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Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice has the potential to align with the directive to reduce inequalities by United Nations Sustainable Development Goal 10. Telepractice additionally addresses a national digital health strategic plan for accessible digitally enabled models of care. To plan improvements, it is essential to understand the experience of telepractice for people with disability, which may be achieved through an approach such as journey mapping. The current article provides both a disability‐specific case study and a methodological guide for the inclusion of customers and clinicians in the meaningful redevelopment of services. The Perth, Australia‐based case study aimed to gain insights into the experience of telepractice for people with disability. The methodological aim describes using co‐design to produce a journey map in collaboration with customers and clinicians, for potential replication in a wide range of health and social care contexts. Method: Interview transcripts gathered from a cohort of customer participants (n = 17) were used to inform the journey map. A group of customers (n = 5) and clinicians plus one manager (n = 5) distributed the findings onto a customer experience journey map during a co‐design workshop. The journey map describes the emotional experience and actions taken, along five phases of a timeline through telepractice service interactions: (1) before, (2) selecting telepractice, (3) telepractice preparation, (4) during telepractice sessions and (5) after. Results: A journey map visualisation of customer experiences was produced that identified strengths of telepractice service delivery (flexibility) while noting challenges (with technology) as opportunities for improvement. The consensus of participants was the desire to have access to telepractice currently and in the future, in addition to in‐person delivery. Conclusion: These findings are valuable in the context of advocating for the incorporation of customers and clinicians through co‐design workshops in the content analysis and creation of a journey map that is representative of the lived experience of accessing telepractice services. Patient or Public Contribution: The paper forms part of a larger co‐design process that included customer participants throughout the design and planning of the project, inclusion of a peer researcher and the co‐designers in the workshops, journey map and this article production. [ABSTRACT FROM AUTHOR]

Background: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim: This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method: We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results: Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion: We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution: This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study. [ABSTRACT FROM AUTHOR]

Background: Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim: This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion: Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Background: Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective: This study explored participants' experiences of PPI, following attending a 'consensus conference', during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design: Qualitative, semi‐structured interview study. Setting and Participants: Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results: Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) 'We are all in the same boat' and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion: This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement. [ABSTRACT FROM AUTHOR]

Introduction: Poor medical information transfer across healthcare visits and providers poses a potential threat to patient safety. Patient‐held health records (PHRs) may be used to facilitate informational continuity, handover communication and patient self‐management. However, there are conflicting opinions on the effectiveness of PHRs, other than in maternal and child care. Moreover, the experiences of users of PHRs in low‐ and middle‐income countries are critical in policy decisions but have rarely been researched. Aim: This study aimed to explore similarities and differences in the perspectives of patients, carers and healthcare providers (HCPs) on the current PHRs for diabetes and hypertension in Kerala. Methods: A qualitative design was used comprising semistructured interviews with patients with diabetes/hypertension (n = 20), carers (n = 15) and HCPs (n = 17) in Kerala, India. Data were analysed using thematic analysis. Results: Themes generated regarding the experiences with PHRs from each user group were compared and contrasted. The themes that arose were organized under three headings: use of PHRs in everyday practice; the perceived value of PHR and where practice and value conflict. We found that in the use of PHRs in everyday practice, multiple PHRs posed challenges for patients carrying records and for HCPs locating relevant information. Most carers carried all patients' past PHRs, while patients made decisions on which PHR to take along based on the purpose of the healthcare visit. HCPs appreciated having PHRs but documented limited details in them. The perceived value of PHRs by each group for themselves was different. While HCPs placed value on PHRs for enabling better clinical decision‐making, preventing errors and patient safety, patients perceived them as transactional tools for diabetes and hypertension medications; carers highlighted their value during emergencies. Conclusion: Our findings suggest that users find a variety of values for PHRs. However, these perceived values are different for each user group, suggesting minimal functioning of PHRs for informational continuity, handover communication and self‐management. Patient and Public Involvement: Patients and carers were involved during the pilot testing of topic guides, consent and study information sheets. Patients and carers gave their feedback on the materials to ensure clarity and appropriateness within the context. [ABSTRACT FROM AUTHOR]

Introduction: A growing body of research is examining how healthcare systems are responding to the increasing numbers of migrants and the resulting superdiversity of patients. The aim of this article is to identify and explain communication barriers in the provision of healthcare to Ukrainian war refugees in the Czech Republic from the perspectives of healthcare professionals and intercultural mediators. Methods: The exploratory case study is based on a qualitative analysis of semi‐structured interviews with frontline health professionals: 20 with doctors and 10 with nurses. The second source of data is two focus groups aimed at capturing communication problems from the perspective of intercultural mediators who accompany refugees to health facilities. The interview transcripts and FGs were analysed using six‐stage thematic coding. Results: The survey identified five main themes related to barriers to communication: (1) language barriers and interpreting, (2) cultural barriers, (3) differing expectations of health and the healthcare systems in the Czech Republic and Ukraine, (4) prejudices and negative attitudes and unethical behaviour towards refugees and migrants and (5) lack of awareness of patient rights. Conclusions: The arrival of large numbers of migrants has highlighted deficiencies in the system that may affect other vulnerable groups and the general population. These include the lack of general communication skills and legal awareness among many health professionals, which are barriers to the development of patient‐centred care. The involvement of intercultural mediators fundamentally improves communication between health professionals and (not only) migrant patients. Nevertheless, it is necessary to legally anchor and define the position of intercultural mediators within the healthcare system. Patient or Public Contribution: Collaboration with intercultural mediators who interpreted the extensive experiences of Ukrainian refugee patients and also have personal experience as migrant or migrant‐origin patients contributed to shaping research questions, facilitating study participation and enriching evidence interpretation. Researchers with multicultural backgrounds and experience with working with people from refugee backgrounds were involved in the study design and analysis. [ABSTRACT FROM AUTHOR]

