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Breastfeeding is a crucial public health approach that reduces infant morbidity and mortality by providing essential nutrients and antibodies, and breast milk is easily digested. Breastfeeding and donated milk serve as a preventative measure against necrotising enterocolitis. Additionally, they protect against viruses and nosocomial sepsis. When a birthing parent's own milk is unavailable, alternative enteral nutrition for preterm or low‐birth‐weight infants is either donor human milk (DHM) or artificial formula. This study aimed to understand mothers' acceptance of the donor human milk bank (DHMB) and DHM. A qualitative phenomenological study was conducted in Limpopo Province, South Africa. The study used purposive sampling to select 23 mothers in postnatal and neonatal wards. Data collection was via in‐depth interviews using a semistructured interview guide. Manual data analysis using an interpretative phenomenological analysis (IPA) framework was used to coding. Concepts were grouped to generate themes. Three themes and nine subthemes were generated: (1) DHMBs (2) cultural perspective of DHMB, and (3) health considerations of DHM. Participants were unaware of the DHMB. Hesitancy in accepting DHM due to fear of contracting HIV was observed. Cultural beliefs are an influencing factor for use, while donation was driven by altruistic reasons, preventing waste, helping others and having previously benefited from DHM. The study found that mothers are willing to donate human milk. Willingness to donate can be increased by raising awareness about DHMB and addressing culture and safety concerns at antenatal clinics. Key messages: The study emphasises the possible willingness to accept the concept of donating and utilising donor human milk for newborns who do not have access to their mother's own milk. However, safety concerns, bonding and cultural issues should be addressed.Promoting breastfeeding and milk donation in communities requires addressing cultural and health concerns by utilising the service of community health workers.Education about safe breast milk banking before neonatal intensive care unit admission is also an important factor. [ABSTRACT FROM AUTHOR]

We investigated nurses' experiences of hospital‐acquired pressure injury (PI) prevention in acute care services to better understand how PI prevention may be optimised. We used the Theoretical Domains Framework to systematically identify barriers and enablers to evidence‐based preventive practices as required by the International Guideline. This study was one element of a complex capacity building project on PI surveillance and prevention within the acute health service partners of Monash Partners Academic Health Science Centre, an accredited academic health partnership located in Melbourne, Australia. We adopted a qualitative descriptive design. We interviewed 32 nurses that provided care in intensive care units, general wards and COVID wards of four acute care services. Nurses were recruited from four large acute care services (three public, one private) located in Melbourne. Most of them worked with patients who were at high risk of hospital‐acquired PI on a daily basis. Interview transcripts were coded and analysed using thematic analysis guided by the Theoretical Domains Framework. The domains referred to most frequently by all participants included: Knowledge, Skills, Social/Professional Role and Identity, Beliefs about Capabilities, and Environmental Context and Resources. The key barriers discussed by nurses included gaps in nurses' knowledge and skills related to identification and staging of PI, heavy nursing workload and inadequate staffing levels, stigma and self‐blame related to PI identification, and exacerbating impacts of the COVID‐19 pandemic. Main facilitators discussed were training programmes, nursing audits and feedback, and teamwork. Participants suggested improvements including accessible and tailored training, visual reminders, and addressing heavy workloads and emotional barriers nurses face. Investing in tailored training initiatives to improve nurses' knowledge and organisational changes to address low level staffing and heavy workloads are urgently needed to support nurses in delivering optimal care and preventing hospital‐acquired PI. [ABSTRACT FROM AUTHOR]

Introduction: Increased awareness of testicular diseases can lead to early diagnosis. Evidence suggests that men's awareness of testicular diseases is low, with many expressing their willingness to delay help‐seeking for symptoms of concern. The risk of testicular diseases is higher in gender and sexual minority groups. In this study, we discuss the codesign, refinement and launch of 'On the Ball', an inclusive community‐based 'testicular awareness' campaign. Methods: The World Café participatory research methodology was used. Individuals from Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, policymakers, media/marketing experts and graphic designers were recruited. Participants were handed a brief for 'On the Ball', which was designed based on feedback from a previous World Café workshop. They were assigned to three tables. Participants rotated tables at random for three 20‐min rounds of conversations. Each table had a facilitator who focussed on one element of the campaign brief. Data were collected using audio recorders and in writing and were analysed thematically. Results: Thirteen individuals participated in the workshop. The following themes emerged from the data: (i) campaign identity, (ii) campaign delivery and (iii) campaign impact. Participants recommended enhancements to the campaign logo, slogan, social media posts and poster. They suggested delivering the campaign online via social media and offline using various print and broadcast media. Participants recommended targeting areas with a large number of men such as workplaces. To help measure the impact of the campaign, participants proposed capturing social media analytics and tracking statistics relating to testicular diseases. Recommendations were used to refine the 'On the Ball' campaign and launch it in a university. In total, 411 students engaged with the various elements of the campaign during the soft launch. Conclusions: 'On the Ball' campaign visuals ought to be inclusive. Online and offline campaign delivery is warranted to reach out to a wider cohort. Campaign impact can be captured using social media analytics as well as measuring clinical outcomes relating to testicular diseases. Future research is needed to implement the campaign online and offline, explore its impact and evaluate its feasibility, acceptability, cost and effect on promoting testicular awareness. Patient or Public Contribution: The 'On the Ball' campaign was codesigned and refined with members of Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, health policymakers, media and marketing experts and graphic designers using the World Café participatory research methodology. [ABSTRACT FROM AUTHOR]

Background: Supported self‐management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self‐management support (SMS) for people living with a lower‐grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. Methods: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. Results: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP‐support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help‐seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. Conclusions: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self‐management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. Patient or Public Contribution: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings. [ABSTRACT FROM AUTHOR]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [ABSTRACT FROM AUTHOR]

Aim: To understand the real experience of family members of patients in neurosurgical intensive care unit (NICU) during intra‐hospital transport (IHT), explore their inner needs and provide effective intervention measures for the construction of standardized IHT plan. Design: A descriptive qualitative study. Methods: For the purposes of this study, 10 family members of IHT patients were included using a purposive sampling method. Semi‐structured in‐depth interviews were used to collect the data, Nvivo 11 software was used to organize the data, and Colaizzi's 7‐step descriptive phenomenology method was used to analyse the data. Results: A total of three themes and nine subthemes were extracted, namely: Experience of emotional changes at different stages (uncertainty before transfer, complex internal activity during transit, ambivalence after transfer); Perception of problems in IHT (poor doctor–patient communication, weak awareness of risk assessment, deficiencies in the transfer procedure); Consciousness of the real needs (emotional respect and closeness, stay informed of the progression of the disease, greater social support). Conclusion: Family members of patients in the NICU have complex internal experiences and multiple support needs during IHT, reflecting the need for further standardization of the transport process. In the future, we should improve the mode of safe IHT involving doctors, nurses and family members of patients, ensure the safety of patient transport, meet the social support needs of family members and improve the experience of IHT and the medical satisfaction of family members. [ABSTRACT FROM AUTHOR]

