Search

Aims: To explore how parents experienced their child with delirium and how parents viewed our delirium management bundle. Design: We conducted a qualitative exploratory descriptive study using semi‐structured individual or dyad interviews. Methods: Twelve semi‐structured interviews with 16 parents of 12 critically ill children diagnosed with delirium in a paediatric intensive care unit were conducted from October 2022 to January 2023 and analysed through a reflexive thematic analysis. Findings: We generated five themes: (1) knowing that something is very wrong, (2) observing manifest changes in the child, (3) experiencing fear of long‐term consequences, (4) adding insight to the bundle, and (5) family engagement. Conclusion: The parents in our study were able to observe subtle and manifest changes in their child with delirium. This caused fear of lasting impact. The parents regarded most of the interventions in the delirium management bundle as relevant but needed individualization in the application. The parents requested more information regarding delirium and a higher level of parent engagement in the care of their child during delirium. Impact: This paper contributes to understanding how parents might experience delirium in their critically ill child, how our delirium management bundle was received by the parents, and their suggestions for improvement. Our study deals with critically ill children with delirium, their parents, and staff working to prevent and manage paediatric delirium (PD) in the paediatric intensive care unit. Reporting Method: The consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting. Patient or Public Contribution: No patient or public contribution to the research design. What does this Paper Contribute to the Wider Global Community?: ‐ It increases awareness of the parent's perspective on PD in critically ill children.‐ It shows how PD might affect parents, causing negative emotions such as distress, frustration, and fear of permanent damage.‐ It shows that the parents in our study, in addition to the care bundle, requested more information on delirium and more involvement in the care of their delirious child. [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]

Caregiving in the South Asian context is often assumed by family automatically for the person with cancer (PWC). In this paper, we applied the disclosure decision-making model (DD-MM) to understand the motives behind cancer prognosis disclosure (or not) by caregivers to the PWC. Fifty caregivers participated in semi-structured interviews; and data were analyzed using Framework Approach. For the disclosing caregivers, some of the themes that emerged were consistent with the DD-MM framework while others were not. In particular, the theme "recipient assessment" was part of the DD-MM framework, while others such as unmet communication needs, caregiver self-reflection, and family support were outside of the framework. In contrast, for the non-disclosing caregivers, the reasons for nondisclosure fit very concisely into the DD-MM framework, particularly with information assessment, recipient assessment, and (non) disclosure efficacy. This study has significant implications for development of communication skills trainings around holding family meetings in India. [ABSTRACT FROM AUTHOR]

The sexual exploitation of children and youth remains a critical issue within the child welfare system, despite the limited availability of models of care to support these vulnerable individuals. The START with the YOUTH (STAR‐Y) program adopts a preventative approach, offering personalized care and wraparound support to youth exhibiting at‐risk behaviours. This paper employs a case study methodology using both thematic and content analyses to longitudinally assess the effectiveness of this exploratory program. This evaluation encompasses a comprehensive assessment of various factors associated with the risk of sexual exploitation among program participants. Throughout the program's extended duration (originally planned for one year), predefined risk factors, including concerning Internet behaviours, were monitored and analysed. Qualitative data were gathered through interviews and observations, focusing on the experiences of both the youth and their foster parents. The results highlight the program's successful implementation, with youth enrollment (N = 3) demonstrating a reduction in sexual exploitation risk factors over time, including a decrease in behaviours such as concerning Internet usage. The importance of wraparound support and the foster parent‐youth relationship in mitigating risk and nurturing resilience became evident. This exploratory evaluation serves as the initial phase of a comprehensive assessment aimed at understanding how to effectively support youth within this population, including those at higher risk, such as those possibly involved in sex trafficking. The study's findings provide valuable insights into strategies for mitigating the risk of sexual exploitation among vulnerable youth, informing future endeavours to develop and implement similar programs within the child welfare system. [ABSTRACT FROM AUTHOR]

Accessible Summary: What is known on the subject?: The leading reason for suicide attempts in Japan is health problems, among which depression is the most common, followed by physical illnesses.Patients with physical illness and suicide ideation are not rare among patients receiving home‐based care.General home visiting nurses (GHVNs) without knowledge, skills or experience in psychiatric care are required to provide care for patients with physical illness who are at risk of suicide in Japan. What this paper adds to existing knowledge?: More detailed understanding of GHVNs' experiences and perspectives on working with suicidal patients in home care.This study enriches our understanding of how suicide prevention strategies should be developed for GHVNs. What are the implications for practice?: Focusing education on therapeutic communication skills and meanings with relationships with patients is required by GHVNs.Training for suicide risk assessment and guidelines appropriate to GHVNs' situation is crucial.Establishing a liaison service system with a multidisciplinary team, including psychiatric home‐visiting nurses, is necessary for home healthcare to achieve continuity of care. Introduction: In Japan, even a general home visiting nurse (GHVN) lacking psychiatric experience and training can provide home nursing care to patients at risk of suicide. Little attention is given to nursing care for suicide by GHVNs who care for patients with physical illness. However, these patients with suicidal ideation for home care are surprisingly common. Aim/Question: We explored the experiences of GHVNs who cared for patients with suicidal ideation and focused on the nurses' perceptions and interactions. Method: We conducted semi‐structured interviews with 15 GHVNs. We discussed the nurses' experiences caring for patients with suicidal ideation, their perceptions during these interactions and their response. Results: General home visiting nurses were perplexed upon learning of the patient's suicidal ideation. They interacted with such patients by 'avoiding the core of the matter' while focusing on maintaining a relationship with them. Discussion: Not addressing the patient's suicidal thoughts will not only disable the suicide risk assessment but also lead to patient isolation. Suicide prevention care needs to consider the unique characteristics of home care. Implications for Practice: General home visiting nurses require training in suicide risk assessment and communication skills. Establishing a liaison service, including psychiatric home visiting nurses, is necessary to achieve continuity of care. [ABSTRACT FROM AUTHOR]

