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Background: Primary care practices are responding to calls to incorporate patients' social risk factors, such as housing, food, and economic insecurity, into clinical care. Healthcare likely relies on the expertise and resources of community-based organizations to improve patients' social conditions, yet little is known about the referral process.Objective: To characterize referrals to community-based organizations by primary care practices.Design: Qualitative study using semi-structured interviews with healthcare administrators responsible for social care efforts in their organization.Participants: Administrators at 50 diverse US healthcare organizations with efforts to address patients' social risks.Main Measures: Approaches used in primary care to implement social needs referral to community-based organizations.Results: Interviewed administrators reported that social needs referrals were an essential element in their social care activities. Administrators described the ideal referral programs as placing limited burden on care teams, providing patients with customized referrals, and facilitating closed-loop referrals. We identified three key challenges organizations experience when trying to implement the ideal referrals program: (1) developing and maintaining resources lists; (2) aligning referrals with patient needs; and (3) measuring the efficacy of referrals. Collectively, these challenges led to organizations relying on staff to manually develop and update resource lists and, in most cases, provide patients with generic referrals. Administrators not only hoped that referral platforms may help overcome some of these barriers, but also reported implementation challenges with platforms including inconsistent buy-in and use across staff; integration with electronic health records; management and prioritization of resources; and alignment with other organizations in their market.Conclusion and Relevance: Referrals to community-based organizations were used in primary care to improve patients' social conditions, but despite strong motivations, interviewees reported challenges providing tailored and up-to-date information to patients. [ABSTRACT FROM AUTHOR]

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

PURPOSE Consent processes are critical for clinical care and research and may benefit from incorporating digital strategies. We compared an electronic informed consent (eIC) option to paper consent across four outcomes: (1) technology burden, (2) protocol comprehension, (3) participant agency (ability to self-advocate), and (4) completion of required document fields. METHODS We assessed participant experience with eIC processes compared with traditional paper-based consenting using surveys and compared completeness of required fields, over 3 years (2019-2021). Participants who consented to a clinical trial at a large academic cancer center via paper or eIC were invited to either pre-COVID-19 pandemic survey 1 (technology burden) or intrapandemic survey 2 (comprehension and agency). Consent document completeness was assessed via electronic health records. RESULTS On survey 1, 83% of participants (n = 777) indicated eIC was easy or very easy to use; discomfort with technology overall was not correlated with discomfort using eIC. For survey 2, eIC (n = 262) and paper consenters (n = 193) had similar comprehension scores. All participants responded favorably to at least five of six agency statements; however, eIC generated a higher proportion of positive free-text comments (P < .05), with themes such as thoroughness of the discussion and consenter professionalism. eIC use yielded no completeness errors across 235 consents versus 6.4% for paper (P < .001). CONCLUSION Our findings suggest that eIC when compared with paper (1) did not increase technology burden, (2) supported comparable comprehension, (3) upheld key elements of participant agency, and (4) increased completion of mandatory consent fields. The results support a broader call for organizations to offer eIC for clinical research discussions to enhance the overall participant experience and increase the completeness of the consent process. [ABSTRACT FROM AUTHOR]

Higher education institutions are uniquely placed to introduce emotional coping skills to promote resilience in pre-registration nurses in order to reduce anxiety and increase confidence before they enter clinical placement for the first time. In this qualitative study, we will explore the use of a 360-degree video in developing skills for coping. The participants will be mental health nursing students. We will develop a 360-degree video in collaboration with a mental health service user. All participants will watch the video. A sub-group will receive a supportive clinical supervision discussion within a cognitive reappraisal/solution-focused/VERA framework. We will record the experiences of the participant to explore: (1) how students felt about the use of 360-degree video, as an education tool to build skills of resilience; (2) whether the students involved felt more confident and less anxious about the situation in the video as a result of participating in the cognitive reappraisal/solution-focused/VERA supervision discussion. [ABSTRACT FROM AUTHOR]

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aging causes the reduction in physical and physiological strength and an increase in the odds of affliction with chronic physical and mental diseases ultimately affecting the quality of life (QoL). So far, several primary studies have been conducted on the impact of religious-spiritual education and care on the QoL of the elderly. However, to the best of our knowledge, a study that compiles and represents these findings in a published paper is lacking. Therefore, the current study conducted a systematic review and meta-analysis to investigate the effect of religious-spiritual education and care on the QoL of the elderly population. To access studies related to the aim of the study, SID, MagIran, IranMedex, IranDoc, Embase, PubMed, Scopus, Web of Science, and Google Scholar databases were searched. The search was done using relevant and validated keywords with MeSH/Emtree without time limitations until December 2021. The qualitative appraisal of the papers was done using the JBI checklist. To estimate the heterogeneity of studies, I2 index was used, and to combine the data and carry out a meta-analysis, Random Effects model was used. In the primary research, 1065 studies were found. The omission of the redundant cases led to a total number of 12 papers with a sample size of 317 in the intervention group and 321 in the control to be included in the meta-analysis. After the intervention, the mean score of QoL showed a significant increase by 1.42 ± 0.31 with a Confidence Interval of 95% (P<0.001). Meta-regression results showed that the increase in the year of conducting the study, and the number of intervention sessions, that the standardized mean difference had a decreasing trend, and that with the increase in the average age of the elderly, there was a rising trend (P<0.001). Therefore, it seems that the application of religious-spiritual education and care could be part of a program to improve the QoL of the elderly. [ABSTRACT FROM AUTHOR]

The discourse of deservingness has been mobilised against certain groups in the UK society navigating UK labour markets, among them refugees and asylum seekers. These discourses, leading to the stigmatisation of the unemployed are coupled with an emphasis on the importance of individuals taking responsibility to develop their 'employability'. Little attention has been paid to scrutinise the contrast between the deservingness rhetoric and policy making with the actual conditions newcomers, and in particular refugees and asylum seekers, are confronted with when seeking employment. Our paper fills such a gap by indicating key contradictions at the heart of labour market integration in the UK. On the one hand, the emphasis on deservingness is coupled with policy discourses that construct an environment shaped by welfare and labour market chauvinism. On the other hand, the policy architecture is fundamentally flawed in a number of ways in terms of the support mechanisms necessary to ensure that newcomers can successfully integrate into the labour market. [ABSTRACT FROM AUTHOR]