Objective: Patients with rheumatoid arthritis (RA) may need to access rheumatology care between scheduled visits. WelTel is a virtual care platform that supports secure two‐way text‐messaging between patients and their health care team. The objective of the present study was to explore perspectives and experiences of health care providers (HCPs) and patients related to the use of WelTel as an adjunct to routine care. Methods: Seventy patients with RA were enrolled in a six‐month WelTel pilot project launched in September 2021. Patients received monthly "How are you?" text message check‐ins and could message their health care team during clinic hours to request health advice. The current project is a qualitative study of the WelTel pilot. A subgroup of pilot participants was purposively sampled and invited to participate in interviews. A thematic analysis of transcripts was conducted using a deductive approach leveraging quality of care domains. Results: Thirteen patients (62% female, mean age 62 years, 10 White) completed interviews. Patients' views suggested that text messaging with the rheumatology team supported high‐quality care across multiple quality domains including patient‐centeredness, timeliness, efficiency, safety, effectiveness, equity, and appropriateness. Seven HCPs (57.1% female, one pharmacist and six rheumatologists) completed interviews. HCPs' perspectives varied based on their experience with the WelTel platform. Additional themes reported by HCPs included perceived increased workload and burnout. Conclusions: Patients with RA perceived text‐based messaging as supporting high‐quality care. The impact of increased communications on HCP burnout and workload requires consideration, and future studies should evaluate the effect of texting on patient outcomes. [ABSTRACT FROM AUTHOR]

Background and Purpose. Internationalization is expanding its presence in higher education in the United States. Reflecting this trend that includes incorporating global perspectives in the curricula, physical therapist education programmes increasingly offer international opportunities such as International Service-Learning (ISL) to their students. Service-learning, a teaching strategy that integrates community service with structured learning activities, has gained broad acceptance in health professions education including physical therapy, and is therefore the focus of this paper. The specific purposes of this paper were to identify and analyse the commonalities that existed among established ISL programmes within physical therapist education programmes in terms of structures and processes, and to consider its broader implications for physical therapist education. Methods. A descriptive, exploratory study was performed using grounded theory. Snowball and purposive, theoretical sampling yielded 14 faculty members with experience in international service, international learning or ISL in physical therapist education programmes. Faculty were interviewed by phone. Interview transcriptions and course documents were analysed applying grounded theory methodology. Data from eight programmes which met the operational definition of established ISL were used to address the purposes of this paper. Results. Five phases of establishing an ISL programme were identified: development, design, implementation, evaluation, and enhancement. Although no single model exists for ISL in physical therapist education; commonalities in structures and processes were identified in each phase. However, attention to service objectives and outcomes is lacking. Conclusions. While analysis revealed that each programme shared commonalities and demonstrated differences in structures and processes compared with the other programmes, the study demonstrated a general lack of focus on formal community outcomes which raises ethical concerns. Future research and dialogue is warranted to explore ethics and good practice in ISL and other global health initiatives in physical therapy. This study may facilitate reflections and creative solutions by individual faculty and the profession. Copyright © 2010 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: To explore rural residents' experiences of access to maternity care with consideration of the policy context. Design: This paper describes findings from focus groups with parents which formed part of case study data from a larger study. Setting: Four north Queensland rural towns. Participants: Thirty-three parents living in one of the four rural towns. Main outcome measures: Identifying prevalent themes in case studies regarding rural parents' expectations and experiences in accessing maternity care. Results: Parents desired a local, safe and consistent maternity service. Removing or downgrading rural services introduced new barriers to care for rural residents: (i) increased financial costs; (ii) family issues; and (iii) safety concerns. Conclusions: Although concerns about rural residents' health status and health care access have received significant policy attention for over a decade, many of the problems which prompted these policy initiatives remain today. Current policy approaches should be re-evaluated in order to improve rural Australians' access to vital health services such as maternity care. [ABSTRACT FROM AUTHOR]

The study examined the effects of transition employment support to two cohorts of young people who were in their last year in school or college in 2005/2006 and 2006/ 2007. This paper reports the views of carers, teachers and support workers of the impact this additional support made to the young people. Analysis of the data reveals a difference between the views of carers and those of professionals. The paper argues that these differences may reflect different understandings of the aim and purpose of transition support and which may make it difficult to achieve a smooth transition for all stakeholders when not taken into account. This may have implications for how to structure and deliver transition support, some of which are being outlined in the discussion. [ABSTRACT FROM AUTHOR]

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' ( AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. [ABSTRACT FROM AUTHOR]

The worldwide growth in formal youth mentoring programmes over the past two decades is partly a response to the perception that young people facing adversity do not have access to supportive relationships with adults and positive role models in their communities to the degree they once had. Formal mentoring programmes facilitate the development of a friendship or ‘match’ between an older volunteer and a young person, with the objective of supporting the young persons’ personal and social development. Drawing on 66 semi‐structured interviews with young people, parents, mentors and caseworkers associated with nine youth mentoring matches in the Big Brothers Big Sisters Programme in Ireland, this paper analyses the forms of social support evident in the mentor–mentee relationships and highlights how the mentoring relationship was perceived to have impacted on the well‐being of the young people participating. The findings reflect the consensus in the mentoring literature that close, well‐established mentoring relationships have the potential to bring about meaningful change in the lives of young people. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim The aim of this study was to explore the potential use of visual diarizing to enable intensive care unit (ICU) survivors to create their story of recovery. Background An ICU experience can have deleterious psychological and physical effects on survivors leading to reductions in quality of life which for some may be of significant duration. Although there has been exploration of many interventions to support recovery in this group, service provision for survivors remains inconsistent and inadequate. Design and participants A qualitative interpretive biographical exploration of the ICU experience and recovery phase of ICU survivors using visual diarizing as method. This paper is a component of a larger study and presents an analyses of one participant's visual diary in detail. Methods Data collection was twofold. The participant was supplied with visual diary materials at 2 months post-hospital discharge and depicted his story in words and pictures for a 3-month period, after which he was interviewed. The interview enabled the participant and researcher to interpret the visual diary and create a biographical account of his ICU stay and recovery journey. Findings The analysis of one participant's visual diary yielded a wealth of information about his recovery trajectory articulated through the images he chose to symbolize his story. The participant confirmed feelings of persecution whilst in ICU and was unprepared for the physical and psychological disability which ensued following his discharge from hospital. However, his story was one of hope for the future and a determination that good would come out of his experience. He considered using the visual diary enhanced his recovery. Conclusions The participant perceived that visual diarizing enhanced his recovery trajectory by enabling him to recreate his story using visual imagery in a prospective diary. Relevance to clinical practice Prospective visual diarizing with ICU survivors may have potential as an aid to recovery. [ABSTRACT FROM AUTHOR]