Although widely acknowledged as an important social determinant of health, until recently researchers and policymakers have primarily approached housing insecurity as an urban issue, obscuring the visibility of its impacts in rural contexts, including the ways in which housing insecurity intersects with other health and structural inequities facing rural populations. Working to address this gap in the existing literature, this paper explores the experiences of housing insecurity in a rural context by reporting on an analysis of 210 in-depth interviews with 153 adults between the ages of 18–35, living in California's rural North State, a relatively overlooked far northern region of the state comprised of 12 north central and north eastern counties. Using in-depth qualitative interview data, we conducted an exploratory pattern-level analysis of participants' narratives structured by four dimensions of housing insecurity defined in the literature (housing affordability, housing stability, housing conditions, and neighborhood context). Drawing attention to the pervasiveness of rural housing insecurity within our sample, this analysis highlights the unique ways in which rurality creates distinct experiences not currently captured in the existing literature. Further research is needed across different types of rural communities to better understand the various ways that housing insecurity affects the everyday lives and health of rural residents. By grounding research within the experiences of rural residents, we are better able to respond to the crisis of rural housing insecurity and develop solutions that are tailored to rural residents' unique needs. [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]

Rationale, aims and objectives Despite extensive evidence on the value of patient decision support interventions ( DESIs), there is no consensus on optimal DESI formats. Assessing clinicians' perceptions about DESI formats can help facilitate their adoption. The aim of this study was to assess clinicians' perceptions of DESIs formats and potential use in practice. Methods Semi-structured qualitative interviews were conducted with doctors from diverse practice areas (internal medicine, OB/ GYN, surgery, medical oncology, emergency medicine) and elicited perceptions toward patient DESIs formats (digital vs. paper) and timing of administration. Questions also elicited beliefs underlying attitudes, perceived social norms and self-efficacy for using DESIs and the feasibility of doing so. Data analysis was conducted using a thematic analysis approach. Results Participants identified strengths of both more comprehensive digital and shorter paper-based tools and thought they could complement each other. Participants consistently expressed the advantages of using DESIs outside the consultation to supplement clinical discussions about cancer decisions given the amount of information to discuss during these emotion-laden conversations. Participants felt that patients with older age and lower socio-economic status were more likely to use a paper-based compared with a digital DESI. Participants also noted challenges related to reliable resources such as computers and Internet in the practice setting, which would be necessary for implementing the digital DESIs on site. Conclusions Clinicians' perceptions and opinions about value of DESIs can vary widely across doctor, patient and clinic characteristics. A one-size-fits-all approach to implementation might not be feasible, suggesting that flexible approaches to providing decision support for patients are needed to drive broader adoption. [ABSTRACT FROM AUTHOR]

ABSTRACT BACKGROUND The Healthy, Hunger-Free Kids Act of 2010 ( HHKA) required schools to make changes to meals provided to children. Rural school districts have limited resources, with increased obesity rates and local food insecurity. In this study we sought to understand the perceptions of rural food service directors and the barriers to implementing the changes. METHODS Food service directors from rural school districts were invited to complete a semistructured telephone interview and online survey. A total of 51 respondents completed both, 6 completed only the online survey, and 16 completed only the telephone interview. Qualitative interview data were analyzed through open thematic coding; descriptive statistics were calculated for the quantitative data. RESULTS Food service directors mostly perceived the changes as negative, challenging, and burdensome. They believed that the changes resulted from concern about childhood obesity, which they did not view as a problem for their students. Diverse challenges were reported related to cost, preparation, and student preference. CONCLUSIONS Food service directors in isolated, rural areas need support to enhance understanding of HHKA requirements, build professional networks to learn from one another, and communicate with students, families, and other stakeholders. Future efforts should focus on changing perceptions and supporting directors in order to make implementation a success. [ABSTRACT FROM AUTHOR]

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were analyzed thematically. Study findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as "child play," it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. Methods: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. Results: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. Conclusions: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational. [ABSTRACT FROM AUTHOR]

For over 70 years, studies have reported lower rates of completed suicide in Muslim-majority countries and individuals who identify as Muslim. To this point, the mechanisms underlying the relationship between Islam and lower risk of suicide remain understudied. In an effort to advance our understanding, we convened a bilingual international interdisciplinary panel of experts for a discussion of the current state and future directions of the field. In this paper, we present an exploratory qualitative analysis of the core themes that emerged from the group interviews. We also derive a general theoretical model of the association between Islam and suicide risk. [ABSTRACT FROM AUTHOR]

The development of a tool to track participation in activity-based therapy (ABT) for people with spinal cord injury or disease (SCI/D) was identified as a priority of the Canadian ABT Community of Practice. The objective of this study was to understand multi-stakeholder perspectives on tracking ABT participation across the continuum of care. Forty-eight individuals from six stakeholder groups (persons living with SCI/D; hospital therapists; community trainers; administrators; researchers; and funders, advocates and policy experts) were recruited to participate in focus group interviews. Participants were asked open-ended questions concerning the importance of and parameters around tracking ABT. Transcripts were analyzed using conventional content analysis. Themes reflected the Who, What, Where, When, Why and How of tracking ABT. Participants described the importance of involving hospital therapists, community trainers and individuals with SCI/D in tracking ABT to capture both subjective and objective parameters across the continuum of care and injury trajectory. Digital tracking tools were favoured, although paper-based versions were regarded as a necessity in some circumstances. Findings highlighted the importance of tracking ABT participation for individuals with SCI/D. The information may guide the development of ABT practice guidelines and support the implementation of ABT in Canada. Tracking the details of activity-based therapy (ABT) sessions and programs across the continuum of care and injury trajectory may provide important information to support the development of ABT practice guidelines and implementation strategies. Tracking objective and subjective parameters are needed to provide a comprehensive description of an ABT session and program. Clinicians and individuals with spinal cord injury or disease (SCI/D) should both be able to track ABT to accommodate all settings and types of data. Digital tracking tools, such as an app, may provide an accessible, versatile and efficient way of tracking ABT. [ABSTRACT FROM AUTHOR]