Introduction: Research with young people (YP) is ethically challenging and bound in a complex maze of issues relating to power, voice and representation. Such sensitivities mean that the challenges raised in researching marginalised YP are often hard to navigate. This paper reports on research carried out with YP to explore links between mental health, school exclusion and involvement in criminal gangs. It aims to provide a practical guide to negotiating some of the methodological and ethical challenges experienced. Method: In‐depth interviews conducted with 28 YP (aged 14–24 years) who were gang involved or seen to be at risk of gang involvement. Research was conducted in youth clubs, alternative provision and youth justice settings. Results: Observations/Reflections We reflect on how navigating ethics can create barriers to involving YP as primary informants in research. We consider why it is important to overcome these hurdles and how public engagement work with recognised gatekeepers and the use of creative interview methods can facilitate meaningful encounters, where YP feel able to share valuable insights into their lives. Conclusion: Alongside a number of specific learning points, the paper reflects on theories behind research with YP, including the need for recognition of power imbalances and reflexivity. It concludes with thoughts on the practical realities of achieving meaningful participation or an 'authentic voice' with marginalised groups and the importance of this in informing policy and practice. Patient or Public Contribution: The focus of this work was to collect experiences of YP who are recognised as gang‐involved or at risk of being so, with a view to informing health and education policies. The scoping study for the project involved extensive public engagement work with YP exploring and trialling suitable methods of accessing, recruiting and ultimately interviewing this target group. This is central to the discussion within the body of the paper. [ABSTRACT FROM AUTHOR]

Actual accounts of the experiences of Aboriginal and Torres Strait Islander peoples since colonization remain largely misunderstood and misrepresented within Australian education systems and the broader social consciousness. Culturally sensitive practice and ethnic diversity are challenging topics to teach social work students when truth-telling is absent. Social workers need to develop an understanding of intergenerational trauma experienced by Aboriginal and Torres Strait Islander peoples, critically reflect on perpetuated stereotypes, and confront internalized beliefs about peoples of diverse ethnic and cultural identities in preparation to work respectfully with Indigenous communities. A course focused on building students' knowledge and skills for culturally responsive practice is described in this paper, along with suggestions for enhancing teaching and learning. The paper argues for the importance of truth-telling about Australia's continuing racism in social work education to create cultural safety for service users. [ABSTRACT FROM AUTHOR]

As previous research has observed, medical students and physicians alike confront vast amounts of knowledge in their education and practice, such that no one clinician can know everything there is to know about biomedicine. Even before clerkships, medical students learn to cope with this impossibility by prioritizing certain information based on its perceived utility for exams and clinical practice. Many factors can shape this process, including teamwork, wherein individual medical students rely on one another to address gaps in knowledge at the level of the group. This paper will draw on qualitative data from two allopathic medical schools in the American Midwest to demonstrate that peer-to-peer learning, a widely utilized pedagogical modality in North American medical schools, is amongst the earliest places where future physicians learn how to rely on their peers in the profession as they make choices about what to know and what not to know about biomedicine: cultivating a culture of "intraprofessionalism" between students with different knowledges and values, as they prepare to enter the same profession. The paper will also consider how differences in the student populations at two field sites impact intraprofessional development. Drawing on scholarship of peer-based learning strategies and the sociology and anthropology of medical education, the authors argue that peer-to-peer learning is a key site in the professional socialization of medical students toward the effective management of medical knowledge. [ABSTRACT FROM AUTHOR]

Aims: To explore the nature of interactions that enable older inpatients with cognitive impairments to engage with hospital staff on falls prevention. Design: Ethnographic study. Methods: Ethnographic observations on orthopaedic and older person wards in English hospitals (251.25 h) and semi‐structured qualitative interviews with 50 staff, 28 patients and three carers. Findings were analysed using a framework approach. Results: Interactions were often informal and personalised. Staff qualities that supported engagement in falls prevention included the ability to empathise and negotiate, taking patient perspectives into account. Although registered nurses had limited time for this, families/carers and other staff, including engagement workers, did so and passed information to nurses. Conclusions: Some older inpatients with cognitive impairments engaged with staff on falls prevention. Engagement enabled them to express their needs and collaborate, to an extent, on falls prevention activities. To support this, we recommend wider adoption in hospitals of engagement workers and developing the relational skills that underpin engagement in training programmes for patient‐facing staff. Implications for Profession and Patient Care: Interactions that support cognitively impaired inpatients to engage in falls prevention can involve not only nurses, but also families/carers and non‐nursing staff, with potential to reduce pressures on busy nurses and improve patient safety. Reporting Method: The paper adheres to EQUATOR guidelines, Standards for Reporting Qualitative Research. Patient or Public Contribution: Patient/public contributors were involved in study design, evaluation and data analysis. They co‐authored this manuscript. [ABSTRACT FROM AUTHOR]

Background: The National Health Service (NHS) and general practice are increasingly adopting digital services. These services can impact both positively and negatively upon patient experiences, and access to digital services is not equal amongst all groups. Within a wider project examining digital facilitation (the Di-Facto study) our team conducted a patient survey amongst English primary care practices aiming to investigate patient views of what supports uptake and use of web-based services. This paper reports on the analysis of the free-text responses from the patient survey. Methods: The Di-Facto patient survey was distributed to practices in eight clinical commissioning groups (CCGs) in England between 2021–2022. We examined free-text responses to two questions relating to access to primary care web-based and support for web-based services. We used qualitative reflexive thematic analysis based on a six-stage process to analyse responses. Results: Of the 3051 patients who responded to the Di-Facto survey, 2246 provided a free-text response. We present our findings in two major themes: systems and structures and their impact on use of web-based services, and 'what works for me', a description of how respondents described what worked, or did not work in terms of their interactions with web-based services. Respondents described how the technology, such as poor practice website design, confusion over multiple digital apps, data security and concerns about eConsultation offerings impacted on use of web-based services. Respondents described practice level barriers, such as a lack of or inconsistent provision, which prevented optimal use of web-based services. Respondents described personal and technical barriers that impacted on their use of digital services, and described which web-based services worked well for them. Respondents felt that web-based services were not a replacement for face-to-face interactions with a doctor. Conclusions: This analysis of free-text responses from a large patient survey highlights the system, practice, and person level barriers and facilitators to use of digital services in primary care. With an increasing push towards digital solutions in NHS primary care, practices should consider the design, rollout and communication of their web-based services to support patient access. [ABSTRACT FROM AUTHOR]