Aim: To offer a practical way in which the status of healthcare assistants (HCAs) can be increased by drawing on their experience, knowledge and skillset, whilst mentoring medical students during an HCA project. Design: Qualitative, reflexive thematic analysis. Methods: One‐to‐one semi‐structured interviews were conducted between April and June 2019, with 13 participants. Participants included five healthcare assistants; three practice development nurses, two of whom were former HCAs; one registered general nurse and four clinical educators. Results: Two themes were identified: HCAs as silent, invisible caregivers (theme 1) and the formation of an HCA identity through mentoring (theme 2). HCAs are often silent performers of complex patient care with limited opportunity to engage in the interprofessional team dialogue. Social perceptions of HCAs describe them as a marginalised, poorly understood, 'unqualified' group with 'lowly status'. Mentoring medical students allows HCAs to draw on their experience, knowledge and skillset by actively contributing to the learning and development of future doctors. Conclusion: The mentoring of medical students gave HCAs an active voice within the interprofessional team, instilling their confidence and self‐worth. Mentoring allowed HCAs to move from a homogenous, group‐based social identity to a role‐based one that enabled HCAs to reveal the true extent of their work whilst negotiating their place and identity within the interprofessional team. Impact: Leaders in healthcare will see that a re‐evaluation of HCAs as performers of basic, hands‐on patient care is needed to breakdown ingrained beliefs, eliminating a 'us and them' mentality. Involving HCAs in the mentoring of medical students will impact on the personal development of both HCAs and medical students in the cultivation of a future, person‐centred, inclusive and collaborative workforce. Reporting Method: COREQ guidelines to enhance methodological rigour were strictly adhered to. Patient and Public Involvement: There is no patient or public involvement. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Introduction: Healthcare professionals have an important role in advocating for the adoption of a brain‐healthy lifestyle for optimal multiple sclerosis (MS) care. Nonetheless, studies to date have mainly focussed on the consumer perspective. Herein, we aimed to explore the current practices of how healthcare professionals support protective, lifestyle‐related behaviour changes to optimise brain health among people living with MS (plwMS), and their perspectives of professional roles. Methods: Australian healthcare professionals were recruited via study advertisements, purposive and snowball sampling, to participate in an online, semi‐structured and audio‐recorded interview. Clinicians were eligible if they had a minimum of a tertiary Bachelor's degree and 12‐months experience working with plwMS, access to the Internet and sufficient time to participant. An inductive, data‐driven form of reflexive thematic analysis was undertaken before thematic categorisation of the quotes from transcripts. Data analysis was guided by the methods of Braun and Clark and the study's underpinnings drew on the constructs of the Social Cognitive Theory (SCT). Results: Six physicians, 10 MS nurses, 18 allied health professionals, one exercise therapist and one alternative therapist were interviewed. Three primary themes encompassing the perceived role of healthcare professionals in supporting a brain‐healthy lifestyle were identified: (1) the empowering role, (2) collaborative role and (3) communicative role. External factors/forces including time constraints, professional expertise, training and skill set, power dynamics, consumer readiness, health literacy, self‐efficacy and motivation are at play, and affect how/when healthcare professionals may support behaviour change to optimise lifelong brain health for plwMS. Conclusion: Healthcare professionals recognise their critical role in encouraging and supporting the adoption of a brain‐healthy lifestyle to optimise lifelong brain health for plwMS. However, discord is evident when they underestimate the complexity of translating knowledge of lifestyle‐related behaviour change(s) into action. Greater awareness must be made in recognising and addressing the bidirectionality of external factors such as those in the SCT, that may influence how behaviour change occurs. Public Contribution: Healthcare professionals volunteered to be interviewed as part of the data collection phase of this study. [ABSTRACT FROM AUTHOR]

Context: Best practice guidelines for the recovery and return to work (RTW) of people with mental disorders recommend access to the services of an interdisciplinary team combining pharmacological, psychological and work rehabilitation interventions. In the Canadian context, primary healthcare services are responsible for providing these services for people with common mental disorders, such as depressive or anxiety disorders. However, not everyone has easy access to these recommended primary healthcare services, and previous studies suggest that multiple personal, practice‐related and organizational factors can influence the patient's journey. Moreover, previous studies documented that family physicians often work in silos and lack the knowledge and time needed to effectively manage by themselves patients' occupational health. Thus, the care and service trajectories of these patients are often suboptimal and can have important consequences on the person's recovery and RTW. Objective and Population Studied: Our study aimed to gain a better understanding of the patient journeys and the factors influencing their access to and experience with primary healthcare services while they were on sick leave due to a common mental disorder. Methods: A descriptive qualitative research design was used to understand and describe these factors. Conventional content analysis was used to analyze the verbatim. Results: Five themes describe the main factors that influenced the patient's journey of the 14 participants of this study: (1) the fragmented interventions provided by family physicians; (2) patients' autonomy in managing their own care; (3) the attitude and case management provided by the insurer, (4) the employer's openness and understanding and (5) the match between the person's needs and their access to psychosocial and rehabilitation services. Conclusions: Our findings highlight important gaps in the collaborative practices surrounding the management of mental health‐related sick leave, the coordination of primary healthcare services and the access to work rehabilitation services. Occupational therapists and other professionals can support family physicians in managing sick leaves, strengthen interprofessional and intersectoral collaboration and ensure that patients receive needed services in a timelier manner no matter their insurance coverage or financial needs. Patients of Public Contribution: This study aimed at looking into the perspective of people who have lived or are currently experiencing a sick leave related to a mental health disorder to highlight the factors which they feel hindered their recovery and RTW. Additionally, two patient partners were involved in this study and are now engaged in the dissemination of the research results and the pursuit of our team research programme to improve services delivered to this population. [ABSTRACT FROM AUTHOR]