This paper authentically represents the voices of non-verbal children with cerebral palsy using a case study design. Policy suggests that children should have the right to play and leisure opportunities, however non-verbal children with cerebral palsy have fewer choices. Additionally, children with communication, learning and mobility limitations are usually excluded from research. The aim of this research was to capture the voices of non-verbal children by exploring their well-being impact in terms of their experiences and choices about their level of participation in recreational activities. A qualitative case series study included interviews, observations, photographs and diaries. Where possible, the diaries were completed by both caregivers and children. Data were analysed thematically, and the lens of positioning theory applied. Seven children aged nine to sixteen years participated. The findings showed how equipment, people and environments enabled or hindered the children's participation. The children also advocated as champions for their own well-being. Positioning theory was applied across the data and was adapted offering a way to better understand the children's well-being responses. The findings demonstrate how these children were able to self-advocate, demonstrating their well-being by their intentional behaviours from their level of participation in a recreational activity. The voices of non-ambulant and non-verbal children are underrepresented in the literature. This study offers an innovative approach to highlight their voices using visual data. The images project the narrative about their choices for participation in recreational activities. The proposed kaleidoscope of well-being offers a way to demonstrate the fluctuations in their emotional responses from their participation. Choices for participation in recreational activities remains limited for non-ambulant and non-verbal children with cerebral palsy. Designers and policy makers should consider how equipment and environments can be adapted or created to increase the choices for non-ambulant and non-verbal children with cerebral palsy. Practitioners in health and social care should consider how to listen to the voices of non-verbal and non-ambulant children with cerebral palsy and their parents/guardians and work towards jointly setting participation goals to affirm their strengths. [ABSTRACT FROM AUTHOR]

This paper critically reviews and reflects on the processes for providing Assistive Technology (AT) services to Persons with Disabilities (PWD) in Bangladesh, India and Nepal. The aim is to investigate the AT service delivery systems in these countries and suggest improvements where weaknesses are identified. We carried out a descriptive qualitative exploratory study in Bangladesh, India and Nepal by conducting key informant interviews with policymakers (5), AT service providers (22) and mobility and hearing related AT service users (21). We used a directed content analysis approach guided by a seven-point AT service delivery process model to thematically analyse the existing processes for AT service delivery, from first contact through to follow-up and maintenance. AT service delivery processes are sub-optimal in all three countries, and improvements are needed. No common AT service delivery process was found, although there are common features. In general, it is easier for PWDs in India and Nepal to access AT than for those in Bangladesh, but all three countries are failing to live up to their commitments to uphold the human rights of PWDs. Although good elements of AT service delivery processes can be identified, the systems in all three countries are fragmented and generally weak. A more holistic approach of looking at the process of AT service delivery, from first contact right through to follow-up and device maintenance, with a single door service delivery system, free of cost at the point of service is recommended in these countries. Although we found significant weaknesses in AT delivery in all three countries, there are some good AT service delivery practices and opportunities for these countries to learn from one another. A systematic and stepwise approach to assessing current AT service delivery processes in the three countries – examining the delivery system as a whole, from initiation to repair and management – can help identify opportunities to improve the process for (prospective) AT users. A more coherent single door system of AT service delivery will increase the quality and efficiency of the fragmented AT service delivery practices in Bangladesh, India and Nepal. [ABSTRACT FROM AUTHOR]

Background: Nursing education starts in the classroom environment with a focus on the nurse educator-nursing student relationship. 'Presence' is defined as "a practice where the caregiver relates her/himself to the other in an attentive and dedicated way, by doing so learns to see what is at stake for the other; from desires to fear, and, in connection with this, come to understand what could be done in this particular situation and who she/he can be for the other". 'Presence' forms an integral part of the nursing profession and the value thereof should be facilitated during teaching and learning. Reflective practices may offer a teaching–learning strategy to facilitate presence in nursing students by nurse educators in large class settings. Having large classes presents challenges including from nurse educators' lack of knowledge about alternative teaching approaches; time demands for designing, implementing and testing new teaching methods; a lack of confidence in implementing new teaching approaches in the classroom; selecting and grading assessments; as well as feelings of discomfort and anxiety. A model to facilitate presence through reflective practices has already been developed and published by the present authors. The model relies on well-established steps in theory development covering concept analysis, model development and description (published in two papers by the present researchers) and model evaluation (the subject of this paper). The evaluation was carried out by a panel of experts and nursing participants. Methods: An explorative and descriptive qualitative design was followed. The developed model was evaluated and refined in two steps (covered in this paper). In Step 1, the model was evaluated by a panel of experts in model development, reflective practices and presence. The panel used critical reflection resulting in the refinement of the model. Step 2 involved an empirical phase where the model was evaluated by participants through participatory evaluation. Participants were selected through purposive sampling. Data collection methods included online semi-structured focus group interviews with nurse educators and virtual World Café sessions with nursing students. Content analysis was done through open coding. Results: Five themes emerged from the empirical phase, namely: Theme 1: understanding of the model; Theme 2: benefits of the model; Theme 3: limitations of the model; Theme 4: pre-existing conditions needed for successful implementation of the model; and Theme 5: recommendations for further development of the model. Conclusions: The results produced a refined model to be implemented into the curriculums of undergraduate, postgraduate and continuous professional development programmes across nursing education institutions. This model will significantly contribute to the body of knowledge and increase nurses' awareness of presence by transforming the way they feel, think, care and act in practice, which contributes to personal and professional development. [ABSTRACT FROM AUTHOR]

Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. Design: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. Settings/participants: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. Results: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. Conclusion: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care. [ABSTRACT FROM AUTHOR]

Purpose: This paper presents qualitative research findings from the evaluation of a Parkinson's Dance well-being venture in the UK. Methods: Qualitative data was gathered to see how bespoke dancing sessions helped people with Parkinson's (PwP) to manage their conditions and improve their lives and prospects. Principles of a participatory approach were incorporated and methods included semi-structured interviewing, researchers participant observation and an elicitation-based activity. Nineteen PwP, six carers, four dance artists and seven helpers participated in the study. Results: Participating in Parkinson's Dance sessions meant that PwP could experience the possibilities to dance, develop a "can do" attitude, experience fun, enjoyment, social connection, exercise, movement to music, improvement and/or maintenance of their balance, suppleness, coordination and confidence with movement, symptoms being pushed back and ability to learn new things. Conclusions: Our findings add to the evidence-base about the benefits of dance for people experiencing Parkinson's and through novel application of the Life-world based well-being framework of K. T. Galvin and Todres (2011) we propose a theoretical basis for Parkinson's Dance as a resource for well-being. There is scope to consider application of the well-being framework to other arts activities and as the basis of an arts and well-being evaluation tool. [ABSTRACT FROM AUTHOR]

Since the 1990s, researchers have used community-based participatory approaches to achieve outcomes relevant to local communities, to build collaborative and sustainable research infrastructures, and to address disparities in knowledge production. Notwithstanding these strengths, communities and researchers have questioned its success in addressing power imbalances inherent in collaborative research encounters. In this methodological paper, we describe a novel community-based program science approach to guide an interdisciplinary research project on HIV self-testing among men who have sex with men in three Kenyan counties. Drawing on ethnographic field notes, we detail how community researchers and their academic and programmatic partners collaborated through all phases of the research process, including research design and data collection. Importantly, community researchers also played an integral role in data analysis and dissemination, going well beyond the conventional role of 'community engagement' in global health research. We also present findings from qualitative interviews conducted by community researchers with their peers to inform the rollout of HIV self-testing kits in their respective county-contexts. Our approach highlights that engaging community directly in evidence production allows research findings – owned and generated by communities on their own behalf – to be fed more swiftly and effectively into community-led program delivery. [ABSTRACT FROM AUTHOR]

Background: Virtual care quickly became of crucial importance to health systems around the world during the COVID-19 pandemic. Despite the potential of virtual care to enhance access for some communities, the scale and pace at which services were virtualized did not leave many organizations with sufficient time and resources to ensure optimal and equitable delivery of care for everyone. The objective of this paper is to outline the experiences of health care organizations rapidly implementing virtual care during the first wave of the COVID-19 pandemic and examine whether and how health equity was considered. Methods: We used an exploratory, multiple case study approach involving four health and social service organizations providing virtual care services to structurally marginalized communities in the province of Ontario, Canada. We conducted semi-structured qualitative interviews with providers, managers, and patients to understand the challenges experienced by organizations and the strategies put in place to support health equity during the rapid virtualization of care. Thirty-eight interviews were thematically analyzed using rapid analytic techniques. Results: Organizations experienced challenges related to infrastructure availability, digital health literacy, culturally appropriate approaches, capacity for health equity, and virtual care suitability. Strategies to support health equity included the provision of blended models of care, creation of volunteer and staff support teams, participation in community engagement and outreach, and securement of infrastructure for clients. We put our findings into the context of an existing framework conceptualizing access to health care and expand on what this means for equitable access to virtual care for structurally marginalized communities. Conclusion: This paper highlights the need to pay greater attention to the role of health equity in virtual care delivery and situate that conversation around existing inequitable structures in the health care system that are perpetuated when delivering care virtually. An equitable and sustainable approach to virtual care delivery will require applying an intersectionality lens on the strategies and solutions needed to address existing inequities in the system. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to explore and understand the barriers perceived by Italian nurses to adopting self‐monitoring for managing oral anticoagulation in real‐life settings. Background: Barriers to self‐monitoring implementation for managing oral anticoagulation have been poorly described. Design: The study had a qualitative descriptive and exploratory design with a hybrid approach. Methods: A literature review was conducted to identify a priori barriers (deductive approach), while a small and semi‐structured focus group discussion was performed to explore the contextual barriers experienced by Italian nurses (inductive approach). A classic content analysis technique was adopted. Data were collected in 2019. Findings Two main categories were identified. Organizational barriers referred to the lack of inter‐professional collaboration and health‐care system strategies to provide clinical pathways for self‐monitoring. Individual barriers encompassed professional characteristics (e.g. university background, professional knowledge, continuum education and accountability/responsibility) and patient characteristics (e.g. patient health literacy and knowledge, engagement/empowerment and educational programmes). Finally, unwarranted clinical variation in oral anticoagulation management arose as a barrier determined by organizational and individual elements. Conclusions: The results of this study pointed out an urgent public health issue in addressing barriers influencing self‐monitoring practice and in sustaining care models that might enhance the quality improvement of self‐monitoring for managing oral anticoagulation. Summary statement: What is already known about this topic? Anticoagulation therapy is one of the leading chronic treatments worldwide to prevent stroke in atrial fibrillation patients.Self‐monitoring is a valuable option to further improve the quality of anticoagulation surveillance and patient medication adherence compared to standard care models.Thus far, the barriers underpinning self‐monitoring implementation experienced by Italian nurses are mainly unexplored.What does this paper add? This study is the first Italian description regarding the main barriers perceived by Italian nurses to adopting SM in patients treated using oral anticoagulation therapy.Organizational barriers refer to the lack of inter‐professional collaboration and health‐care system strategies to provide clinical pathways for self‐monitoring.Individual barriers encompass professional characteristics and patient characteristics, and unwarranted clinical variation arose as a barrier determined by both organizational and individual barriers.The implications of this paper Description of the main barriers perceived by Italian nurses to adopt self‐monitoring of oral anticoagulation is required to prioritize policies and system‐level interventions.Health institutions, patient associations and scientific societies should develop policies that enhance the continuum of professional education of nurses regarding self‐monitoring for oral anticoagulation.Integrated care models where nurses have a leadership role in providing self‐monitoring practice are required to implement self‐monitoring widely. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to analyse and critically reflect on access to Assistive Technology (AT) for persons with disabilities (PWD) in Nepal, India and Bangladesh. This analysis aims to guide the development of a contextualised generic AT service delivery model suitable for these countries, based on the best practices identified. This paper is based on a comprehensive study conducted in Nepal, India and Bangladesh, observing mobility and hearing-related AT service delivery centres run by the government, as well as private and nongovernmental organisations, and interviews with key informants: policymakers (5), AT service providers (20) and AT service users (20) between December 2019 to February 2020. A descriptive, qualitative exploratory study design was followed. A quality assessment framework was used to structure the analysis and interpret the findings. AT service provisions are poorly developed in all three countries. On all quality indicators assessed, the systems show major weaknesses. AT users have very limited awareness about their rights to these services and the availability of AT services, the range of services available is very limited, and eligibility is dependent on medical criteria related to visible and severe disabilities. Lack of accessibility, eligibility, reachability and affordability are the main barriers to access AT services for PWD in Nepal, India and Bangladesh. Increased community level awareness, increased Government funding and a community based, medically informed flexible social model of AT services is a way forward to ensure access to AT services for PWD in these countries. Increased community awareness is necessary to increase access to Assistive Technology Services for Persons with Disabilities. Increased and flexible funding from the Government and philanthropists will improve rehabilitation. Establishment of community based Assistive Technology Services centres will increase access and improve rehabilitation. [ABSTRACT FROM AUTHOR]