Introduction: Qualitative research on the perceptions of healthcare professionals involved in cancer care about their respective roles in the patient care pathway is limited. Therefore, the aim of this qualitative study was to document these perceptions. Methods: A multidisciplinary team that included patient researchers constructed a semi‐structured interview guide on the perceptions of the colorectal cancer care pathway by professionals. Interviews were conducted with healthcare professionals from two French hospitals that manage patients with colorectal cancer. Then, the interviews were fully transcribed and analysed by the whole multidisciplinary team. Results: Thirteen healthcare professionals were interviewed (six nurses, four physicians, one psychologist, one social worker and one secretary). They described the colorectal care pathway using a great lexical diversity and listed a significant number of professionals as taking part in this pathway. Among the people mentioned were healthcare professionals working inside and outside the hospital, family members and non‐conventional medicine practitioners. However, they did not spontaneously mention the patient. Their views on the role of the referring physician, the general practitioner and the patient were further explored. The interviews highlighted the coordination difficulties among the various professionals, particularly between general practitioners and hospital teams. These data provided interesting elements for developing a tool to help coordination among professionals. Conclusions: This preliminary study, with its participatory design, brings interesting elements of reflection on the care pathway for patients with colorectal cancer. It will continue through the creation of a larger participatory project. Patient or Public Contribution: Patient partners were included in all steps of this study. This transdisciplinary project was coordinated by a group composed of three patient partners, two healthcare professionals and two humanities and social sciences researchers. Their knowledge of the patient's perspective on the care pathway enriched discussions from the study design to results analysis. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [ABSTRACT FROM AUTHOR]

Introduction: Globally, there is an increasing demand for quality medical rehabilitation services. This is the first article of a two‐part series showing the findings from the Rehabilitation Choices study in which the main aim was to understand the current landscape of decision‐making, enablers and barriers to access appropriate rehabilitation services in the Australian setting. In Part 1, these insights were sought from a healthcare professionals' perspective. Methods: This was an exploratory, qualitative study, using semi‐structured interviews with a discussion guide that was codesigned together with rehabilitation clinicians and rehabilitation researchers. Themes and sub‐themes were identified using an inductive approach. Results: We interviewed a heterogeneous group of 31 professionals who are involved in making referral decisions about rehabilitation or who design and deliver rehabilitation programs, including specialist rehabilitation physicians and other medical doctors across in‐patient, outpatient, and primary care settings, allied health professionals, rehabilitation service managers, nurses, multicultural health liaison officers and rehabilitation research scientists. Three key themes relevant to barriers and enablers to service access were identified from the data: defining rehabilitation; a lack of timely access to patient and rehabilitation service data; and patient diversity not expected by the system. Conclusions: Healthcare professionals who make decisions about rehabilitation referrals and services feel that it was necessary for them to keep up to date with information relating to rehabilitation services. There was some concern regarding what rehabilitation constituted and what services were available for different clinical indications. They also indicated that current systems did not consider diversity among patients' needs and goals. Their recommendations included the need for better communication pathways, improved referral systems and resources that could help provide best practice of rehabilitative care in the future. Patient or Public Contribution: Three study team members had a lived experience of rehabilitation as a patient or carer, and previous experience participating in qualitative research. They worked with the study team to codesign the recruitment strategy, participant‐facing communications, the interview discussion guide, and the approach to the conduct of activities with participants and in the interpretation and contextualization of findings and all were involved in writing this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: This study sought to explore the meaning of the recovery process and its stages from the perspective of people attending a mental health day hospital. Methods: A descriptive exploratory qualitative study was carried out. Semi‐structured interviews were conducted with people attending a mental health day hospital. The data were analysed deductively by means of content analysis. Results: The participants described the recovery process as a process based on three pillars; the attitude towards recovery, hardship, and the effort required throughout the process. Regarding the stages of recovery, for the participants in the first stage of the process (Moratorium), the search for hope was the most important element. In the second stage (Awareness), the reestablishment of their identity, through the acceptance of the consequences derived from the mental health problem, together with being able to feel full and fulfilled, were the most outstanding elements. In the third stage (Preparation), participants highlighted the search for meaning in life, facing their fears and the process with an open mind. Finally, the last two stages (Rebuilding and Growth) were related to taking responsibility and empowerment for recovery. Conclusions: The results of this study provide insight into the perception of the recovery process and its stages in people attending a mental health day hospital. These findings may contribute to aligning the nurse–patient perspective, helping nurses to understand the key elements of patients according to their stage of recovery, and thus be able to subsequently individualise interventions. Patient and Public Contribution: This study was based on interviews with 15 patients receiving treatment at an adult mental health day hospital. This study would not have been possible without their participation. [ABSTRACT FROM AUTHOR]

Introduction: People should have access to healthcare services that are effective, safe and secure, patient‐centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction. Methods: We conducted in‐depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3–30 years), and severity. Results: Four main themes were developed: (1) 'Nonexistent services' cover patients' experience that healthcare services had nothing to offer them after receiving their ME/CFS‐diagnosis. (2) 'Nonpersonalised services' documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient's need. (3) 'Slow services' address patients' experience of getting services too late (or too little) to be useful. (4) 'Wrong services' comprise patients' experiences of being offered and/or 'forced' to accept services that they felt were inappropriate for their health problems. Conclusions: Providers' lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers' belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users' unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers' perspectives on caregiving and the barriers they experience for providing high‐quality care. Patient or Public Contribution: The ME‐patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: More than 90% of deaf children are born to hearing families who know little about deafness. Benefits from hearing screening at birth are often lost, as families find little information about pathways for deaf children but are key to ensuring deaf children receive relevant language and communication support. Systems surrounding deaf children and family members are crucial for children's health and social development. Experiences of hearing parents raising deaf children and understanding factors that influence families' experience of navigating pathways for deaf children through health and education services are currently underreported. Methods: An exploratory study was conducted in Wales, UK. Twenty participants were interviewed, including 10 hearing parents of deaf children and 10 people who work with deaf children using semistructured interviews. Bronfenbrenner's ecological systems theory was used as a lens to explore the micro‐, meso‐, exo‐, macro‐ and chronosystems that surround children and families. This study explores potential supports and barriers in those systems. Findings: Findings are reported under two broad headings: enablers and barriers. Under enablers, it was found that provision of resources, supporting people and knowledge were key factors. Under barriers, a lack of knowledge, lack of provision and battling services and attitudes were key issues that need addressing. Conclusion: Hearing parents of deaf children in Wales, UK reported experiencing a range of enablers and barriers that impact upon their experiences of raising a deaf child. Further provision is needed by policymakers and governments to recognise support needs to improve the outcomes for deaf children. Patient or Public Contribution: This project was developed from initial discussions with the stakeholder reference group and progressed with the group's deaf panel and hearing parents with deaf children. The project's steering group was involved in study design, recruitment and continuous feedback on all stages of the research process. [ABSTRACT FROM AUTHOR]