Objectives: Sudden smell loss is one of the early symptoms of COVID‐19. Although it is stated that the loss of smell and taste following COVID‐19 improves within a few weeks, there are also cases that do not improve for a long time. The aim of this study is to reveal long‐term smell loss experiences after COVID‐19. Methods: A qualitative approach was adopted. We conducted semistructured interviews with 11 participants who had smell loss for at least 3 months. Interviews were recorded, transcribed and evaluated using a thematic analysis for qualitative data. Results: Nutrition and appetite, personal hygiene, threats to safety and emotional changes were the main themes created by the authors and were the areas where participant expressions focused. The participants used oral/nasal corticosteroid therapy for smell loss and received short‐term olfactory training, but could not find a solution. Conclusions: Long‐term smell loss problems, which were neglected during the pandemic period, should be carefully evaluated due to their negative effects. Understanding and focusing on the negative effects of loss of smell may contribute to the solution of long‐term smell loss problems. Patient and Public Contribution: Eleven participants who experienced long‐term loss of smell following COVID‐19 contributed to the study. They enriched the study by describing the effects of their experiences. There was no other participation or contribution from the public to the research. [ABSTRACT FROM AUTHOR]

Background: Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution: People with Long Covid advised on all stages of this research. [ABSTRACT FROM AUTHOR]

Background: A high incidence of children with congenital heart disease (CHD) was found in Saudi Arabia (SA). International literature reports that children with CHD exhibit behavioural and emotional issues due to experiencing hospitalisation and clinical treatments combined with a dearth of qualitative understanding of the experiences of younger children with CHD. Therefore, the aim was to explore the behaviour and emotions of 4–10‐year‐olds with CHD in SA through children's accounts of their own experiences and parental proxy reports of children's behaviour and emotions. Methods: Charmaz's constructivist grounded theory (GT) approach was used. Twenty single semi‐structured interviews of 10 child/parent dyads were undertaken at a hospital clinic in SA. Children's interviews were combined with an arts‐based approach using drawings, pictures and faces of emotions (emojis). Constant comparison analysis was undertaken. Consolidated Criteria for Reporting Qualitative Research guidelines was followed in reporting this study. Findings: A substantive GT: children's behavioural and emotional reactions towards stressors related to living with CHD was developed and provides new insights into children's and parents' perceptions of the children's behavioural and emotional reactions to living with CHD in SA. The theory proposes that children's reactions to living with CHD relate to medical treatment stressors, sociocultural stressors and physical change stressors. Several further factors influenced children's responses to these stressors. Conclusion: Children and parents in SA contributed to a new understanding of the relationship between CHD and children's behavioural and emotional reactions. In addition, findings support the need for early assessment of behaviour and emotions among children with CHD and the application of preventative and supportive measures for the children and their families in SA. Patient or Public Contribution: Before the research commenced, the developmental appropriateness of the proposed arts‐based data collection tools was tested with three healthy children aged 6–9 years old; the tools were then revised accordingly before the interviews were undertaken. [ABSTRACT FROM AUTHOR]

Aim: To explore nursing students' moral distress (MD) experiences in clinical settings. Design: An interpretative phenomenological analysis (IPA) design was employed. Methods: Purposive sampling was used. In‐depth semi‐structured face‐to‐face interviews were conducted from December 2020 to June 2021 with nursing students who were taking the internship course in clinical settings. Data analysis was conducted following Dickman et al.'s (1989) method. Results: Ten nursing students participated in this study. Three main themes were identified, including (1) negative learning environments, (2) internal disgust and (3) threats to professional identity. Conclusion: Findings showed that value conflict, lack of knowledge of ethical standards and its application, and unprofessional approaches result in negative environmental learning perceptions from the nursing students. Therefore, due to being unable to change the situation, they start to feel guilt and shame and, as a result, decide to escape the problem instead of managing it. These feelings lead to internal disgust. This issue indicates the importance of improving the knowledge and perception of these situations. Thus, nursing students must be prepared for the real world, where their ideals are constantly challenged. MDs were experienced as threats to dignity, inequality, distrust, and change of mentality towards nursing, characterised as threats to professional identity. It is suggested to inquire about the process of nursing students' resiliency in morally disturbing situations to deduce the suitable approach for clinical education. [ABSTRACT FROM AUTHOR]

Aim: To describe the crisis management competencies needed in a hospital setting during the COVID‐19 pandemic from the perspective of nurse leaders. Background: The COVID‐19 pandemic generated many challenges for nurse leaders in hospitals, and management competencies are highlighted. However, there is little evidence available about nurse leaders' perceptions of the crisis management competencies needed in such situations. Methods: A qualitative, descriptive, semi‐structured interview study of nurse leaders (n = 20) was conducted between June and October 2021 in one Finnish central hospital. The data were analysed using inductive content analysis. Results: The analysis yielded five main categories of crisis management competencies needed in a hospital setting during the pandemic: interactive communication competence, psychological resource management competence, systematic and proactive organising competence, active networking abilities and practices and change management approach in crisis management. Conclusions: Nurse leaders need new and different crisis management competencies in hospital organisations. The COVID‐19 pandemic changed the working culture of nurse leaders, as they faced challenges that needed knowledge and skills beyond their previous management competence. Implications for nursing management: Additional training for nurse leaders in crisis management is needed. This training should reflect the competencies identified as necessary in crisis situations so that nurse leaders will be able to manage crisis situations effectively in future. Reporting method: The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used in reporting the findings. Patient or public contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to understand the factors that contribute to the development of the nursing associate professional identity. Design: A 3‐year longitudinal qualitative study of trainee nursing associates. Methods: Trainee nursing associates in England were interviewed remotely annually in February 2020, March 2021 and March 2022. They also provided diary entries. Data were anonymised, transcribed and analysed thematically. Results: Nursing associate professional identity was developed through: increased knowledge, skills and responsibility; and self‐perceptions of identity alongside responses to the role by colleagues. Tensions arose when the scope of practice expected by organisations differed from that expected by the nursing associates. Frustrations occurred when nursing associates were perceived as substitutes for Registered Nurses in the context of nursing workforce shortages. Conclusion: Nursing associates in this study clearly valued their new knowledge, skills and responsibility, enabling them to provide enhanced patient care. Increased clarity of role boundaries is necessary in enhancing the professional identity of nursing associates and reducing inter‐professional tensions arising from role ambiguity within health and social care organisations. Implications for the Profession: National guidance and employers should provide clarity on the boundaries of the nursing associate role which will strengthen their professional identity and mitigate role ambiguity within health and social care organisations. Reporting Method: The Consolidated Criteria for Reporting Qualitative Research has been used to guide reporting. Patient of Public Contribution: A patient and public involvement group was consulted during the initial study design stage. Impact: This study aimed to understand the factors which contribute to the development of a nursing associate professional identity.Nursing associate professional identity is developed through increased knowledge, skills and responsibility, and the perceptions of identity by participants themselves and their colleagues.The findings should inform the implementation of initiatives to clarify nursing associate role boundaries and the development of similar roles internationally. [ABSTRACT FROM AUTHOR]