Resilience is an important attribute of incident management teams (IMTs) for managing disasters. Previous research on resilience of IMTs has focused on comparing work-as-imagined (WAI) and work-as-done (WAD) but predominantly used narrative analyses which limited comparisons between IMTs. This paper presents a novel Interaction Episode Analysis (IEA) method to identify the IMT's WAI and WAD episodes by analyzing dynamic interactions that occur between different roles that carry out information management tasks. Observations and audio--visual recordings of two high-fidelity IMT exercises were conducted to capture WAD episodes, and semi-structured interviews with experts elicited corresponding WAI episodes. Quantitative analyses using five interaction-based measures were conducted to detect differences of the WAD episodes between two IMTs. Next, qualitative analyses were focused on identifying reasons why such differences have occurred by comparing the gaps between WAI and WAD episodes. Some of the reasons for WAI-WAD gaps included the non-occurrence of critical interactions that were expected and occurrence of unexpected interactions between IMT members. This paper also identifies cases of preparatory, proactive, and reactive performance adjustment that characterizes IMT resilience. The IEA method shows promise for investigating how and why the gaps between WAI and WAD in IMTs occur. With the identification of these gaps, future research can be conducted to reconcile the gaps between WAI and WAD episodes, and thus enhance resilience of IMTs in future disasters. [ABSTRACT FROM AUTHOR]

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226). [ABSTRACT FROM AUTHOR]

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [ABSTRACT FROM AUTHOR]

This paper studies the creation of organisations via people processing (Prottas 1979), taking as its case study a new and developing family centre that aims to offer various social and health services under the same roof. The study draws on ethnomethodology, meaning that organisations are herein understood as being created and continuously produced in and through interaction. The data consist of 11 audio-recorded meetings from the centre's steering group, which includes managers from different service fields and welfare agencies. In analysing the creation of the centre through people processing, this paper scrutinises how the meeting participants orient themselves toward and produce the centre's client categories, what characteristics they connect to these categories, and how they do boundary work regarding which categories belong or not to the centre's target groups. The meeting participants produce three different family based client categories. The first category is ordinary families, those without any special problems who just pop into the centre to see other people. These families are distinguished from the second category, best matching families, who are defined as having problems that would benefit from the integrated, multi-professional work conducted at the centre. The third category, families with too specific needs, refers to client groups whose service needs are at least partly beyond the centre's expertise and resources. The centre needs these people-processing activities to make sense of its mission, clients and co-partners; this ongoing reasoning process allows the emerging centre to exist and find its place in the local service system. [ABSTRACT FROM AUTHOR]

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

Accessible Summary: What the paper adds to existing knowledge?: Personality disorder is a serious mental health condition affecting up to 52% of psychiatric outpatients and 70% of inpatients and forensic patients. People with a diagnosis of personality disorder have higher morbidity and mortality than those without.Service users and carers reported a lack of training for staff in the management of individuals with a diagnosis of personality disorder, particularly with regard to self‐harm and suicidal behaviours.Staff burnout creates barriers to compassionate person‐centred care for individuals with a diagnosis of personality disorder as staff struggled to accommodate the nature of the presentation when under significant emotional, psychological and professional strain caused by understaffing and lack of support. What are the implications for practice?: This paper adds new knowledge by informing services of ways to improve care provision from the perspectives of both carers and service users.A more holistic and less medicalised approach to the treatment of problems associated with a diagnosis of a personality disorder should be adopted, and personality disorder training introduced for all healthcare practitioners, to improve patient outcomes. Introduction: There is limited understanding of the experience of people with complex mental health (CMH) needs, including those with a diagnosis of personality disorder (PD) and carers of those individuals. Little is known about carers of those in inpatient forensic settings, yet it has been identified that they may have additional needs when compared to general carers. Research highlights that community carer support services were perceived as inadequate and out‐of‐area placements were described as putting an added strain on ability to support loved ones. Understanding PD within a population of people with CMH needs and how a diagnosis described as PD impacts on care and treatment experience is vital to providing high‐quality care. Aim: To evaluate the care experience of service users and carers with lived experience of a diagnosis of PD and out‐of‐area placements. Method: Semi‐structured interviews were conducted with six service users and four carers to explore the experiences and perspectives of people with a diagnosis of PD. Interviews were audio recorded and thematically analysed. Results: Four interrelated themes were developed; Influence of a diagnosis of PD on Staff, Early and Appropriate Intervention, Recognition of the Individual and Training and Knowledge of people with a diagnosis of PD. Discussion: Anti‐stigma interventions for staff, research on care provision and structural changes to services including more evidence‐based therapy for individuals with a diagnosis of PD may help reduce disparate treatment and improve prognosis for recovery. Implications for Practice: This paper informs services of ways to improve care provision from the perspective of carers and service users. A more holistic and less medicalised approach to the treatment of problems associated with diagnoses of PD should be adopted, and PD training for all healthcare practitioners to improve patient outcomes. [ABSTRACT FROM AUTHOR]