Background: Person‐centred goal planning is increasingly being incorporated into healthcare interventions. People experiencing severe and persistent mental illnesses (SPMIs) have high levels of co‐occurring health conditions, reducing their life expectancy when compared with the general population. As medications are commonly used in the treatment of SPMIs, community pharmacists are well‐placed to support the health and wellbeing of this population. Objectives: To examine pharmacists' and service users' experiences of goal planning as a component of a community pharmacy‐based health intervention for people experiencing SPMIs (PharMIbridge intervention). Methods: This study utilised a qualitative exploratory approach with an interpretive description method. Semistructured interviews were undertaken with community pharmacists (n = 16) and service user participants (n = 26) who had participated in pharmacist support services for people experiencing SPMIs (PharMIbridge intervention). Results: Four themes relating to goal planning were identified. First, goal planning provided purpose and motivation for participation in the intervention. Planning realistic goals was important but often challenging. Both pharmacists and service users highlighted the relational aspects of goal planning and how strong relationships supported positive behaviour change and outcomes. Finally, individualised and flexible approaches were important aspects of the intervention, ensuring goals were meaningful to service users. Conclusions: The findings from this study identified positive outcomes from the inclusion of goal‐planning processes in a community pharmacy‐based health intervention. Further research regarding tools, strategies or training that could support future goal‐planning interventions in primary healthcare is needed. Patient or Public Contribution: The PharMIbridge randomised controlled trial research team included lived experience members and was overseen by an expert panel that included members with a lived experience of mental illness and representatives from key organisations. The training provided to pharmacists was co‐designed and co‐delivered by the researchers and lived experience representatives, and pharmacists were supported by lived experience mentors. Service user participants were invited to participate in the interviews through a number of pathways (e.g., at the completion of the intervention, flyers). Those interested were provided with the full study participant information and provided with a $30 gift voucher at the conclusion of the interview. [ABSTRACT FROM AUTHOR]

To elicit patients' views on whether they could contribute to improvements in their care by carrying their own health information to clinician encounters; and to consider the implications for the development of a patient-held health file (PHF). Increasing rates of chronic disease lead to health care being delivered by multiple care providers often at distributed geographic locations. As a way of increasing the availability of patient information to care providers our project will trial a PHF. Patients carry these files to doctors' appointments where clinicians record data for other doctors or the patient. Increasing the availability of patient information is anticipated to enhance the safety and quality of care delivery and improve health outcomes. Qualitative semi-structured interviews were conducted with 10 patients. Participants were evenly distributed in terms of gender, aged 60 years or greater and visited at least two specialists and one general practitioner. In this exploratory study, patients who were currently active in decision making about their own health already recorded some health information. They were receptive to carrying their information and thought they should take some responsibility for their health. Patients who were more passive in making decisions about their health did not perceive a need to carry their own information and felt that their doctors communicated adequately. Patient-held health files provide an opportunity for patients to access their health information. Such files have the potential to improve health outcomes for patients who adopt both active and passive roles in relation to their own health and engaging with their health information. [ABSTRACT FROM AUTHOR]

Introduction: Patients' and companions' participation in healthcare could help prevent adverse events, which are a significant cause of disease and disability. Before designing interventions to increase participation, it is first necessary to identify attitudes to patient safety. This study aimed to explore patients' and companions' perceptions, attitudes and experiences of patient safety, taking into account contextual factors, such as cultural background, which are not usually captured in the literature. Methods: We conducted a qualitative study with a theoretical sampling of 13 inpatients and 3 companions in a university hospital in Barcelona, Spain. Information was obtained from individual and triangular interviews. A descriptive thematic content analysis was conducted by four analysts and a consensus was reached within the research team on the key categories that were identified. We also conducted a card‐sorting exercise. Results: All informants emphasized the role of good communication with health professionals, a calm environment and the need for patient education. Discursive positions differed by cultural background. Informants from a Pakistani–Bangladeshi background emphasized language barriers, while those from European and Latin‐American backgrounds stressed health professionals' lack of time and the need for more interdisciplinary teamwork. The card‐sorting exercise identified several opportunities to enhance participation: checking patient identification and medication dispensation, and maintaining personal and environmental hygiene. Conclusion: This exploration of informants' discourse on patient safety identified a wide variety of categories not usually considered from institutional perspectives. The findings of this study could enrich interventions in areas with diverse cultural backgrounds, as well as current frameworks based exclusively on institutional perspectives. Patient or Public Contribution: The results of the study were communicated to patients and accompanying persons via telephone or email. Similarly, a focus group was held with a patient forum to comment on the results. In the design of subsequent interventions to improve patient safety at the hospital, the proposals of patients and companions for their participation will be included together with healthcare professionals' opinions. [ABSTRACT FROM AUTHOR]

Background: Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. Objectives: The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. Methods: Within an exploratory sequential mixed‐method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. Results: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. Conclusion: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long‐term, effective collaboration and added value for practice and research. Patient or Public Contribution: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text. [ABSTRACT FROM AUTHOR]