Aim: This study aims to investigate how Lebanese nursing students perceive the challenges of implementing person‐centered care in clinical settings. Design: A qualitative descriptive design was adopted for this study. Methods: At one of Lebanon's top universities, a qualitative descriptive study design was used with 18 nursing students from various academic levels. Content analysis was used to generate the results after three focus group discussions. The Consolidated Criteria for Reporting Qualitative Research were used to report this study. Results: The content analysis gave rise to four main themes, namely, "overload", "challenges with education", "unawareness", "establishing connection", and "lack of initiatives related to policy". The results showed a number of obstacles that Lebanese nursing students believed were in the path of providing person‐centered care. These obstacles included organisational issues like time restraints and an intense workload, as well as interaction difficulties with patients and healthcare teams, and educational issues like insufficient instruction in person‐centered care concepts during nursing programs. [ABSTRACT FROM AUTHOR]

Introduction: Effective consumer engagement practices can enhance patient safety. This is important for consumers from ethnic minority backgrounds who are exposed to increased risk of patient safety events. Using the Systems Engineering Initiative for Patient Safety model, this study explored staff experiences of creating opportunities for engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety. Method: A qualitative study was conducted using semistructured interviews with cancer service staff from four cancer services across two states in Australia. Purposive sampling was used to recruit healthcare staff from a diverse range of professions. Data were analysed using the Framework Analysis method. Results: Fifty‐four interviews were conducted with healthcare staff. Analysis of the qualitative interview data identified enablers and associated challenges that contributed to creating a shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. Enablers and challenges are reported in relation to four themes: (1) co‐creating safety through shared understanding of care processes; (2) tools and technologies support planned communication; (3) organisational policy levers exist but lack implementation in direct care and (4) formal tasks incorporate consumer engagement more readily than informal interactions. Conclusion: The availability of infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now require expansion to support and create conditions for effective consumer engagement during informal and everyday care tasks. The use of innovative language support tools and cultural considerations are required at the service and system level to support consumer engagement in all types of care interactions. Public and Patient Involvement: The study was embedded within a larger project that included a consumer investigator and was guided by a consumer advisory group (CAG). These consumer team members have lived experience of cancer and are from diverse ethnic backgrounds. CAG members provided feedback on the draft interview guide and participant information for this study. [ABSTRACT FROM AUTHOR]

Background and Context: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion: Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Global migration has led to a sharp increase in the number of language‐discordant consultations (LDCs) in healthcare. Evidence on how healthcare providers (HCPs) meet migrant patients' needs while mitigating language barriers is lacking. Design: Using purposive and snowball sampling, we recruited twenty‐seven Dutch HCPs (Mage = 45.07, SD = 11.46) and conducted semi‐structured interviews to collect qualitative, open‐ended data for identifying the communication strategies used with migrant patients in LDCs. We analysed the transcripts using deductive and inductive approaches (e.g., constant comparative method from Grounded Theory). Final pattern codes (i.e., key themes) were discussed among the research team until mutual agreement had been achieved. Results: Five key themes emerged from the analyses: HCPs often 'got‐by' with (1) instrumental and (2) affective communication strategies used in language‐concordant consultations to start medical consultations. When some instrumental communication strategies were deemed ineffective (e.g., lingua franca, gesturing, etc.) to bridge language barriers, HCPs turned to (3) incorporating digital tools (e.g., Google Translate). When HCPs were unable to communicate with migrant patients at all, (4) informal, ad‐hoc and professional interpreters were involved. Finally, HCPs often (5) involved additional support to engage migrant patients to engage in treatment‐related behaviours. Discussion and Conclusions: Our results highlight the importance of raising awareness among HCPs about using various combinations of different strategies. The development of a guideline indicating the optimal combination of communication strategies for different medical consultation goals may be useful in reshaping the current communication behaviour of HCPs in LDCs. Patient or Public Contribution: HCPs were the study population involved in this qualitative study. Refugee health advisors, general practitioners and linguistic specialists (i.e., members of the Right2Health consortium) with experience with the Dutch healthcare system were involved throughout the development of this research. This includes a review of the research question, participant information sheet and interview topic guide as well as providing interpretations of the data and feedback to this manuscript. [ABSTRACT FROM AUTHOR]

Background: Food insecurity is a public health concern that has profound impact on physical and mental health, and on social well‐being. Pregnancy is a period in which food insecurity is likely to be particularly deleterious, due to the serious impact on both mother and child. Food insecurity is not routinely screened in antenatal healthcare settings, and the preferences of pregnant women regarding food insecurity screening and support are poorly understood. This study aimed to determine the views and preferences of food‐insecure pregnant women regarding food insecurity screening and support within antenatal healthcare. Methods: This qualitative descriptive study used face‐to‐face semi‐structured interviews, conducted in February and March 2023, to gain the views of purposively sampled food‐insecure, pregnant women in Melbourne, Australia. Food insecurity was evidenced by an affirmative response to at least one of three assessment items in a screening questionnaire. Qualitative content analysis was conducted to summarise the views and preferences of women. Results: Nineteen food‐insecure pregnant women were interviewed. Three themes were identified: (1) acceptability of being screened for food insecurity, (2) concerns about the consequences of disclosure and (3) preferences regarding food insecurity screening and supportive strategies that could be offered within an antenatal healthcare setting. Conclusion: Women were accepting of food insecurity screening being conducted within routine healthcare. Women identified potential benefits of routine screening, such as feeling supported by their clinician to have a healthy pregnancy and less pressure to voluntarily ask for food assistance. Women gave suggestions for the implementation of food insecurity screening to optimise their healthcare experience, maintain their dignity and feel able to disclose within a safe and caring environment. These results indicate that food insecurity screening in the antenatal setting is likely to have support from pregnant women and is urgently needed in the interest of promoting optimal nutrition for women and children. Patient Contribution: Pregnant women with lived experience of food insecurity were purposively sampled to obtain their insights regarding screening and support within a pregnancy healthcare setting. Member‐checking occurred following data collection, whereby all participants were offered the opportunity to review their interview transcript to ensure trustworthiness of the data. [ABSTRACT FROM AUTHOR]