Background: The HeLP-GP trial aimed to increase the capacity of practice nurses to deliver weight management to overweight and obese patients through an intervention comprising a health check, a lifestyle app and/or telephone coaching. This paper describes implementation through the lens of organisational readiness with emphasis on the role of the practice nurse. Methods: Routinely collected mixed method research data including practice surveys, field notes, and diaries and process data were mapped against the domains: motivation to implement, general capacity and intervention-specific capacity. Results: Organisational readiness varied considerably, particularly the domain of intervention-specific capacity. Practice nurse turnover negatively impacted the implementation, affecting half of the practices. We observed a general lack of practice-based support for intervention delivery, and varying levels of interest, skill and confidence in delivering the intervention. Nurses struggled to complete the research and intervention tasks in a timely way. Conducting risk assessments and referring to coaching were generally not problematic; however, we noted lower confidence levels with the lifestyle app and instructing patients to use it. Conclusions: We found a lack of general 'readiness' inherent in the nursing role, particularly related to their capacity to complete intervention tasks and practice-level support to implement the intervention. For nurses in general practice to fulfil their potential in supporting patients to reduce risk and adopt healthier life choices, our study indicates that more could be done to improve their workforce positioning and remuneration, which may, in turn, improve continuity of care, retention and individual motivation. General practice nurses play a key role in delivering prevention. This paper describes the experience of implementing a nurse-led obesity intervention in Australian general practice through the lens of organisational readiness. Our results suggest that for nurses in general practice to fulfil their potential in supporting patients to reduce risk and adopt healthier life choices, more could be done to improve their workforce positioning and remuneration, which may, in turn, improve continuity of care, retention and individual motivation. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to develop a model to help parents cope with decisional conflict. Background: Parents of children with congenital heart defect experience decisional conflict when they are uncertain about treatment decisions for their child, which may lead to delay in seeking care or distress over the decision made. Design: Correlational design with model building and data triangulation was used. Methods: Data were collected through surveys and interviews with a consecutive sample of 221 parent respondents from June to December 2018. Structural equation modelling and qualitative data analysis were used. Results: Lower decisional conflict was seen in parents with higher income, more nurse support and physician risk communication. Time delay for surgery was correlated with the child's age, social service coverage, and social support. Decisional conflict mediated the influence of income, nurse support and physician risk communication on satisfaction with decision. Based on model fit parameters, the emerging model is a good and parsimonious model of decisional conflict. The overall theme, 'Deciding for Surgery: What Matters Most', described the processes parents went through in making treatment decisions. Conclusion: Nurses may help parents feel more certain, less conflicted, and more satisfied with their decision by addressing factors including knowledge gaps, personal values, available support, and resource access. Summary statement: What is already known about this topic? Decisional conflict occurs when parents are uncertain of the best action for their child because treatment options entail risks for undesirable outcomes, value compromise, unclear prognosis, or anticipated regret over the decision.Professional support, information, and communication are vital to parents' decision‐making process.Child, parent, and support factors may influence parent treatment decisions in varied paediatric conditions. What this paper adds? Child's age at the time of decision‐making had an effect on the delay in surgery. However, assisting parents to weigh their options and focus on personal values allowed them to make their treatment decision.Low income, costly health services, and bureaucratic processes impeded the timely availment of surgery. Healthcare reforms that provide a system of government funding, streamlined health structure, and social insurance may be looked into.Family support weighed in on the parents' decision to delay surgery for fear of blame or guilt. Providing relevant information enabled parents to make a choice and stand by their decision regardless of the outcome. The implications of this paper: Modelling provides a framework to identify which factors are more important and how they interact to affect decision‐making. It may be used as an approach to find solutions to clinical problems for groups with different diagnoses.Though nursing support, information, and communication are essential, a more holistic family nursing care approach may be considered to assist parents to make appropriate treatment decisions for their child.Familiarity with the healthcare system may equip nurses to aid parents in processing available healthcare funding and dealing with financial uncertainty affecting decisions for their child's treatment. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to investigate the impact of bronchial asthma‐related factors on the emotional well‐being of adolescents with bronchial asthma and their primary caregivers. Background: Bronchial asthma is a common chronic disease in childhood and adolescence that can have a psychological impact on both patients and their primary caregivers. Methods: The study used a cross‐sectional design and included 150 patient–caregiver dyads diagnosed with bronchial asthma, aged between 12 and 16 years and collected between 2018 and 2020. It assessed the emotional adjustment of both patients and caregivers and recorded variables related to the disease. Qualitative and quantitative analyses were conducted to perform statistical analyses. Results: Caregivers had higher anxiety and depression scores than patients. Good adherence to treatment was necessary for the emotional adjustment of the dyad. Controlled asthma, good adherence to treatment and a reduction in medical treatment were the primary predictors of emotional adjustment. Conclusions: The study highlights the importance of assessing anxiety and depression levels in both patients and caregivers because the presence of these symptoms can lead to the misuse of medication, inadequate inhalation techniques, the omission of medication and reduced confidence in controlling asthma symptoms. Summary statement: What is already known about this topic? Certain variables related to asthma, such as its degree of control, severity, duration of diagnosis and adherence, have been linked to adjustment to the disease by the adolescent–caregiver dyad. What this paper adds? Caregivers had higher anxiety and depression scores than patients.Good adherence to treatment was necessary for the emotional adjustment of the dyad.Controlled asthma, good adherence to treatment and a reduction in medical treatment were the primary predictors of emotional adjustment. The implications of this paper: The study evaluated the variables in combination to identify risk and healthier profiles in the dyad's emotional adjustment and identified variables related to the disease most associated with emotional adjustment to the disease in the dyad.Identifying the risk and health profiles in emotional adjustment in both the adolescent and his or her caregiver may be used to mitigate future consequences related to poor adjustment to asthma.Knowledge of these variables allows health professionals to design psychoeducational programmes to ensure better adaptation to the disease. [ABSTRACT FROM AUTHOR]

Purpose: Although batterers' intervention programs (BIPs) constitute an important part of the coordinated response to intimate partner violence (IPV) and contribute to increasing the perpetrators' accountability and keeping victims safe, the effectiveness of these programs is still debated. Only recently has the focus of these debates shifted away from researching outcomes by measuring overall program effectiveness toward specific qualities of interventions across program models that may be effective for the distinct client (Babcock et al., Clinical Psychology Review,23(8), 1023–1053, 2004; Zarling et al., Psychology of Violence,9(3), 257–266, 2019). The discussion on the practical implementation of BIPs was supplemented by various significant concepts emerging from new empirical findings, such as differential treatment, motivational interviewing, and effective facilitator–client alliances (Hamel et al., Partner Abuse,11(4), 387–414, 2020; Holtrop et al., Journal of Interpersonal Violence,32(8), 1267–1290, 2017). This paper aimed to address some of the abovementioned concepts by identifying challenges that arise during the implementation of BIPs in Lithuania. Methods: Using qualitative data from semi-structured interviews and focus group discussions with BIPs facilitators, BIPs attendees, and various stakeholders, the paper discusses how to contribute to more effective BIPs outcomes. Results: According to this study, the process of implementing BIPs in Lithuania should be systematized by incorporating existing instruments, such as motivational interviewing, risk-based assessment, and differential treatment, evidence-based programs focused on different theoretical approaches, and forms of implementation. Conclusion: The study found that the consistency and integrity of the entire BIP implementation process should be prioritized, and institutional cooperation in Lithuania needs to be improved to achieve a successful coordinated response to intimate partner violence. [ABSTRACT FROM AUTHOR]

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

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

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

Within qualitative research, much can be learned from the influence of researcher positionality on the research process. Reflecting upon ethnographic fieldwork undertaken for a doctoral study, this paper explores how researcher positionality not only shapes research motivations but also situates the researcher and the 'researched', impacting how data is created and interpreted. There is a long history of engaging with positionality in qualitative research, however, oftentimes this engagement is purely descriptive, providing a 'shopping list' of characteristics and stating if these are shared or not with participants. It is important for engagement with reflexivity to go beyond providing a 'shopping list' of positionality statements to develop deeper discussions about the fluidity of positionality across the research process. Using the previously established concept of 'kitchen table reflexivity', I reflect on how talk allows researchers to outline shifts and adaptability in positionality as research progresses. I expand this concept to argue that kitchen table reflexivity can occur in conversations during fieldwork with participants, utilising a range of in/visible tools at the researcher's disposal. For example, the spaces between fieldwork encounters, the 'waiting field', is often where observations and informal discussions with participants take place. Using fieldnotes and interview data, this paper outlines how positionality fluctuates and interweaves with the theoretical, methodological, and analytical approach taken. The paper concludes by restating the importance of meaningful engagement with positionality throughout qualitative research, in order to avoid static and hollow positionality statements. [ABSTRACT FROM AUTHOR]

This meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis. Five electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence. Thirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis. Our synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis. The period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding. Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions. Adaptive coping skills and support resources could contribute to better adjustment following diagnosis. Support interventions should be tailored to the needs of newly diagnosed people. [ABSTRACT FROM AUTHOR]

In this paper, we present findings from a three-year research project funded by the US Institute of Museum and Library Services that examined how advanced broadband measurement capabilities can support the infrastructure and services needed to respond to the digital demands of public library users across the US. Previous studies have identified the ongoing broadband challenges of public libraries while also highlighting the increasing digital expectations of their patrons. However, few large-scale research efforts have collected automated, longitudinal measurement data on library broadband speeds and quality of service at a local, granular level inside public libraries over time, including when buildings are closed. This research seeks to address this gap in the literature through the following research question: How can public libraries utilize broadband measurement tools to develop a better understanding of the broadband speeds and quality of service that public libraries receive? In response, quantitative measurement data were gathered from an open-source broadband measurement system that was both developed for the research and deployed at 30 public libraries across the US. Findings from our analysis of the data revealed that Ookla measurements over time can confirm when the library's internet connection matches expected service levels and when they do not. When measurements are not consistent with expected service levels, libraries can observe the differences and correlate this with additional local information about the causes. Ongoing measurements conducted by the library enable local control and monitoring of this vital service and support critique and interrogation of the differences between internet measurement platforms. In addition, we learned that speed tests are useful for examining these trends but are only a small part of assessing an internet connection and how well it can be used for specific purposes. These findings have implications for state library agencies and federal policymakers interested in having access to data on observed versus advertised speeds and quality of service of public library broadband connections nationwide. [ABSTRACT FROM AUTHOR]

Background: Online learning has grown significantly during the past two decades, and COVID‐19 pandemic has expedited this process. However, previous research has shown how academic dishonesty is more prevalent under these modalities. Therefore, there is the challenge of performing trustworthy remote assessments, in order to obtain valid and reliable measures of students' knowledge. Objectives: The research question that drove this research was: what actions have been proposed in contemporary research to improve remote assessment trustworthiness from a technological and pedagogical perspective? Methods: We analysed the papers accepted for the special issue titled 'Trustworthy Assessment and Academic Integrity in Remote Learning' following a deductive qualitative category coding methodology to find the main approaches. Results and conclusions: We identified eight approaches to improve trustworthiness in remote assessment: four for exams and high‐stake tests, one exclusively for performance‐based assessments, and three for any type of assessment. Our findings shift attention from academic dishonesty to trustworthy assessment, integrating recent findings of papers accepted to this special issue. Implications: Our findings deepen current understanding of trustworthy remote assessments, inviting practitioners and researchers to explore different types of assessment methods and different moments related to assessing learning. Lay Description: What is already known about this topic?: Online learning has grown significantly during the last decade.This growth increases the need for online assessment methods that can provide a valid, reliable, and fair measure of student knowledge.Research demonstrated the prevalence of academic dishonesty in online learning.There is a timely need to research and develop methods for trustworthy online assessment, as well as to raise the awareness of researchers, practitioners, and administrators, to the topic and to the solutions at hand. What this paper adds?: A review of the state‐of‐the‐art with respect to trustworthy assessment in online learning.A typology of strategies to improve trustworthy assessment, characterizing the pedagogical approach, technological method, context, and type of assessment.An analysis of different solutions, approaches, and case studies, with respect to the proposed typology.A novel approach to inform the design and implementation of valid and reliable online assessment. The implications for practitioners: The paper presents strategies and approaches for implementing trustworthy assessment in online learning.The paper provides a conceptual framework that can inform the design of valid and reliable assessments methods, and analyse both existing and newly proposed onesHighlighting the importance of including the assessment as an integral part of the instructional design phase of online learning offerings. [ABSTRACT FROM AUTHOR]

A smartphone application (app) from the company Monsenso was developed to monitor anxiety symptoms in the treatment of anxiety disorders as an alternative to paper registrations. The aim of the study was to explore patient and therapist experiences of using the app in conjunction with standard treatment for anxiety disorder in a developmental and implementation phase. The study design was qualitative. Semi-structured interviews were conducted with three therapists and seven patients from an outpatient clinic. The interviews were analysed using thematic analysis. Three main themes emerged for both patients and therapists. The patient themes were usability (it was easier to use the app and remember daily mood registrations), insight in own disorder (awareness of symptom progress), and support to use the app (support from the therapist was wanted). The therapist themes were therapeutic quality (app registrations made it easier to prepare sessions), the role of the therapist (enthusiasm and technical assistance affected the patient), and implementation challenges (time allocation is important). The anxiety monitoring app is recommended in standard treatment as an alternative to paper registrations. However, a successful development and implementation process include ready available technical support, time allocation, and therapist effort and enthusiasm. [ABSTRACT FROM AUTHOR]

Aim: To explore undergraduate nursing and midwifery student perspectives of using digital patient systems on clinical placements. Design: This was an interpretative qualitative design study. Methods: Undergraduate nursing and midwifery students in a large Australian metropolitan university were invited to participate in two focus groups from April to June 2019. Twenty (20) students participated and data on their perspective of using digital systems on placement were collected. Thematic analysis using NVivo 12 software was undertaken. Findings: Students identified benefits and challenges when moving between paper records and digital systems. Whilst paper reporting was more efficient for some processes, the students recognised the advantages of digital technology, such as enabling greater confidentiality and consolidation of patient data in one place. However, they also reported difficulty with student access and the size of the portal digital workstation at the bedside. Generally, the lack of preparation and access was considered frustrating and mitigated some of the benefits described when using digital systems. Conclusions: Nursing and midwifery students prefer to be prepared for both paper and digital record keeping. Whilst students identify the benefits of digital platforms, not having direct access mitigates the benefits of these systems. Students identified the use of simulation and interactive modules prior to commencement of clinical practice to enable them to feel more confident with using the systems in patient care. Impact: Health care students require direct access to digital health platforms whilst on clinical placement to facilitate their learning. Higher Education Institutions (HEIs) are in a unique position to work with health care providers to better prepare health care professionals, including nurses and midwives, to work with digital health care systems. Further research is needed to develop the educational preparation for nurses, midwives, and other health care professionals to work with digital systems in practice. [ABSTRACT FROM AUTHOR]