Background: Human papillomavirus (HPV) self‐sampling has shown to be acceptable and feasible across cultures and effective in reaching women who do not participate in regular cervical cancer screening. However, most of these studies have included younger women. There is a lack of knowledge of how older women reason about HPV self‐sampling. Objective: The aim of this study was to describe how women (>60 years old) experience the offering of self‐sampling of HPV, compared to having a sample collected by a healthcare professional. Design and Participants: The study had a qualitative explorative design. Four focus group discussions were conducted with women 60–69 years old (n = 22). Data were analysed using principles of interpretive description. Results: Five themes were identified: self‐sampling—convenient and without pain, lack of knowledge, worries related to HPV self‐sampling, need for information and taking a societal perspective. Conclusion: Women aged >60 years found that HPV self‐sampling was convenient and easy to perform. Further, they stressed the importance of being able to remain in the screening programme in advanced age and that self‐sampling could be a possible solution. This study also revealed a lack of knowledge among women in this age group regarding HPV infection, how the disease is transmitted and its relation to cervical cancer. Public Contribution: Women who had performed HPV self‐sampling participated in the focus group discussion. [ABSTRACT FROM AUTHOR]

Introduction: Antimicrobial resistance is one of the biggest threats facing global humanity. In 2014, Public Health England (now the UK Health Security Agency) launched the Antibiotic Guardian (AG) campaign as a national health promotion initiative to increase public and health professionals' commitment to reducing the threat of antibiotic resistance (ABR). The aim of this research study was to gain a snapshot of public AG attitudes towards antibiotic use, the AG campaign and illness postpledge. Methodology: This research used an exploratory study design using thematic and framework analysis of semistructured, in‐depth interviews. A purposive convenience sampling strategy was used to recruit 10 participants; adults in the general population who had registered with and chosen an AG pledge via the AG online platform during November 2020 were eligible for inclusion. Interviews were conducted via Zoom. Results: Six main themes were identified: campaign awareness, motivators to pledge (uncertainty about the future of ABR, personal gratification, personal responsibility, moral obligation and COVID‐19), perceptions of personal responsibility (and patient perspectives of moral obligation in clinicians), the impact of the campaign and campaign promotion. Pledging appeared to solidify existing perceptions AGs held. Behavioural motivations for responsible antibiotic behaviours stemmed from perceptions of personal responsibility, moral obligation and concerns about ABR. AGs attributed responsibility to variable patterns in overprescribing. Perceptions towards COVID‐19, coinciding with the previously established study period, appeared mixed. AGs were keen to promote responsible perceptions in relation to antibiotics, resistance and the AG campaign. However, poor social acceptability of ABR concern was raised as a barrier to campaign promotion. Discussion: The AGs' longstanding commitment to antimicrobial resistance demonstrates the importance of a pre‐existing interest in the public's self‐reported judicious behaviours and decision to pledge to an ABR‐focused campaign. Presenting the local and global threat to human mortality and morbidity in a more relatable format in public messaging should be considered in future strategies promoting ABR awareness and shifts in public perceptions. More frequent messaging to existing AGs is further recommended to propagate positive behaviour change among a wider audience. Patient or Public Contribution: This study was based on interviews with adult members of the public who had pledged to be AGs via the website www.AntibioticGuardian.com. Interviews were based on the public's perceptions of the AG campaign, antibiotic use and ABR. [ABSTRACT FROM AUTHOR]

Introduction: Covid‐19 expanded the use of remote working to engage with public contributors in health and social care research. These changes have the potential to limit the ability to participate in patient and public involvement and engagement (PPIE) for some public contributors. It is therefore important to understand public contributors' preferences, so that remote working can be organized in an optimal way to encourage rather than discourage participation. Methods: We use an economic preference elicitation tool, a discrete choice experiment (DCE), via an online survey, to estimate public contributors' preferences for and trade‐offs between different features of remote meetings. The features were informed by previous research to include aspects of remote meetings that were relevant to public contributors and amenable to change by PPIE organizers. Results: We found that public contributors are more likely to participate in a PPIE project involving remote meetings if they are given feedback about participation; allowed to switch their camera off during meetings and step away if/when needed; were under 2.5 h long; organized during working hours, and are chaired by a moderator who can ensure that everyone contributes. Different combinations of these features can cause estimated project participation to range from 23% to 94%. When planning PPIE and engaging public contributors, we suggest that resources are focused on training moderators and ensuring public contributors receive meeting feedback. Discussion and Conclusion: Project resources should be allocated to maximize project participation. We provide recommendations for those who work in public involvement and organize meetings on how resources, such as time and financial support, should be allocated. These are based on the preferences of existing public contributors who have been involved in health and social care research. Patient or Public Contribution: We had a public contributor (Naheed Tahir) as a funded coapplicant on the UKRI ESRC application and involved members of the North West Coast Applied Research Collaboration (NWC ARC) Public Advisor Forum at every stage of the project. The survey design was informed from three focus groups held with NWC ARC public contributors. The survey was further edited and improved based on the results of six one‐to‐one meetings with public contributors. [ABSTRACT FROM AUTHOR]

Background: Specific routines such as the development of personal communication plans can improve the interaction between people with communication disorders and healthcare staff. Objective: This pilot study explores a model for implementing communication routines including personal communication plans in long‐term residential care. Design, Setting and Participants: This multiple case study includes two residential care facilities that differ in size and the number of languages spoken. Intervention or main variables studied implementation strategies involved workshops, individual coaching and follow‐up visits. Main outcome measure implementation was assessed using goal attainment measurements, and the staff's views about facilitators and barriers to implementation were explored through structured interviews using the Theoretical Domains Framework. Results: The overall implementation success rate for the facilities was moderate, and one of the facilities showed promising results related to personal communication plans. Both facilities experienced barriers to implementation, including management problems and a lack of reminders. However, the two facilities seem to have different motivations for change. Discussion and Conclusions: Regardless of the features of the facility, successful implementation requires stable and committed leadership. Moreover, experiences with language diversity may motivate staff to implement communication routines. Patient or Public Contribution: The content of the implementation model used (i.e., choice of specific routines and implementation strategies) was coproduced by staff, managers and the researchers involved in this project. The staff and managers were responsible for the implementation of the new routines under the supervision of the researchers. [ABSTRACT FROM AUTHOR]