Introduction: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. Methods: This is a qualitative descriptive study utilizing focus groups and one‐to‐one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. Findings: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. Conclusions: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. Patient or Public Contributions: An advisory group guided the research and was co‐chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day‐to‐day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives. [ABSTRACT FROM AUTHOR]

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

Introduction: Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community‐based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. Study Aim: The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Setting and Participants: Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Analysis: Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Results: Participants described the evolution of trust as a function of three contextual factors: (1) the set‐up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set‐up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Discussion: Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. Patient or Public Contribution: A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co‐author of this manuscript (Zoe Hughes). [ABSTRACT FROM AUTHOR]

Introduction: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo‐Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. Objective: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context. Method: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8–35. The resulting data were analyzed using thematic analysis. Results: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities. Conclusion: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know‐how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. Patient or Public Contribution: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Recently, different actors have intensified their efforts to make drug development more participatory. They have produced many frameworks, tools and dedicated fora, where patients are portrayed as relevant stakeholders to be involved throughout the entire drug development trajectory. To better understand what such participatory efforts entail, in this article, we investigate how patient representation is configured in drug development and what patients can engage as representatives in this field. Methods: This is a qualitative study based on the thematic analysis of 40 semistructured interviews with different stakeholders in the field and three patient engagement How‐To guides (HTGs) complemented by observations of two sessions of the Patient Engagement Open Forum (PEOF) and a patient expert training of the European Patients' Academy on Therapeutic Innovation (EUPATI). Findings: The emerging practices of patient engagement in drug development configure representation as hinging upon three types of knowledge—drug development knowledge, autobiographical knowledge and community knowledge—and a specific set of skills. We discern a new kind of representation based on these findings, termed 'knowledge‐based representation', which appears to more accurately describe how patients are expected to represent others in drug development. Conclusion: Even though knowledge‐based representation may be understood as an attempt to downplay the political aspects of representation in favour of its epistemic elements, the political processes involved in patient representation in drug development cannot be ignored. The extent to which reliance on knowledge‐based representation will contribute to democratic decision‐making is likely to depend on the resources needed to develop the types of knowledge relevant to representation work and on how these types of knowledge are determined. Patient or Public Contribution: Patient representatives and practitioners in the field of patient engagement (including 13 interviewees, representatives of EUPATI and HTG developers) gave feedback on the interpretation of the findings during a multistakeholder workshop we organised. We also sent an interviewee an extended draft and discussed it during an online meeting. Claudia Egher presented these findings at a PEOF session in June 2023, which further contributed to their validation. [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: There is limited research on what, when and how outcomes should be measured in psychological therapy trials in acute mental health inpatient wards. Objectives: This study aimed to consider what outcomes service users think are important to measure. Methods: This qualitative study explored the views of 14 participants, who had an inpatient admission within the last year, on outcomes of psychological therapies using semistructured interviews. Data were analysed using thematic analysis from a critical realist perspective with both inductive and deductive coding. Results: The 126 outcomes that were important to participants were mapped onto an established taxonomy of outcomes across different health areas and the socioecological framework to consider the wider context and help summarise the outcomes. Most of the outcomes were mapped to the intrapersonal and interpersonal level. In addition to the outcome mapping, three themes were constructed from the qualitative data: (1) I am not a problem I am a person, (2) Feeling cared for and loved, (3) What does getting better look like. Conclusions: Our results highlight the need for patient‐reported outcomes which are cocreated with service users, disseminating research and training on preventing dehumanising experiences, enhancing psychological safety and therapeutic relationships and improving access to psychological therapy. Patient or Public Contribution: The wider People with Personal Experience Involvement Committee at the University of Bath were consulted which included a focus group during the early planning stages. We also collaborated with a person with personal experience, at every stage of the research. This included developing our research question and aims, protocol, participant documents (e.g., information and debrief forms), advertisement and recruitment strategy, interview topic guide, the codes, the final themes and quotes and reviewing the manuscript. People with lived experience of being admitted to an acute mental health inpatient ward participated in our study. [ABSTRACT FROM AUTHOR]

Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way. [ABSTRACT FROM AUTHOR]

Background and aims Regulation of electronic cigarettes has moved to the top of the addiction policy agenda, as demonstrated by the recent focus across the United Kingdom on introducing age-of-sale restrictions. However, the views of those affected by such regulation remain largely unexplored. This paper presents the first detailed qualitative exploration of adolescents' perceptions of existing, and opinions about potential e-cigarette regulation. Methods Sixteen focus groups, including a total of 83 teenagers between the ages of 14 and 17 years, were conducted in deprived, mixed and affluent urban areas in Scotland and England between November 2014 and February 2015. Transcripts were imported into Nivivo 10, coded thematically and analysed. Results Participants critically considered existing evidence and competing interests in regulatory debates and demonstrated sophisticated understanding of the advantages and disadvantages of regulation. They overwhelmingly supported strong e-cigarette regulation and endorsed restrictions on sales to minors, marketing and e-cigarette use in public places. Concern about potential health harms of e-cigarette use and marketing increasing the acceptability of vaping and smoking led these adolescents to support regulation. Conclusions In focus group discussions, a sample of UK adolescents exposed to particular communications about e-cigarettes supported strict regulation of e-cigarettes, including banning sales to minors and use in indoor public areas. [ABSTRACT FROM AUTHOR]