A co-design project, consisting of individual and collective design activities, was organized with clients of a mental health service, in order to explore its potential to support people with psychosis. The group met for approximately two hours, weekly, for six months, participating in design activities and collectively deciding on the project purpose and outcome – a boardgame. The experience of one group participant (Anthony) is explored, selected as the first case study within an Interpretative Phenomenological Analytical (IPA) framework. Following IPA's ideographic focus, Anthony's case was purposefully selected, as it portrayed a detailed picture, informing theoretical reflection on designing as therapeutic. The paper includes Anthony's first-hand account, combined with an analysis of data from three semi-structured interviews, photographic evidence and a reflective diary kept by the lead researcher. Results suggest that, for Anthony, design activity: a) helps developing a sense of agency b) is experienced as grounding in reality c) contributes to the development of inter-personal relationships, and d) has a different sense of rhythm than artistic practice. These results are contextualized within literature on the lived experience of psychosis and suggest that designing can be beneficial for people with psychosis, providing the backdrop for further research and practice. [ABSTRACT FROM AUTHOR]

Purpose: Improved symptom management is a critical although unmet post-treatment need for young adult (YA) cancer survivors (aged 18–39 at diagnosis). This study aimed to develop and refine a behavioral symptom management intervention for YA survivors. Methods: Phase I: YA survivors (N = 21) and oncology providers (N = 11) completed individual interviews and an online, self-report assessment to examine symptom experiences, the need for a behavioral symptom management intervention for YAs, and perceptions about potential intervention components, structure, and format. Phase II: YA survivors (N = 10) completed user testing sessions, providing feedback on the prototype intervention materials (paper manual and mobile application), and completed an online assessment. Quantitative data were examined using descriptive statistics. Rapid qualitative analysis, a methodologically rigorous standardized approach, was used. Results: Pain, fatigue, and distress were ranked as top concerns by most YAs and providers. Phase I interviews underscored the need for a symptom management intervention for YAs. YAs and providers highlighted potential coping strategies and program format/structure suggestions (e.g., small group format) to best meet YAs' needs. A prototype intervention was developed combining the following: traditional behavioral symptom coping skills; home-based physical activity; strategies from Acceptance and Commitment Therapy and Meaning-Centered Psychotherapy; and strategies to foster self-compassion. Phase II user testing sessions highlighted strengths and suggestions for refining the prototype materials. Conclusion: Post-treatment symptoms are common for YAs. A tailored behavioral symptom management program was developed and refined with input from YAs and providers and will be examined for feasibility and acceptability in a pilot randomized controlled trial. Clinical Trial: Clinicaltrials.gov identifier NCT04035447 [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube‐feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. Aims: To explore family members' experiences of living with a spouse with post‐stroke dysphagia. Methods & Procedures: This exploratory qualitative study used one‐to‐one semi‐structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio‐recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Outcomes & Results: Five spouses aged 70–93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. Conclusions & Implications: It is important to consider family members' perspectives as they often provide vital care to loved‐ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better‐targeted support. What this paper adds: What is already known on the subject: Informal caregivers, often spouses, play a vital role in supporting the health and well‐being of older people with health conditions. The presence of post‐stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge: Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem‐solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work?: Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality‐of‐life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well‐being and patient safety. [ABSTRACT FROM AUTHOR]