Background: Involvement of end‐users in research can enhance its quality, relevance, credibility and legitimacy; however, the processes through which these changes occur are unclear. Our aim was to explore a coproduction research team's experiences of their involvement in research about young people with type 1 diabetes mellitus (T1DM). Methods: Semi‐structured interviews conducted with two young people with T1DM, two parents, one diabetes educator, one endocrinologist‐scientist and one research‐engineer explored experiences of coproduction research and its impact on both the research and the participants. Drawing on grounded theory, we undertook inductive analysis and storyline mapping to develop a theorized framework of mechanisms supporting the process of coproduction in T1DM research with young people. Findings: The framework involving coproduction partners in research about young people with type 1 diabetes centres on the unique expertize that different team members bring to the research and describes conditions that enable expert contributions through the enactment of a variety of expert roles. The framework also describes outcomes—the impact of the expert contributions on both the research and the team members involved. Conclusion: The findings of this small exploratory study provide a sound foundation to develop further understanding about structures and processes that are integral for the success of coproduction research teams. The framework may provide a guide for researchers planning to incorporate coproduction, on elements that are important for this model of research to succeed. It may also inform coproduction impact assessment research and be used for hypothesis testing and expansion in future studies. [ABSTRACT FROM AUTHOR]

Background: Compromised bone health is often associated with depression and chronic pain. Objective: To examine: (1) the experience of existing depression and chronic nonfracture pain in patients with a fragility fracture; and (2) the effects of the fracture on depression and pain. Design: A phenomenological study guided by Giorgi's analytical procedures. Setting and Participants: Fracture patients who reported taking prescription medication for one or more comorbidities, excluding compromised bone health. Main Variables Studied: Patients were interviewed within 6 weeks of their fracture, and 1 year later. Interview questions addressed the recent fracture and patients' experience with bone health and their other health conditions, such as depression and chronic pain, including the medications taken for these conditions. Results: Twenty‐six patients (5 men, 21 women) aged 45–84 years old with hip (n = 5) and nonhip (n = 21) fractures were recruited. Twenty‐one participants reported depression and/or chronic nonfracture pain, of which seven reported having both depression and chronic pain. Two themes were consistent, based on our analysis: (1) depression and chronic pain overshadowed attention to bone health; and (2) the fracture exacerbated reported experiences of existing depression and chronic pain. Conclusion: Experiences with depression and pain take priority over bone health and may worsen as a result of the fracture. Health care providers treating fragility fractures might ask patients about depression and pain and take appropriate steps to address patients' more general emotional and physical state. Patient Contribution: A patient representative was involved in the study conception, data interpretation and manuscript writing. [ABSTRACT FROM AUTHOR]

Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital. [ABSTRACT FROM AUTHOR]

Background: The introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood. Objective: To explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities. Design: Qualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed. Setting and participants: This study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed. Results: Many experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported. Conclusions: Key differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work. [ABSTRACT FROM AUTHOR]

Background: Stem cell therapy is a novel treatment option for people living with osteoarthritis. Research investigating stem cell therapy for this debilitating condition has predominantly involved the pathogenesis of the cells and efficacy of the treatment. There is little understanding of patients' expectations and experiences of stem cell therapy treatment. Objective: To explore the expectations and experiences of people undergoing stem cell therapy for the treatment of knee osteoarthritis. Design: An exploratory, descriptive, qualitative study using semi‐structured interviews was conducted. Setting and participants: Participants were recruited into two groups: (a) Expectations Group (n = 15); the expectations of stem cell treatment were explored with participants that were yet to commence stem cell therapy. (b) Experiences Group (n = 15); the experiences of stem cell therapy were explored with participants 12 months after their initial stem cell treatment. Transcripts were analysed using thematic analysis to identify themes in both groups. Results: Themes for the Expectations Group were active involvement in the treatment; treatment will improve symptoms; and benefits of treatment outweigh the risks. Themes for the Experiences Group were symptoms of treatment; satisfaction with treatment; and anticipation of further improvement. Discussion and conclusions: The findings are the first qualitative study to represent patients' perspective on expectations and experiences of stem cell therapy for knee osteoarthritis. They provide insight into the potential areas for improvement within this field to aid patients' preparation and approach to the treatment, promoting patient‐centred care. [ABSTRACT FROM AUTHOR]

Background: Dissemination of research findings to past study participants and the community‐at‐large is important. Yet, a standardized process for research dissemination is needed to report results to the community. Objective: We developed a framework and strategies to guide community‐academic partnerships in community‐targeted, dissemination efforts. Methods: From 2017 to 2019, a community‐academic partnership was formed in Nashville, Tennessee, and iteratively developed a framework and strategies for research dissemination using cognitive interviews. A deductive, constant comparative analysis was conducted on interview responses to examine framework and strategy content. Feedback was used to finalize the framework and strategies for the evaluation. Using existing data, the framework's utility was evaluated in seven town hall meetings (n = 117). Bivariate analyses determined its effect on community members' trust and willingness to participate in research using pre‐ and post‐surveys. Evaluation results were used to finalize the framework. Results: The Community‐Engaged Research Dissemination (CERD) framework has two phases. Phase one is a preliminary planning phase with two steps, and phase two is the four‐step dissemination process. There are five standards to be upheld conducting these phases. We provide competencies for each component. Three feasible, culturally adapted strategies were developed as exemplars to disseminate research findings. Using pre‐ and post‐surveys for intervention evaluation, there was a significant difference in trust in medical research and researchers (P =.006) and willingness to participate in research (P =.013). Discussion and Conclusion: The CERD framework can potentially standardize the process and compare the effect of dissemination efforts on the community's trust and willingness to participate in research. [ABSTRACT FROM AUTHOR]

Introduction: There is an extensive literature on public involvement (PI) in research, but this has focused primarily on experiences for researchers and public contributors and factors enabling or restricting successful involvement in specific projects. There has been less consideration of a 'whole system' approach to embedding PI across an organization from governance structures through to research projects. Objective: To investigate how a combination of two theoretical frameworks, one focused on mainstreaming and the other conceptualizing quality, can illuminate the embedding of positive and influential PI throughout a research organization. Methods: The study used data from the evaluation of a large UK research collaboration. Primary data were collected from 131 respondents (including Public Advisers, university, NHS and local government staff) via individual and group interviews/workshops. Secondary sources included monitoring data and internal documents. Findings: CLAHRC‐NWC made real progress in mainstreaming PI. An organizational vision and infrastructure to embed PI at all levels were created, and the number and range of opportunities increased; PI roles became more clearly defined and increasingly public contributors felt able to influence decisions. However, the aspiration to mainstream PI throughout the collaboration was not fully achieved: a lack of staff 'buy‐in' meant that in some areas, it was not experienced as positively or was absent. Conclusion: The two theoretical frameworks brought a novel perspective, facilitating the investigation of the quality of PI in structures and processes across the whole organization. We propose that combining these frameworks can assist the evaluation of PI research. [ABSTRACT FROM AUTHOR]

