n = 2) or focus groups (n = 3). A theoretical framework (Normalization Process Theory) helped us understand how the service context contributed to the way therapists engaged with different practice changes. Outcomes & Results: We identified six types ('cases') of practice change, two of which involved the new SSD interventions. We focus on these two cases ('Transforming' and 'Venturing') and use Normalization Process Theory's Cognitive participation construct to explain implementation (or not) of new SSD interventions in routine practice. Therapists were becoming aware of the new interventions through knowledge brokers, professional networks and an intervention database. In the Transforming case, new SSD interventions for selected children were becoming part of local routine practice. Transforming was the result of a favourable service structure, a sustained and supported 'push' that made implementation of the new interventions a service priority, and considerable collective time to think about doing it. 'Venturing' happened where the new SSD interventions were not a service priority. It involved individual or informal groups of therapists trying out or using one or more of the new interventions with selected children within the constraints of their service context. Conclusions & implications: New, evidence‐based SSD interventions may be challenging to implement in routine practice because they have in common a need for therapists who understand applied linguistics and can be flexible with service delivery. Appreciating what it really takes to do routine intervention differently is vital for managers and services who have to make decisions about priorities for implementation, along with realistic plans for resourcing and supporting it. WHAT THIS PAPER ADDS: What is already known on the subject: Many SSD interventions have an evidence base but are not widely adopted into routine clinical practice. Addressing this is not just about individual therapists or education/training, as workplace pressures and service delivery models make it difficult to change practice. What this paper adds to the existing knowledge: This paper applies innovations from implementation science to help explain how what is going on in services can support or constrain capacity for implementing evidence‐based SSD interventions. What are the potential or actual clinical implications of this work?: Service managers and therapists will have a clearer idea of the time and support they may realistically have to invest for new SSD interventions to be used routinely. [ABSTRACT FROM AUTHOR]

Introduction and Aims: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. Methods and Analysis: This is the initial experience gathering and priority identification stage of an experience‐based co‐design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. Results: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient‐provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). Conclusions: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). Patient or Public Contribution: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co‐designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.). [ABSTRACT FROM AUTHOR]

Background: This study investigated healthcare access and quality for people who are transgender and gender‐diverse (PTGD) in Saskatchewan (SK), Canada, to inform a larger project that was piloting two peer health navigators for PTGD. Methods: Two online focus groups were held. Nineteen participants were recruited to represent a broad range in age, gender and location in SK. Transcripts of the focus groups were analyzed using a thematic approach. Results: The core theme that was identified was participants' desire for culturally safe healthcare. This core theme had two component themes: (1) systemic healthcare factors and (2) individual healthcare provider (HCP) factors. The healthcare system primarily acted as a barrier to culturally safe healthcare. HCPs could be either barriers or facilitators of culturally safe care; however, negative experiences outweighed positive ones. Conclusions: PTGD in SK face discrimination, with delays and barriers to care at all levels of the healthcare system. Peer health navigators can address some of these discrepancies; however, greater support is required for PTGD to be able to access culturally safe healthcare. Patient or Public Contribution: People with lived experience/PTGD were involved in all stages of this project. They were included on the team as community researchers and co‐developed the research project, conducted the focus groups, participated in the analyses and are co‐authors. As well, both navigators and all the participants in the focus groups were also PTGD. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one‐time honorarium, salary) and amount. Further, broad‐based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. Methods: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self‐identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open‐text comments in addition to menu‐based and scaled response options. Basic frequencies were performed for all questions and open‐text comments were analyzed through inductive qualitative content analysis. Results: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open‐text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. Conclusions: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. Patient Contribution: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co‐authors of this manuscript. The survey was co‐designed and pilot tested with patient partners and survey participants were patient partners. [ABSTRACT FROM AUTHOR]

Background: Persistent somatic symptoms (PSS) frequently remain under‐treated in health care settings. Evidence‐based services that lead affected individuals to early guideline‐based care are currently missing. This study aimed to identify the needs of those affected concerning an internet‐based guide. The second aim was to evaluate public and patient involvement (PPI). Methods: Participants experiencing PSS for at least 6 months were recruited via hospitals, psychotherapeutic practices and self‐help organizations. Qualitative data were gathered via ideation discussions and prioritization tasks. Thematic analysis was conducted to gain insight on the needs of people with lived experiences. PPI was quantitatively evaluated with the Public and Patient Engagement Evaluation Tool. Results: A total of 12 individuals participated (eight females, ages 22–66 years, duration of symptoms 1–43 years). Participants wanted to feel more supported, validated, in control and engaged with managing their health. Content‐related preferences included education, self‐help, social support and contact addresses. The majority of participants (>90%) experienced their involvement as worthwhile. Conclusions: To the best of our knowledge, this is one of the first studies describing PPI in intervention development for PSS. The involvement was perceived as a valuable contribution to the development process. Patient or Public Contribution: Adults with lived experiences were involved at the level of collaboration through the establishment of a participatory research team (PRT) and at the level of consultation through a workshop series, including one of the coauthors. They were involved in developing and validating intervention material and checking data interpretation. [ABSTRACT FROM AUTHOR]