Background Understanding decision-making about health service provision is increasingly important in an environment of increasing demand and constrained resources. Multiple factors are likely to influence decisions about which services will be provided, yet workforce is the most noted factor in the rural physiotherapy literature. This paper draws together results obtained from exploration of service level decision-making (SLDM) to propose 'conceptual' models of rural physiotherapy SLDM. Method A prioritized qualitative approach enabled exploration of participant perspectives about rural physiotherapy decision-making. Stakeholder perspectives were obtained through surveys and in-depth interviews. Interviews were transcribed verbatim and reviewed by participants. Participant confidentiality was maintained by coding both participants and sites. A system theory-case study heuristic provided a framework for exploration across sites within the investigation area: a large area of one Australian state with a mix of regional, rural and remote communities. Results Thirty-nine surveys were received from participants in 11 communities. Nineteen in-depth interviews were conducted with physiotherapists and key decision-makers. Results reveal the complexity of factors influencing rural physiotherapy service provision and the value of a systems approach when exploring decision-making about rural physiotherapy service provision. Six key features were identified that formed the rural physiotherapy SLDM system: capacity and capability; contextual influences; layered decision-making; access issues; value and beliefs; and tensions and conflict. Conclusions Rural physiotherapy SLDM is not a one-dimensional process but results from the complex interaction of clusters of systems issues. Decision-making about physiotherapy service provision is influenced by both internal and external factors. Similarities in influencing factors and the iterative nature of decision-making emerged, which enabled linking physiotherapy SLDM with clinical decision-making and placing both within the broader healthcare context. The conceptual models provide a way of thinking about decisions informing rural physiotherapy service provision. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives Internationally, health technology assessments ( HTAs) are ubiquitous drivers to health policy. Within Scotland, the Scottish Medicines Consortium undertakes the medicine review process. Input from clinical experts, involved in frontline care, is an integral component of the assessment process. This paper explores the relationship between the clinical experts and the HTA agency within Scotland to better understand what motivates expert clinicians to devote their time to the medicine review process with no remuneration. Methods Twenty-seven clinical experts from 16 different clinical specialties took part in one-to-one interviews at their place of work between October 2011 and March 2012. Data analysis was inductive and comprised the organization of data into a framework and a subsequent thematic analysis. Results Three distinct themes were identified: (1) recruitment, which identified two types of explanations for the experts' appointment: external justification (nominated by another) and internal justification (being recognized as an expert); (2) flexibility of the procedures, with experts able to determine their own response style and negotiate timelines; (3) health care systems, demonstrating that their affiliation to the health system underpinned the relationship and their motivation to be clinical experts. Conclusions The findings of this study provide insight into the elements important to clinicians who voluntarily contribute to HTA processes. Examination of these elements in the context of the organizational citizenship behavior literature provides a foundation on which to improve understanding of this relationship and sustain and improve clinical expert participation in an increasingly intensified clinical environment and within cash-limited HTA systems. [ABSTRACT FROM AUTHOR]

Background This paper reports part of the findings of a study which exposed sexual violence in schools for learners with mild intellectual disability in South Africa. Special attention was paid on factors contributing to such a problem. Methods Data were collected using focus groups and individual interviews with 16 learners with mild intellectual disability at two special schools in South Africa. This was followed by individual interviews with the school nurse and social worker, and an analysis of schools' books of incidents. Results Factors contributing to sexual violence at schools for learners with mild intellectual disability included: (i) peer pressure, (ii) concealment of reported incidents of sexual violence, (iii) unsupervised areas linked to schools and (iv) arranged relationships. Conclusion The following suggestions are put forth: (i) awareness programmes, (ii) sensitization of teachers about the consequences and prevention of sexual violence, (iii) boundaries within which the arranged relationship occurs, (iv) intensification of sexuality education and (v) supervision around the school premises. [ABSTRACT FROM AUTHOR]

In many countries today, digital technology and instant communication are embedded in children's everyday lives to the extent that their play frequently incorporates smartphones, the Internet and other technologies. In this paper, we explore the recent historical conditions within the New Zealand context that have increased the accessibility of these technologies and imbued them with particular meanings. We suggest that from a Foucauldian perspective, these technologies can be seen as a form of subtle disciplinary power using techniques of governmentality through which children's ways of thinking are shaped to benefit societal requirements of the current historical era. [ABSTRACT FROM AUTHOR]

Because nurses are at the forefront of end-of-life care, it is imperative that nursing students are prepared for this role upon graduation. Research suggests that many nursing students are unprepared to deliver compassionate and quality end-of-life care. There have been many attempts to address this need; one emerging method is end-of-life care simulation. This paper explores the experiences of 18 undergraduate nursing students of end-of-life care simulation. Participants' stories were obtained via observation during end-of-life care simulation, audio-recorded post simulation debriefing, and semi-structured interviews. Using Clandinin and Connolly's three dimensions of Narrative Inquiry (temporality, spatiality, and sociality) participants' stories reflected convergence of time, place, and person. Findings revealed three distinct plotlines along a time continuum, specifically surrounding time of death: (i) 'The privilege of end-of-life care;' (ii) 'Witnessing death as surreal;' and (iii) 'The honor of providing after-death care.' Participants' narratives suggest that end-of-life care simulation is an important means of preparing students for clinical end-of-life care experiences. This has implications for nursing educators wishing to consider simulation in end-of-life care education. [ABSTRACT FROM AUTHOR]

In the course of a phenomenological study that explored the experiences of family members during their older loved one's delirium, a range of delirium experiences depicted in artistic, creative, and linguistic media were reviewed. The search for, and compilation of, media sources for reflection during data analysis is described in this paper. In doing so, the researcher reveals how attentiveness and openness to varied depictions of lived experiences, as well as a valuing attitude toward challenging subjective perspectives, can enhance researcher reflexivity and appreciation of interpretive meanings. Turning to media depictions of delirium offered alternative perspectives on the experience. It challenged the researcher's assumptions, enhanced phenomenological reflection, promoted critique of evolving interpretations, and suggested meanings that might not have otherwise been realized. The approach used is a potent, although often overlooked, way to differentiate the nature of phenomena shared through lived experience data. Media-based methods and their use in phenomenology continue to be explored. Illustrations of how to integrate media sources, as well as discussion about the benefits and alternatives to more common uses, are needed. [ABSTRACT FROM AUTHOR]

This paper explores ideas of symbolic violence inherent in the research encounter (Bourdieu 1999). After defining symbolic violence and how the concept enters into domestic violence and abuse ( DVA) research, we discuss the challenges arising from a ( DVA) survivor taking on the role of interviewer in a qualitative study nested within a UK primary care based trial: IRIS (Identification and Referral to Improve Safety). KS, a survivor of DVA, conducted interviews with 12 women who had been referred to a domestic violence agency by primary care clinicians taking part in the IRIS trial in two UK cities (Bristol and east London) during 2009. Field notes were kept during all of the research meetings with KS and these were included in analysis. Our analysis maps the research pathway of 'non-violent communication' and discusses the role of social symmetry and proximity in the research encounter. We conclude that while a welcoming disposition, empathy and active listening are all generic skills to qualitative research; if a researcher can enter fieldwork with a claim of social proximity and symmetry, their use of these generic skills is enhanced through a process of shared objectification and empowerment talk. We explore the limitations of social proximity, its relationship to feminist and anthropological theories of 'insider' research and its relevance to primary care research. [ABSTRACT FROM AUTHOR]