Background: Service user and carer perspectives on safety issues in mental health services are not well known and may be important in preventing and reducing harm. The development of the Yorkshire Contributory Factors Framework—Mental Health (YCFF‐MH) provides a broad structure within which to explore these perspectives. Objective: To explore what service users of mental health services and their carers consider to be safety issues. Design, setting and participants: Qualitative interviews with 13 service users and 7 carers in the UK. Participants were asked about their experiences and perceptions of safety within mental health services. Perceived safety issues were identified using framework analysis, guided by the YCFF‐MH. Results: Service users and carers identified a broad range of safety issues. These were categorized under 'safety culture' and included psychological concepts of safety and raising concerns; 'social environment' involved threatened violence and sexual abuse; 'individual service user and staff factors' dominated by not being listened to; 'management of staff and staffing levels' resulting in poor continuity of care; and 'service process' typified by difficulty accessing services during a crisis. Several examples of 'active failures' were also described. Discussion and conclusions: Safety issues appear broader than those recorded and reported by health services and inspectorates. Many safety issues have also been identified in other care settings supporting the notion that there are overlaps between service users and carers' perspectives of safety in mental health services and those of users in other settings. Areas for further research are suggested. [ABSTRACT FROM AUTHOR]

Objective: To explore pregnant women's views of participation in a clinical research trial while pregnant. Design: Prospective nested qualitative cohort study embedded within a national, multi‐site randomized controlled trial of a diagnostic test for preeclampsia: Placental Growth Factor. One‐to‐one in‐depth semi‐structured interviews were undertaken with 19 women who had recently participated in the trial at a single recruiting site. The interviews were conducted in private, recorded digitally and transcribed verbatim. Setting: Single tertiary maternity hospital currently recruiting eligible women onto an on‐going randomized controlled trial (NCT 02881073). Participants: Women who had participated in the PARROT Ireland randomized controlled trial during their recent pregnancy. Methods: Thematic analysis was utilized. Each line of the transcribed interviews was coded into a category by two researchers. The resultant categories were reviewed, and those with similarities were pooled allowing the development of themes. Main Outcome Measures: Women's opinions and experience of participation in a randomized controlled trial of an interventional diagnostic test during their pregnancy. Results: Four major themes were identified as follows: (a) Understanding of preeclampsia, (b) Motivators for clinical trial participation, (c) Barriers to decision making and (d) Influence of PARROT Ireland on pregnancy experience. Conclusions: Women are generally interested and positively inclined to participate in research during pregnancy. The potential of risk is an important consideration for eligible pregnant woman. Information and support by both researchers and clinicians are paramount in aiding women's understanding of a research trial. [ABSTRACT FROM AUTHOR]

Background: It has been suggested that the mental health impacts of living with long‐term conditions are greater in young adulthood compared to older adulthood, due to greater disruption to identity and routine life events. Objectives: To explore the impact of living with long‐term conditions in young adulthood on mental health and identity, and what helps living well with these conditions. Methods: Fifteen in‐depth interviews with young adults with various conditions were conducted and analysed thematically. Results: Themes related to the impacts on mental health and identity include the following: negative mood and depression; anxiety and fear for the future; and identity as 'ill'/abnormal compared to former self and 'normal' others. Themes related to suggestions for addressing negative impacts include the following: promotion of positive thinking; support reaching acceptance with altered identity and limitations (through stages of denial, anger, depression, then acceptance); and more professional mental health support. Discussion: In order to promote mental health and a positive sense of self/identity, young adults with long‐term conditions should be offered advice and support on positive thinking; the long and difficult process of reconstructing identity; and reaching acceptance. This is particularly important for young adults for whom the identity reconstruction process is more complex and psychologically damaging than for older adults, as this life stage is associated with health/vitality and illness represents a shift from a perceived normal trajectory to one that appears and feels abnormal. [ABSTRACT FROM AUTHOR]

Background: Large‐scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health‐care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care. Methods: Patient co‐investigators and a researcher co‐designed and conducted this study. A survey was administered to patients and family members. Key informant interviews and previous research informed the development of the survey tool. The survey data were analysed using exploratory factor analysis to identify the underlying dimensions in the data. Cronbach's alpha was used to determine reliability. Results: A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). The mean age of the respondents was 54 years. The majority of participants were female, well‐educated, retired, married and lived in an urban centre. Seven motivational factors explained 65% of the total variance. Analysis of internal consistency revealed acceptable reliability for all items. The seven motivations were as follows: Self‐fulfillment, Improving Healthcare, Compensation, Influence, Learning New Things, Conditional and Perks. Conclusion: The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement. A deeper knowledge of volunteer motivations will not only create meaningful engagement opportunities for patients, but also enable health organizations to gain from the experience of these individuals, thereby enhancing quality and sustainability of patient engagement programmes. [ABSTRACT FROM AUTHOR]

Background: Singapore is becoming a world‐class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies. Objective: To explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore. Design: Semi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis. Results: Whilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio‐political environment and prevailing social and professional hierarchies. They also identified asset‐based strategies to overcome these, in particular, a more community‐oriented approach. Conclusion: The cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities. [ABSTRACT FROM AUTHOR]