This paper reflects on the value of diary methods in the context of a qualitative, longitudinal narrative inquiry exploring the higher education decision-making of further education students in England. Event-based diaries were used alongside interviews and focus groups over a 14-month period to gain in-depth insights into the reasons and influences informing their decision-making trajectories. I explore the challenges, successful approaches and advantages of employing diary methods with young people in this context. Challenges consisted of maintaining participant engagement, which was overcome by combining methods and incorporating a reactive co-participatory element. Yet, a number of advantages emerged from participants' engagement with diary keeping which enhanced the richness of the data; this inspired deeper reflections on decision-making and influences and provided a private space for participants to disclose personal difficulties that could not be obtained via interviews. [ABSTRACT FROM AUTHOR]

Accessible Summary: What is known on the subject: ●Expert by Experience participation in mental health services is embedded in mental health policy in many countries. The negative attitudes of nurses and other health professionals to consumer participation poses a significant obstacle to this policy goal.●Involving mental health Experts by Experience in the education of nursing students demonstrates positive attitudinal change. What the paper adds to existing knowledge: ●The paper presents perspectives from Experts by Experience about the unique knowledge and expertise they derive from their lived experience of mental distress and mental health service use. As a result, they can make a unique and essential contribution to mental health nursing education. They utilize this knowledge to create an interactive learning environment and encourage critical thinking.●The international focus of this research enriches understandings about how Experts by Experience might be perceived in a broader range of countries. What are the implications for practice: ●Mental health policy articulates the importance of service user involvement in all aspects of mental health service delivery. This goal will not be fully achieved without nurses having positive attitudes towards experts by experience as colleagues.●Positive attitudes are more likely to develop when nurses understand and value the contribution experts by experience bring by virtue of their unique knowledge and expertise. This paper provides some important insights to achieving this end. Introduction: Embedding lived experience in mental health nursing education is increasing, with research findings suggesting the impact is positive. To date, research has primarily targeted the perspectives of nursing students and academics from the health professions. Aim: To enhance understanding of the unique knowledge and expertise experts by experience contribute to mental health nursing education. Methods: Qualitative exploratory research methods were employed. In‐depth individual interviews were conducted with experts by experience who delivered a coproduced learning module to nursing students in Europe and Australia. Results: Participants described their unique and essential contribution to mental health nursing education under four main themes: critical thinking, beyond textbooks; interactive and open communication; understanding personal recovery; and mental health is health. Conclusions: These findings present an understanding of the unique knowledge and expertise Experts by Experience contribute to mental health education not previously addressed in the literature. Appreciating and respecting this, unique contribute is necessary as Expert by Experience contributions continue to develop. Implications for Practice: Mental health services purport to value service user involvement. Identifying and respecting and valuing the unique contribution they bring to services is essential. Without this understanding, tokenistic involvement may become a major barrier. [ABSTRACT FROM AUTHOR]

Global health practitioners and policymakers have become increasingly vocal about the complex challenges of identifying and quantifying the causes of death of the world's poorest people. To address this cause-of-death uncertainty and to minimise longstanding sensitivities about full autopsies, the Bill and Melinda Gates Foundation have been one of the foremost advocates of minimally invasive autopsy technology (MIA). MIA involves using biopsy needles to collect samples from key organs and body fluids; as such, it is touted as potentially more acceptable and less invasive than a complete autopsy, which requires opening the cadaver. In addition, MIA is considered a good means of collecting accurate bodily samples and can provide the crucial information needed to address cause-of-death uncertainty. In this paper, we employ qualitative data to demonstrate that while MIA technology has been introduced as a solution to the enduring cause-of-death uncertainty, the development and deployment of technologies such as these always constitute interventions in complex social and moral worlds; in this respect, they are both the solutions to and the causes of new kinds of uncertainties. We deconstruct the ways in which those new dimensions of uncertainty operate at different levels in the global health context. [ABSTRACT FROM AUTHOR]

Debates over the value and contribution of community hospitals are hampered by a lack of empirical assessment of the experience of patients using these services. This paper presents findings from a study which included a focus on patient and family‐carer experiences of community hospitals in England. We adopted a qualitative design involving nine case study hospitals. Data collection included interviews with patients (n = 60), carers (n = 28) and staff (n = 89). Through patients and carers highlighting the value of community hospitals feeling 'close to home', providing holistic and personalised care and supporting them through difficult transitions, the study confirms the importance of functional and interpersonal aspects of care, while also highlighting the importance of social and psychological aspects. These included having family, friends and the community close, maintaining social connections during periods of hospital treatment, and feeling less anonymous and anxious when attending the hospital due to the high levels of familiarity and connectedness. Although the experiences uncovered in this study were not uniformly positive, patients and carers placed a high overall value on the care provided by community hospitals, often arguing that these were distinctive when compared to their experiences of using other health and care services. The study suggests the need to weigh the full range of these dimensions of patient experience—functional, interpersonal, social and psychological—when assessing the role and contribution of community hospitals. [ABSTRACT FROM AUTHOR]

Integrated care systems (ICS) in England are partnerships between different health and social care organisations, to co‐ordinate care and therefore provide more effective health and social care provision. The objective of this article is to explore the role of the 'Voluntary, Community and Social Enterprise' (VCSE) sector in integrated care systems. In particular, the paper aims to examine recent experiences of the voluntary sector in responding to the Covid‐19 pandemic, and the lessons that can be learnt for integrated care provision. The article focuses on the case of Oxfordshire (UK), using a mixed methods approach that included a series of semi‐structured interviews with key informants in health and the VCSE sector as well as online surveys of GPs and organisations in the VCSE sector. These were complemented by two contrasting geographical case studies of community responses to Covid‐19 (one urban, one rural). Data were collected between April and June 2021. Interviewees were recruited through professional and community networks and snowball sampling, with a total of 30 semi‐structured interviews being completed. Survey participants were recruited through sector‐specific networks and the research arm of doctors.net.uk, with a total of 57 survey respondents in all. The research demonstrated the critical role of social prescribing link workers and locality officers in forging connections between the health and VCSE sectors at the hyper‐local level, particularly in the urban case study. In the rural case study, the potential role of the Parish Council in bringing the two sectors together was highlighted, to support community health and well‐being through stronger integrated working between the two sectors. The article concludes that enhanced connections between health and the VCSE sector will strengthen the outcomes of ICS. [ABSTRACT FROM AUTHOR]