Background: Infertility affects over 50 million couples worldwide and impacts people's social and emotional wellbeing. In low- and middle-income countries, particularly across Africa, the inclusion of fertility care into reproductive health (RH) policies remains fragmented or non-existent.Objective and Rationale: This review aims to provide a framework for understanding the inclusion (or lack thereof) of fertility care in RH policies in African settings. It synthesizes the barriers and facilitators to such inclusion, with a view to uncovering the positioning of fertility care in broader health systems and on the agendas of key stakeholders such as health policymakers and practitioners.Search Methods: A qualitative evidence synthesis was performed, systematically searching papers and grey literature. Searches were conducted in MEDLINE, EMBASE, CINAHL, Web of Science and Scopus between February and April 2020. No date restrictions were applied. Language was limited to publications written in English and French. Two reviewers independently screened titles and abstracts, and extracted data, applying thematic coding. The quality of the included papers was evaluated using The Joanna Briggs Institute Checklist for Text and Opinion Papers.Outcomes: The search identified 744 papers, of which 20 were included. Findings were organized under four cross-cutting categories, namely: perceived importance of infertility; influence of policy context; resource availability and access; and perceived quality of care. Across these categories, key barriers to the inclusion of fertility care in RH policies were limited political commitment, under-recognition of the burden of infertility and high costs associated with ART. Conversely, facilitators comprised specialized training on infertility for healthcare providers, standard procedures for ART safety and guidelines and North-South/South-South collaborations.Wider Implications: The inclusion of fertility care in African RH policies depends upon factors that include the recognition of infertility as a disease, strong political engagement and proactivity and affordability of ART through opportunities for partnership with the private sector, which ease costs on the public health system. Further qualitative and quantitative research, including context-specific analysis and in-depth comparative approaches across diverse African countries, will help to delineate differential impacts of local and global factors on fertility care to address this neglected RH issue. [ABSTRACT FROM AUTHOR]

This paper explores collaborations between community organizations and STARlab (Systems Transformation Action Research Lab), a university-based research unit focusing on inclusive social innovation and entrepreneurship, specifically with marginalized communities. Using a cross case analysis methodology, this paper draws from the author's prior research with two community organizations that engaged in community-based social change initiatives to support inclusive entrepreneurship in Aotearoa New Zealand. Cases like these which examine how researchers establish community partnerships in systems change work are critical to explore how collaborations can be nurtured over time for impactful results. The first initiative, Iti Rearea Collective, was co-designed to support former refugee and migrant founders of small businesses. Using a collaborative governance model, IRC provides services and address systemic barriers for resettled refugee entrepreneurs in Auckland. The second case, Startup Dunedin, is a university-community incubator and entrepreneurship hub that worked with researchers to map systems of service providers and act to create inclusive entrepreneurial spaces. Each of these cases is an example of an action research initiative that addresses complex systemic issues. Using these cases as illustrative stories, this paper offers insight into one approach to community collaboration for equitable and sustainable systems change. [ABSTRACT FROM AUTHOR]

This paper explores how neoliberal ideologies inform both social and political agendas that influence how social workers can provide support to trans and gender diverse people attempting to access gender-affirming healthcare, using an analysis of social workers' experiences working in mental health in Nova Scotia, Canada. Qualitative semi-structured interviews provide a perspective of the experiences of social workers in Nova Scotia and how their ability to provide mental health services to trans and gender diverse people is impacted by neoliberalism. Most social workers attributed the structural context of working within a bio-medical system as contributing to social workers being disempowered, undermined, and not able to practice according to the values of their profession thus limiting their ability to provide affirming mental health supports to trans and gender diverse people in ways that align with their social work professional ethics and values. Through examining how neoliberal ideologies create notions of ideal social citizens by controlling the body, the paper explores how lived experience of neoliberal practices in mental health social work reinforce transnormativity. This paper highlights the necessity for social workers to resist dominant neoliberal and medicalized discourses which serve as mechanisms of power and control. The paper concludes with recommendations for social work practice with trans and gender diverse populations. [ABSTRACT FROM AUTHOR]

Purpose: Greener on the Outside for Prisons (GOOP) is a therapeutic horticulture programme targeting the high levels of complex health and social care needs in prisons in England. The COVID-19 pandemic and resulting lockdowns led to unprecedented disruption in prisons in England. This paper examines the experiences of prisoners both during and post-lockdowns in four prisons, to understand the effects of participation in GOOP on health and wellbeing after the disruption of restrictions, and identify implications for developing this programme further. Design/methodology/approach: The paper is based on original qualitative data gathered from in-depth narrative-based interviews and focus groups with prisoners and staff in four English prisons. Audio data was transcribed and subject to a thematic analysis, drawing from a realist-informed lens. Findings: Thematic analysis revealed five key themes: reimagining the GOOP context; increasing empathy between participants; building sense of coherence; reconnecting with nature and a joined-up connection with provider services. The main arguments centre on horticulture in prisons remaining under-utilised as a means of promoting good health and wellbeing, although there is enthusiasm from staff to provide green spaces for the most vulnerable prisoners and develop a range of mechanisms to connect people in prison with nature. Originality/value: This paper focuses on new knowledge arising from an unprecedented situation in English prisons, from key stakeholders on the frontline of garden activities. Accounts demonstrate the extent of the health and wellbeing benefits of participation in such activities in this challenging environment, which has implications for practice for prisons more widely. [ABSTRACT FROM AUTHOR]