Background: A large proportion of ambulance callouts are for men with mental health and/or alcohol and other drug (AOD) problems, but little is known about their experiences of care. This study aimed to describe men's experiences of ambulance care for mental health and/or AOD problems, and factors that influence their care. Methods: Interviews were undertaken with 30 men who used an ambulance service for mental health and/or AOD problems in Australia. Interviews were analysed using the Framework approach to thematic analysis. Results: Three interconnected themes were abstracted from the data: (a) professionalism and compassion, (b) communication and (c) handover to emergency department staff. Positive experiences often involved paramedics communicating effectively and conveying compassion throughout the episode of care. Conversely, negative experiences often involved a perceived lack of professionalism, and poor communication, especially at handover to emergency department staff. Conclusion: Increased training and organizational measures may be needed to enhance paramedics' communication when providing care to men with mental health and/or AOD problems. [ABSTRACT FROM AUTHOR]

Objective: This study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of "off" symptoms. Methods: During qualitative interviews, CPs of PwP sampled by convenience through the Michael J Fox Foundation online clinical trial matching service were asked to describe their familiarity with "off" symptoms, how "off" symptoms were discussed with clinicians, and the impact of "off" symptoms on them. Data were analysed using constant comparative technique by all members of the research team. Results: A total of 20 CPs were interviewed. Compared with PwP, they were more likely to describe "off" symptoms to clinicians. CPs identified important aspects of patient‐centred care for PD: establishing a therapeutic relationship, soliciting and actively listening to information about symptoms, and providing self‐management support to both PwP and CPs. CPs said that clinicians did not always engage CPs, ask about "off" symptoms or provide self‐management guidance, limiting their ability to function as caregivers. Conclusion: By not engaging and educating CPs, "off" symptoms may not be identified or addressed, leading to suboptimal medical management and quality of life for PwP. These findings must be confirmed on a broader scale through ongoing research but suggest the potential need for interventions targeted at clinicians and at CPs to promote patient‐centred care for PwP. [ABSTRACT FROM AUTHOR]

Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed. [ABSTRACT FROM AUTHOR]

Background: Design of rehabilitation environments is usually "expert" driven with little consideration given to the perceptions of service users, especially patients and informal carers. There is a need to engage with consumers of services to gain their insights into what design aspects are required to facilitate optimum physical activity, social interaction and psychological responses when they are attempting to overcome their limitations and regain function. Research design: Qualitative exploratory study. Method: Interviews were conducted with patients (n = 54) and informal carers (n = 23), and focus groups with rehabilitation staff (n = 90), from the three metropolitan South Australia rehabilitation health services, comprising different building and environmental configurations. Thematic analysis was assisted by the use of NVivo 11 qualitative software, with pooled data from all interviews and focus groups undergoing open, axial and finally selective coding. Results: Four major themes were identified as follows: (a) choice can be an Illusion in a rehabilitation ward; (b) access to outside areas is a priority and affects well‐being; (c) socialization can be facilitated by the environment; and (d) ward configuration should align with the model of care. Discussion and Conclusion: Participants who encountered the most restrictive environments accepted their situation until probed to consider alternatives; those who enjoyed the most choice and access to facilities showed the greatest enthusiasm for these affordances. Future architectural designers should therefore consider the perceptions of a wide range of consumers with varying experiences to ensure they understand the complex requirements of patients and that the ward design facilitates the optimum rehabilitation model of care. [ABSTRACT FROM AUTHOR]

Background: Barrett's oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long‐term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients' personal burden, care delivery experience and participation in health‐care delivery decisions. Objective: To identify and explore factors impacting BO patients' health‐related quality of life, follow‐up needs and views on new models of follow‐up care. Design: An exploratory qualitative approach was adopted using semi‐structured, in‐depth, one‐to‐one interviews, audio‐recorded and transcribed verbatim. Patients undergoing BO surveillance, at a single NHS hospital, were recruited using purposive sampling with the aim of achieving maximum variation. Data were analysed using framework analysis approach, supported by NVivo Pro 11. Results: Data saturation occurred after 20 participant interviews. Ten subthemes and three main themes emerged from the analysis: (a) burden of disease—symptom control, worry of oesophageal cancer and surveillance endoscopy; (b) follow‐up experiences—follow‐up care, at this NHS hospital, was found to be inconsistent and often inadequate to meet patients' needs, in particular a lack of disease‐specific information; and (c) follow‐up needs—participants sought enhanced communication, organization and structure of care. They highly valued face‐to‐face interaction with a specialist, and the concept of direct secondary care access in‐between endoscopies was reassuring to participants. Conclusions: This qualitative research provides an in‐depth account of the patients' perspective of BO, the effectiveness of follow‐up care and patient opinion on new follow‐up systems. [ABSTRACT FROM AUTHOR]

Context: Collecting feedback from patients about their experiences of health care is an important activity. However, improvement based on this feedback rarely materializes. In this study, we focus on answering the question—"what is impeding the use of patient experience feedback?" Methods: We conducted a qualitative study in 2016 across three NHS hospital Trusts in the North of England. Focus groups were undertaken with ward‐based staff, and hospital managers were interviewed in‐depth (50 participants). We conducted a conceptual‐level analysis. Findings: On a macro level, we found that the intense focus on the collection of patient experience feedback has developed into its own self‐perpetuating industry with a significant allocation of resource, effort and time being expended on this task. This is often at the expense of pan‐organizational learning or improvements being made. On a micro level, ward staff struggled to interact with feedback due to its complexity with questions raised about the value, validity and timeliness of data sources. Conclusions: Macro and micro prohibiting factors come together in a perfect storm which provides a substantial impediment to improvements being made. Recommendations for policy change are put forward alongside recognition that high‐level organizational culture/systems are currently too sluggish to allow fruitful learning and action to occur from the feedback that patients give. [ABSTRACT FROM AUTHOR]

Background: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods: An explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results: Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion: This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research. [ABSTRACT FROM AUTHOR]