This paper reports findings of a qualitative study examining the perceptions of 21 Australian women professionals who conduct home visiting with families experiencing intimate partner violence. There is scant evidence documenting how home visiting professionals adapted practice to address the safety concerns of women and their children within the context of the pandemic. Practitioners noted an increase in the risk level and complexity of intimate partner violence (IPV), including the ways that perpetrators weaponized the pandemic to exert power and control over women and children. Practitioners reported on their rapid adaptation of practices, to ensure the continuation of services which included moving to online delivery methods, wearing PPE, and negotiating practice from a distance. While responses to these changes were mixed, most reported their desire to continue to use online platforms post-pandemic, reporting increased safety, flexibility, and accessibility for the majority of clients. This research addresses a gap in respect of professionals' perceptions of the issues facing survivors of IPV and of their professional practice during the COVID-19 pandemic. As policies, practices, and protocols continue to adapt to the challenging environment posed by the pandemic the experiences of professionals and service users are critical to inform these changes. [ABSTRACT FROM AUTHOR]

Introduction: During the COVID‐19 lockdown in 2020, teachers had to shift their teaching and assessment to online. Formative assessment (FA) can help teachers to engage, guide and monitor students' (online) learning. However, more knowledge is needed of how teachers could use the full FA process online. Methods: In this study data from 50 secondary school teachers, who taught different grade levels and subjects and joined a FA learning network that started before and continued during the lockdown, were collected. The study investigates how they used online FA practices differently than face‐to‐face FA, what challenges and opportunities they experienced in online FA and what lessons they learned and intended to keep. This mixed methods study used data from a questionnaire, interviews and webinars that were segmented, coded and analysed. Results: Results showed that many teachers implemented new FA strategies and adopted, more often than in their face‐to‐face practice, all the five phases of the FA process in an aligned matter in online FA. Teachers indicated opportunities in stimulating student engagement and guiding and monitoring student learning more at an individual level in the online FA process, but also experienced challenges, mainly in lack of interaction online. Discussion: The sudden and necessary shift to online FA, due to the COVID‐19 lockdown, challenged teachers to more fundamentally reconsider their assessment practices and assumptions. Teachers intended to make use of these learned lessons to improve their future (blended) FA practice. Lay Description: Known about the subject matter: Online formative assessment (FA) can help teachers to engage, guide and monitor online learning.Most earlier research of online FA looked at parts of the FA process or tools.Teachers' former knowledge and skills in FA influences the online implementation.Online FA offers opportunities to promote learning, but is also challenging. What their paper adds to this: Experienced teachers were able to implement complete FA processes online.Teachers experienced that online FA could stimulate student engagement.Teachers made more time for individual help and feedback during online FA.Teachers intended to maintain these lessons learned in their future (blended) FA practice. The implications of study findings for practitioners: Combining online FA activities with face‐to‐face activities creates opportunities for future blended FA.The five phases of the FA cycle help teachers to implement FA online or in blended forms. [ABSTRACT FROM AUTHOR]

This paper draws upon the notion of slow emergency as a framework to interpret ethnographic and qualitative findings on the challenges faced by Puerto Ricans with chronic conditions and health-sector representatives throughout the island during and after Hurricane María. We conducted participant observation and qualitative interviews with chronic disease patients (n = 20) health care providers and administrators (n = 42), and policy makers (n = 5) from across the island of Puerto Rico in 2018 and 2019. Many Puerto Ricans coping with chronic diseases during and after María experienced bureaucratic red tape as a manifestation of the colonial legacies of disaster management and health care. They describe a precarious existence in perpetual 'application pending' status, waiting for services that were not forthcoming. Drawing on ethnographically informed case examples, we discuss the effects of these bureaucratic barriers on persons with three chronic conditions: renal disease, opioid dependency, and HIV/AIDS. We argue that while emergency management approaches often presume a citizen-subject with autonomous capacity to prepare for presumably transient disasters and envision a 'post-disaster future' beyond the immediate crisis, Puerto Rican voices draw attention to the longer, sustained, slow emergency of colonial governance. [ABSTRACT FROM AUTHOR]

Social determinants profoundly impact health. Many primary care practices now seek to screen their patients for health‐related social needs (HRSN) and refer them to resources in the community. However, there is little empirical evidence to guide communication with patients in order to ensure their comfort with the process and increase the likelihood that it results in positive outcomes. This paper describes the first phase of the Improving Messaging Around Gaps in Needs and rEfferals (IMAGINE) study—a multi‐phase study aiming to develop and test patient‐centred messages about screening and referral for HRSN. In this initial qualitative phase, our objective was to identify communication strategies that might make western Colorado primary care patients more comfortable with the HRSN screening and referral process. From May to July 2020 we interviewed 10 staff members responsible for HRSN screening from primary care practices participating in the western Colorado Accountable Health Communities (AHC) initiative and 20 patients from 2 of these practices. We used a rapid qualitative analysis process that involved summarising interview transcripts across key domains of interest and then identifying emergent themes within each domain using a data matrix. Through this process, we examined current communication about HRSN screening, as well as suggestions for messages and other strategies that could improve communication. In most practices, the AHC Screening Tool was handed to patients by front desk staff at check‐in with little explanation as to its purpose. Patients and staff alike recommended that patients be provided with information that: normalises the screening and referral process; assures privacy; clarifies that the purpose is to help and support rather than judge or report; emphasises community benefits; and respects patient autonomy. Interviewees also suggested broader strategies to support more effective communication, such as practice staff and clinicians building trusting relationships with patients and understanding and acknowledging the complex structural barriers that often prevent patients from accessing meaningful assistance. These findings provide actionable suggestions for improving communication about HRSN screening and referral in primary care settings. The next steps include developing specific messages based on these findings and testing their impact on screening tool completion rate, referral uptake, and patient‐reported comfort with the process. [ABSTRACT FROM AUTHOR]