Efficient teamwork is crucial to provide optimal health care. This paper focuses on teamwork between Anaesthesiologists (ANES), Certified Registered Nurse Anaesthetists' (CRNA) and Critical Care Registered Nurses (CCRN) working in challenging environments such as the intensive care unit (ICU) and the operating room (OR). Conflicts are common between physicians and nurses, negatively impacting teamwork. Social hierarchies based on professional status and power inequalities between nurses and physicians plays a vital role in influencing teamwork. Foucault was a famous thinker especially known for his reasoning regarding power/knowledge. A Foucauldian perspective was therefore incorporated into this paper and the overall aim was to explore CCRN/CRNA perception of knowledge/power in teamwork with ANES. Methods A mixed-method approach was applied in this study. Data was collected using a web-based questionnaire containing both closed-end and open-ended questions. A total of 289 CCRNs and CRNAs completed the questionnaire. Data analysis was then conducted through five stages as outlined by Onwuebugzie and Teddlie; analysing quantitative data in SPSS 27.0 and qualitative data with a directed content analysis, finally merging data together in ATLAS.ti v.23. Results The result reveals a dissonance between quantitative and qualitative data; quantitative data indicates a well-functioning interdisciplinary teamwork between CCRN/CRNA and ANES - qualitative data highlights that there are several barriers and inequalities between the two groups. Medicine was perceived as superior to nursing, which was reinforced by both social and organisational structures at the ICU and OR. Conclusion Unconscious rules underlying current power structures in the ICU and OR works in favour of the ANES and biomedical paradigm, supporting medical knowledge. To achieve a more equal power distribution between CCRN/CRNAs and ANES, the structural hierarchies between nursing and medicine needs to be addressed. A more equal power balance between the two disciplines can improve teamwork and thereby reduce patient mortality and improve patient outcomes. [ABSTRACT FROM AUTHOR]

Owing to its cost-efficiency, 24-hour home care is increasing and represents a cornerstone in the care of elder people in Austria. A software solution to support 24-hour caregivers in their daily routine was developed facilitating a user-centered design process. It includes electronic documentation, an e-learning platform, emergency management, and a communication tool. To evaluate the usability and acceptance of the developed software solution, a qualitative survey including focus groups (FG), a group interview (GI), and a usability walkthrough (UW) were conducted. This paper describes the findings of the qualitative survey which indicate that the e-learning platform as well as the e-documentation support 24-hour caregivers in their daily work with their clients. Participants with less technical affinity needed support to use the tool proficiently. 24-hour caregivers appreciate the fact that the solution unites all the needed information in one place. [ABSTRACT FROM AUTHOR]

Objective: To explore the experiences and emotions of individuals with depression and physical comorbidity within the context of psychoeducational group interventions led by primary care nurses in Catalunya (Spain). Method: A psychoeducational group intervention was conducted in the first semester of 2019 with 13 primary care teams (rural/urban) and 95 participants with depression and physical comorbidity. The qualitative research and phenomenological perspective were based on 13 field diaries and 7 semi‐structured interviews carried out with the observer nurses. The interviews were recorded and transcribed. Codes were identified by segmenting the text into citations/verbatim accounts and emerging categories/subcategories by regrouping the codes. The results were triangulated among the researchers to identify and compare similarities and differences. Results: Four major themes were found: (a) gender differences; (b) coping strategies and changes observed during the intervention; (c) functions of the group as a therapeutic element; and (d) the nurses' perceptions of the group experience. Gender differences were identified in relation to experiences and emotions. Conclusions: As some patients acquired skills/behaviours during the intervention that helped them initiate changes and the nurses were satisfied with the intervention, it is important to include this information when planning effective interventions for patients with this profile. Summary statement: What is already known about this topic? There are gender differences in the prevalence of depression. What this paper adds? This study describes the experiences and emotions of women with depression and physical comorbidity within the context of psychoeducational group intervention. The implications of this paper: The study provides information about the experiences and emotions of women with depression. It will be important to include this qualitative information when planning effective interventions directed at patients with this profile. [ABSTRACT FROM AUTHOR]

Background: Involving consumers in systematic reviews can make them more valuable and help achieve goals around transparency. Systematic reviews are technically complex and training can be needed to enable consumers to engage with them fully. The Cochrane Common Mental Disorders group sought to engage people with lived experience of mental health problems in the Voice of Experience College, three workshops introducing them to systematic review methods and to opportunities to contribute as Cochrane consumers. We aimed to collectively evaluate the College from the perspective of both facilitators and consumers, to critically reflect on the experience, and to identify how the College could be sustained and spread to other review groups. Methods: This study was a longitudinal qualitative and collaborative evaluation, structured around normalisation process theory. Both facilitators and consumers were involved in not only providing their perspectives but also reflecting on these together to identify key learning points. Results: The workshops were positively evaluated as being engaging and supportive, largely due to the relational skills of the facilitators, and their willingness to engage in joint or two‐way learning. The College suffered from a lack of clarity over the role of consumers after the College itself, with a need for greater communication to check assumptions and clarify expectations. This was not achieved due to pandemic disruptions, which nevertheless demonstrated that resources for involvement were not prioritised as core business during this period. Conclusions: Soft skills around communication and support are crucial to effective consumer engagement. Sustaining involvement requires sustained communication and opportunities to reflect together on opportunities and challenges. This requires committed resources to ensure involvement activity is prioritised. This is critical as negative experiences later in the involvement journey can undermine originally positive experiences if contributors are unclear as to what their involvement can lead to. Open discussions about this are necessary to avoid conflicting assumptions. The spread of the approach to other review groups could be achieved by flexibly adapting to group‐specific resources and settings, but maintaining a core focus on collaborative relationships as the key mechanism of engagement. Patient and Public Contribution: Public contributors were collaborators throughout the evaluation process and have co‐authored the paper. [ABSTRACT FROM AUTHOR]

The emergence of the COVID-19 pandemic significantly changed the prenatal care experience, specifically regarding medical appointments and social opportunities. It is critical to capture this change through the narratives of pregnant people, particularly those of marginalized populations, whose voices may often be underrepresented in the literature. This mixed-methods paper summarizes the experiences of 40 pregnant Black/African American (AA) women during the COVID-19 pandemic. A cross-sectional, online survey was administered between 2020 and 2021 to assess prenatal health and the impacts of the COVID-19 pandemic on patients' pregnancy experience. Coping behaviors during the pandemic were self-reported using the COPE-IS. Univariate analyses were conducted. An additional analysis of participants (n = 4) was explored through a week-long qualitative exercise using a photo documentation procedure. Photo-Elicitation Interviews (PEI) were conducted to capture and center their pandemic pregnancy experiences. Sources of stress during the pandemic varied, with the most common being financial concerns (n = 19, 47.5%). Over half of the sample (n = 18, 54.5%) self-reported increases in their positive coping behaviors during the pandemic, such as communicating with friends and family, talking to healthcare providers, listening to music, and engaging in spiritual practices–such as prayer. The four PEI study participants reflected on the impacts of social distancing on their prenatal experience and mentioned hospital and provider-related weariness due to their race. The findings of this study suggest that during the COVID-19 pandemic, Black/AA pregnant women in Charlotte, NC used social support, mindfulness practices, self-advocacy, and health literacy to navigate challenges present during their prenatal health experience. This paper highlights the personal, social, and structural experiences of pregnant women during a public health crisis so that responsive and effective programs or policies can be planned in the future. [ABSTRACT FROM AUTHOR]