Background In Australia, Aboriginal children experience significantly poorer health outcomes compared with non-Aboriginal children. Health policies aimed at improving Aboriginal health outcomes include interventions in the early childhood period. There is a need for government health services to work in partnership with Aboriginal people and other services to achieve the highest level of health possible for Aboriginal children, who often require a range of services to meet complex needs. Aim This paper describes the views of service providers on how paediatric outreach services work in partnership with other services, Aboriginal families and the community and how those partnerships could be improved to maximize health outcomes for children. Methods In-depth, semi-structured interviews and focus groups were conducted with managers and service providers over a 6-week period in 2010. The views and suggestions of participants were documented and a thematic analysis was undertaken. Results and Discussion Analysis of two focus groups with seven service providers and five individual interviews with service managers resulted in the identification of four themes: (i) using informal and formal ways of working; (ii) cultivating effective relationships; (iii) demonstrating cultural sensitivity; and (iv) forging strong leadership. Use of formal and informal approaches facilitated effective relationships between service providers and Aboriginal families and communities. Partnerships with the community were founded on a culturally appropriate model of care that recognized a holistic approach to health and wellness. Leadership emerged as an essential component of effective partnerships, cultivating the ethos of the workplace and creating an environment where collaboration is supported. Conclusion Culturally appropriate child health services, which utilize effective relationships and employ a range of informal and formal collaboration with other services and community members, are well positioned to implement health policy and improve access to services for Aboriginal children with better health outcomes as a result. [ABSTRACT FROM AUTHOR]

This qualitative study explores psychodynamic therapists' experiences associatedwith unexpected encounters with their patients outside the clinical setting. Information was collected using a semi-structured interview protocol from 10 experienced practitioners in Poland and examined according to the interpretative phenomenological analysis principles. Four overarching themes are discussed in the paper. Results show that accidental encounters often challenged practitioners' privacy, led to involuntary self-disclosure (causing discomfort and distress) and required re-negotiating roles and boundaries in the new context. Various coping strategies were also identified and analysed, including withdrawal, anticipation and avoidance, as well as using community support. Findings are discussed in terms of their implications for mental health professionals and psychotherapy training. [ABSTRACT FROM AUTHOR]

An international nurse shortage, tightening fiscal constraints, and increased service demands have seen health systems increasingly turn to employing assistants in nursing ( AIN) as a cost-effective means to meet demand. This paper describes social positioning from the perspective of 11 AIN who were employed to work in specialist mental health settings in a metropolitan health service in Sydney. Data was collected by means of semistructured interviews. Interview questions encouraged AIN to explore their experience with reference to positioning within the service, role perception, role development, staff relationship, and role satisfaction. Thematic analysis was utilized to generate themes and explore meaning within the data. The following themes emerged: role definition and clarity; socialization and adaptation; and enhancing education. Analysis suggests that whilst AIN were integrated into mainstream service, the scope of activities or role remains geographically variable and inconsistent. Encouragingly, as AIN became familiar with their work environments and teams, they considered themselves to be of value and were able to play a meaningful role. A desire for learning and a need for continuing education also emerged as a primary theme. Findings from the data suggest that AIN in the mental health setting remain a novel and, to some extent, poorly utilized resource. [ABSTRACT FROM AUTHOR]

Aim Evaluation or assessment of competence is an important step to ensure the safety and efficacy of health professionals, including dietitians. Most competency-based assessment studies are focused on valid and reliable methods of assessment for the preparation of entry-level dietitians, few papers have explored student dietitians' perceptions of these evaluations. The present study aimed to explore the perceptions of recent graduates from accredited nutrition and dietetics training programs in Australia. It also aimed to establish the relevance of competency-based assessment to adequately prepare them for entry-level work roles. Methods A purposive sample of newly graduated dietitians with a range of assessment experiences and varied employment areas was recruited. A qualitative approach, using in-depth interviews with 13 graduates, was undertaken. Graduates were asked to reflect upon their competency-based assessment experiences as a student. Data were thematically analysed by multiple authors. Results Four themes emerged from the data analysis: (i) transparency and consistency are critical elements of work-based competency assessment; (ii) students are willing to take greater responsibility in the assessment process; (iii) work-based competency assessment prepares students for employment; and (iv) the relationship between students and their assessors impacts student experience and assessment performance. Conclusions Understanding this unique perspective of students can improve evaluation of future health professionals and assist in validating competency-based assessment approaches. [ABSTRACT FROM AUTHOR]

Aim The hospital environment as a workplace has undergone rapid changes over the last 50 years. Despite this, there has been very little research exploring how dietitians working in hospitals perceive their workplace. Moreover, previous studies in this area have focused predominantly on examining the North American experience of dietitians. Only a handful of previous studies have investigated the experiences of Australian dietitians at different stages of their careers. Therefore this study, in part, addresses a gap in the extant literature by examining how New South Wales ( NSW) public-hospital dietitians perceive their workplace and its influence on their ability to function as healthcare professionals. Methods In 2011, 32 in-depth interviews were conducted with dietitians from 11 NSW public hospitals. Participants were selected from four career stages: new graduates, mid-career, specialists and managers. Data from the interviews were analysed through a grounded theory approach. Results Data analysis revealed that dietitians sought validation of their work experience from five sources within the workplace. In this paper, these five sources have been depicted as a conceptual model labelled the ' Five Sources of Value'. The five sources identified were: acquisition of knowledge; relationships with others; work culture; role clarity; and personal attributes. This study also found the relative importance of these values changed according to the career stage of the individual dietitian. Conclusions The retention and engagement of staff within a hospital environment is an ongoing issue for dietetic managers. The ' Five Sources of Value' identified through this study and their relative influence at different career stages may assist managers in developing workplace strategies that addresses the major areas of concern for many staff. As a result of the qualitative nature of this exploratory study, the generalisability of the findings are limited. To address this limitation, future research may follow a more quantitative approach. [ABSTRACT FROM AUTHOR]

Career research has focused on the changing structures of careers, mainly in the private sector. Recent literature on employment patterns in the public sector suggests that career structures are evolving, gradually moving away from their signature traditional structures to contemporary ones. However, empirical evidence of this change is scarce and inconclusive. This qualitative study examines the changes currently unfolding in the career structure of the civil service by eliciting the experiences and views of senior Foreign Offices (FOs) staff in four countries: 198 state ambassadors from the United States, the United Kingdom, Israel, and Denmark were interviewed about their career trajectories. The data were analyzed using a thematic analysis framework. The findings revealed a gradual breakdown of the structures and policies that support traditional careers, and the emergence of new principles and practices that characterize contemporary careers. However, as they were captured midway through the process of change, all FOs display a combination of traditional and contemporary career structures at this point. The findings offer unique insights into the drivers of this evolution and highlight some of the consequences. [ABSTRACT FROM AUTHOR]