Abstract: Context: Reflective accounts of public involvement in research (PI) are important for helping researchers plan and deliver more effective PI activities. In particular, there is a need to address power differentials between team members that can prohibit effective and meaningful involvement. Objective: To critically reflect on the PI practices that underpinned our research project on intimacy and sexuality in care homes, to develop a series of recommendations for improving future PI activities. Setting: The research team comprised five academics from nursing, public health, sociology and psychology, and two members of the public with experience of sex education, and lesbian, gay, bisexual and trans issues in older populations. In order to address power differentials within the group, we developed an approach to PI practice that was grounded in values of openness, inclusion and transparency. Method: Reflective commentaries on the strengths and weaknesses of the team's approach to PI were gathered through interviews and open‐ended questionnaires with research team members. These views were collated and discussed at a workshop comprising research team members and an additional member of the public to generate recommendations for future PI practice. Results: A number of strengths and limitations of our approach to PI were identified. Clear recommendations for improving PI practice were developed for three broad areas of identified difficulty: (i) communication within and between meetings; (ii) the roles and responsibilities of team members; and (iii) PI resources and productivity. Discussion and conclusion: These recommendations add to the developing body of guidance for conducting effective PI. [ABSTRACT FROM AUTHOR]

Background Patient engagement in research ( PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. Objective To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. Methods We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team. Results Participants' experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team. Conclusions The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient-researcher partnerships are led by researchers with little experience of engaging patients in research. [ABSTRACT FROM AUTHOR]

Background Patient-centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient-centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient-centred care, conceptualize what they are implementing. Objective To examine how hospital employees conceptualize patient-centred care. Research Design We conducted qualitative interviews about patient-centred care during site four visits, from January to April 2013. Subjects We interviewed 107 employees, including leadership, middle managers, front line providers and staff at four US Veteran Health Administration ( VHA) medical centres leading VHA's patient-centred care transformation. Measures Data were analysed using grounded thematic analysis. Findings were then mapped to established patient-centred care constructs identified in the literature: taking a biopsychosocial perspective; viewing the patient-as-person; sharing power and responsibility; establishing a therapeutic alliance; and viewing the doctor-as-person. Results We identified three distinct conceptualizations: (i) those that were well aligned with established patient-centred care constructs surrounding the clinical encounter; (ii) others that extended conceptualizations of patient-centred care into the organizational culture, encompassing the entire patient-experience; and (iii) still others that were poorly aligned with patient-centred care constructs, reflecting more traditional patient care practices. Conclusions Patient-centred care ideals have permeated into healthcare systems. Additionally, patient-centred care has been expanded to encompass a cultural shift in care delivery, beginning with patients' experiences entering a facility. However, some healthcare employees, namely leadership, see patient-centred care so broadly, it encompasses on-going hospital initiatives, while others consider patient-centred care as inherent to specific positions. These latter conceptualizations risk undermining patient-centred care implementation by limiting transformational initiatives to specific providers or simply repackaging existing programmes. [ABSTRACT FROM AUTHOR]

Background Decision aids can be used to support shared decision making ( SDM). A patient-oriented treatment decision aid ( DA) was developed for type 2 diabetes but its use by general practice staff appeared to be limited. Objectives To explore views of practice staff towards SDM and the DA. Design A mixed-methods study within the Dutch PORTDA-diab trial. Setting and participants Included were 17 practices with staff members who were responsible for routine diabetes care and had worked with the DA, and 209 of their patients. Methods Interviews were conducted focusing on applicability, usefulness and feasibility of the DA. Interviews were tape-recorded, transcribed verbatim and subjected to content analysis for identifying and classifying views. Patient-reported data about the use of the DA were collected. Associations between specific views and use of the DA were tested using Pearson point-biserial correlation. Results The majority of practice staff expressed positive views towards SDM, which was associated with making more use of the DA. Most of the staff expressed that the DA stimulated a two-way conversation. By using the DA, several became aware of their paternalistic approach. Some staff experienced a conflict with the content of the DA, which was associated with making less use of the DA. Conclusions The DA was considered useful by practice staff to support SDM. A positive view towards SDM was a facilitator, whereas experiencing a conflict with the content of the DA was a barrier for making use of the DA. [ABSTRACT FROM AUTHOR]

Background Audit and feedback on professional practice and health care outcomes are the most often used interventions to change behaviour of professionals and improve quality of health care. However, limited information is available regarding preferred feedback for patients, professionals and health insurers. Objective Investigate the (differences in) preferences of receiving feedback between stakeholders, using the Dutch Head and Neck Audit as an example. Methods A total of 37 patients, medical specialists, allied health professionals and health insurers were interviewed using semi-structured interviews. Questions focussed on: 'Why,' 'On what aspects' and 'How' do you prefer to receive feedback on professional practice and health care outcomes? Results All stakeholders mentioned that feedback can improve health care by creating awareness, enabling self-reflection and reflection on peers or colleagues, and by benchmarking to others. Patients prefer feedback on the actual professional practice that matches the health care received, whereas medical specialists and health insurers are interested mainly in health care outcomes. All stakeholders largely prefer a bar graph. Patients prefer a pie chart for patient-reported outcomes and experiences, while Kaplan-Meier survival curves are preferred by medical specialists. Feedback should be simple with firstly an overview, and 1-4 times a year sent by e-mail. Finally, patients and health professionals are cautious with regard to transparency of audit data. Conclusions This exploratory study shows how feedback preferences differ between stakeholders. Therefore, tailored reports are recommended. Using this information, effects of audit and feedback can be improved by adapting the feedback format and contents to the preferences of stakeholders. [ABSTRACT FROM AUTHOR]

Service users' involvement in mental health service research is increasingly acknowledged as important, yet, whilst involving users of mental health services as research participants is commonplace, seeking out their experience and indeed their 'expertise' to facilitate the development of tools to be used within mental health services is in its infancy. This article describes the involvement and views of service users in the development of a nursing metric-the Therapeutic Engagement Questionnaire. It presents their role in the three stages of development: generation, statement reduction and authentication. [ABSTRACT FROM AUTHOR]

Objective: To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions ‘1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?’ These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement. Methods: This single‐arm intervention study invited participants attending a reproductive and sexual health‐care clinic to view a 4‐min video‐clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later. Results: A total of 121 (78%) participants viewed the video‐clip before their consultation. Eighty‐four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty‐seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions. Conclusions: Enabling patients to view a short video‐clip before an appointment to improve information and involvement in health‐care consultations is feasible and led to a high uptake of question asking in consultations. Practice Implications: This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer‐targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence‐based questions. [ABSTRACT FROM AUTHOR]