Objectives: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. Design: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). Participants: One hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached). Results: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. Conclusions: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations. [ABSTRACT FROM AUTHOR]

Background and Objectives: People living with dementia have historically been excluded from qualitative research and their voices ignored due to the perception that a person with dementia is not able to express their opinions, preferences and feelings. Research institutions and organizations have contributed by adopting a paternalistic posture of overprotection. Furthermore, traditional research methods have proven to be exclusionary towards this group. The objective of this paper is to address the issue of inclusion of people with dementia in research and provide an evidence-based framework for dementia researchers based on the five principles of human rights: Participation, Accountability, Non-discrimination and equality, Empowerment and Legality (PANEL). Design: This paper adapts the PANEL principles to the research context, and uses evidence from the literature to create a framework for qualitative research in people with dementia. This new framework aims to guide dementia researchers in designing studies around the needs of people with dementia, to improve involvement and participation, facilitate research development and maximize research outcomes. Results: A checklist is presented with questions related to the five PANEL principles. These questions cover ethical, methodological and legal issues that researchers may need to consider while developing qualitative research for people with dementia. Conclusions: The proposed checklist offers a series of questions and considerations to facilitate the development of qualitative research in patients with dementia. It is inspired by current human rights work of recognized dementia researchers and organizations who have been directly involved in policy development. Future studies need to explore its utility in improving participation, facilitating ethics approvals and ensuring that outcomes are relevant to people with dementia. [ABSTRACT FROM AUTHOR]

Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Purpose: Sociometric studies and adult reports have established that children with Language Disorder (LD) are at risk of peer relationship difficulties. However, we have limited knowledge of how children with LD understand friendship, whom they deem as a good or bad friend, and what role their friendship concepts play in their relationships with peers. This exploratory study aimed to conduct a qualitative investigation into the friendship concepts that children with LD hold and to explore their strategies for making friends. Methods: We conducted multiple, art‐informed interviews on the topic of friendship with 14 children with LD at the age of 6–8 years. Participating children were based in the United Kingdom and Republic of Ireland. They attended enhanced provision, specific speech and language classes and mainstream classrooms. We used framework analysis to map children's responses to Selman's (1979) developmental model of interpersonal understanding, which espouses a theory of children's social development within the context of peer relationships. Results: The understanding of friendship formation in children with LD varied from physical presence to mutual support and sharing. Children's ideas about a good/bad friend represented the lowest developmental stage. Participants from the mainstream classroom demonstrated the highest stages of interpersonal understanding. Children with LD did not mention their language abilities as a barrier to making friends. Conclusion: There are limited studies exploring friendship directly from children with LD, and this study provides insights into this gap, by utilising art‐informed interviews. Children's immature understanding of a good/bad friend points towards a potential susceptibility to false friends, which we suggest needs further empirical validation. We also found that children with LD did not pay attention to their language difficulties when making friends, which raises questions about the ways diagnoses are shared with children. WHAT THIS PAPER ADDS: What is already known on the subject: Children with Language Disorder (LD) are at risk of peer relationship difficulties. Studies to date are based on sociometrics and adult reports. Only a few studies employ participatory approaches to research with children, directly engaging children with LD when exploring their friendships What this paper adds: This paper directly asks children with LD about their understanding of friendship and strategies for making friends.Physical proximity and play are important to children.s understanding of friendship especially in recognising good and bad friends. This indicates potential reasons for children with LD being susceptible to false friendsAdditionally, children with LD do not perceive language and communication as a barrier to making friends. What are the potential or actual clinical implications of this work?: Concepts around friendship and good/bad friends should be routinely assessed and targeted (if appropriate) in interventions. The study highlights the need to continue discussing practices around sharing diagnoses with children with LD. [ABSTRACT FROM AUTHOR]

This paper presents a review of the existing qualitative research literature concerning people's experience of communicating using augmentative and alternative communication (AAC). The aims of conducting this review were to find out more about the values and outcomes that are important to people about the AAC they use to support their communication. This review was conducted to provide a deeper understanding of these experiences to inform the development of a patient-reported outcome measure (PROM). A qualitative evidence synthesis of existing qualitative research literature was undertaken to explore and appraise current knowledge about the experiences of people who use AAC. From 115 qualitative research reports 19 papers were identified that responded directly to the research question and aims of the review. Data were identified that could be organized within an a priori framework consisting of the constructs of values, outcomes, and context. The review has resulted in a deeper, analytical understanding of the experiences of people who require AAC. The results indicate a set of concepts that can be used to inform the development of a PROM. A PROM can be used to assist clinicians and researchers to better understand the perspectives of people who require AAC and evaluate interventions. The results also encourage professionals to reconsider the terminology and methods used when working alongside people who require AAC and to reflect on the multidimensional factors that influence people's experience of communication. Patient-reported outcome measures (PROMs) can be useful tools to support clinician-patient communication, facilitate shared decision making and establish priorities for rehabilitation. It can be difficult to engage people who have complex communication difficulties in decisions about the important outcomes to them from using augmentative and alternative communication (AAC). This qualitative evidence synthesis provides a deeper understanding of the experiences and perspectives of people who use AAC. The results will be used to inform the development of a PROM which can be used to facilitate shared decision-making, and evaluate AAC interventions from the perspective of the people who use these technologies. [ABSTRACT FROM AUTHOR]

WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions. There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work. When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions. Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care. [ABSTRACT FROM AUTHOR]

There has been a major growth in global health networks in recent decades to address health issues including tobacco use, alcohol abuse, and maternal mortality. Most conditions that incur high costs have provoked networks of advocates working to mitigate the impact, increase investment in research, and establish campaigns. Global health networks often work simultaneously across policy, knowledge creation, and advocacy. Until recently there has been limited activity in global health networks and advocacy addressing hearing loss and deafness which has contributed to its relatively low visibility with policymakers compared to other health conditions. This discussion paper reports on a global consultation that explored the views of advocacy groups and individuals on advocacy for the management of hearing loss, and cochlear implantation (CI). It focussed on stakeholders' views of current advocacy endeavours, opportunities and barriers, and the possible development of a global advocacy network to improve access to cochlear implantation and the supporting services. The subsequent development of a global health network, the Cochlear Implant International Community of Action (CIICA) is discussed and the conditions necessary for the successful development of health networks are explored. This paper will be of interest to those wishing to understand the factors influencing the development of health networks and advocacy. [ABSTRACT FROM AUTHOR]