Accessible Summary: What is known on the subject?: To date, the majority of the research regarding innovative psychosocial interventions in psychiatry focuses upon the development and effectiveness of the interventions. Despite the fact that these are important clinical and scientific contributions, only a small percentage of the evidence‐based interventions reach clinical practice.Cognitive Adaptation Training (CAT) is an effective psychosocial intervention to increase daily functioning and cognitive functioning in people diagnosed with severe mental illness (SMI) in inpatient and outpatient psychiatric care.Despite knowledge on the intervention's effectiveness, systematic use of CAT in the daily routine of mental health nurses is insufficient. What the paper adds to existing knowledge?: To date, no research is available that describes the factors associated to the implementation of CAT from a nursing perspective.This research also adds to the literature on rehabilitation in people diagnosed with SMI in an inpatient setting.The results contribute to the science of implementing interventions in long‐term psychiatric care and may help future interventions in their implementation process. What are the implications for practice?: This study highlights that multiple factors need to be considered when implementing an intervention in routine care and that it is a complicated process.Future implementation initiatives require ongoing training and supervision of CAT specialists, appointment of local champions to increase commitment among nursing staff and inclusion and commitment of management to overcome organizational barriers.Without acknowledging the presence of barriers to implementation and considering strategies to overcome these barriers, sustainable implementation is likely to be unsuccessful. Introduction: Evidence‐based interventions in psychiatry often fail to reach clinical practice. Cognitive Adaptation Training (CAT) is an evidence‐based psychosocial intervention that aims to improve daily functioning of people diagnosed with a severe mental illness. Implementation of CAT remains challenging, despite demonstrated effectiveness. Aim: Identifying facilitators and barriers of CAT on the intervention, nursing, and organizational levels, and investigating relationships between capability, opportunity, motivation, and appraisal using the COM‐B model. Method: The Measurement Instrument for Determinants of Innovations and CAT‐specific questions were administered to 46 nurses. The relationship among capability, opportunity, motivation and appraisal was calculated using the Pearson's r correlation coefficient. Results: Nine barriers (mostly organizational level) and 13 facilitators (mostly intervention and nursing level) were identified. Significant moderate correlations were found between capability and opportunity, capability and motivation, capability and appraisal and a strong correlation between motivation and appraisal. Discussion: The results suggest that barriers at the organizational level should be removed and facilitators at intervention and nursing levels may be exploited to improve implementation. Implications for practice: Future implementation initiatives require ongoing training and supervision of CAT specialists, appointment of local champions to increase commitment among nursing staff and inclusion and commitment of management to overcome organizational barriers. [ABSTRACT FROM AUTHOR]

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

Background: Global literature on medical travel focuses on patients from high-income countries traveling to middle-income countries reputed for providing high quality care at significantly lower costs. However, little is known about the movement of wealthy foreign patients to high-income countries such as the USA, the UK or Switzerland. Objective: In this paper, we focus on Swiss medical tourism stakeholders and their strategies to attract a niche of self-paying foreign patients to undergo medical treatment in Switzerland. We describes how they harness the label of 'Swiss quality' healthcare to promote Switzerland in global medical travel industry. Methods: We conducted semi-structured, in-depth interviews with 30 medical tourism stakeholders including 15 healthcare professionals (HCPs) treating self-paying foreign patients in publicly funded and privately owned hospitals in French- and German-speaking regions of Switzerland. The data were inductively coded using thematic analysis. Results: We present their views on 'Swiss quality' healthcare under three themes: health-related human resources, Swiss medical infrastructure, and foreign patients' perceived trust in the 'Swiss quality' label. Participants equated Switzerland's global image and 'Swiss quality' as a 'brand' and believed that foreign patients' trust in 'Swiss quality' is a unique selling point of Swiss healthcare system. Conclusion: By problematizing the use of 'Swiss quality' label to attract wealthy patients to Switzerland, we highlight a few ethical questions that deserve further scrutiny. [ABSTRACT FROM AUTHOR]

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

Dementia affects majority of older residents in nursing homes and physiotherapists are regularly involved with this population. However, little is known about the role of physiotherapists who treat residents with dementia in nursing homes. The aim of this paper was to report on an interpretivist qualitative exploration of the perceptions of both the providers of and referrers to domiciliary physiotherapy for residents with dementia in nursing homes in London. In 2015, we conducted semi‐structured interviews with 10 purposively sampled participants – two were providers of physiotherapy for residents with dementia in nursing homes, five were referrers to these providers and three occupied dual roles. A thematic analysis of the verbatim transcripts identified three main themes. First were perceptions of a multifaceted but unclear role, focused on both conventional 'physical' physiotherapy interventions and specialist care, the latter being reliant on knowledge and confidence that physiotherapists did not always feel they possessed. Second were the stated challenges to the role, including the focus and organisation of the nursing home setting, with perceived lack of emphasis on rehabilitation; the progressive and demanding nature of dementia itself; a lack of continuity of nursing home and visiting health professional staff with associated need to entrust physiotherapy intervention to multiple others and the final challenge was the difficulty measuring impact. Third, despite the challenges, enablers of the role were experienced, namely collaborative working and positive previous experiences of referrers. Joining these themes were underpinning concepts of complexity and uncertainty in relation to the physiotherapy role in this setting. This paper highlights a need for enhanced collaborative working in clinical practice, enabled at organisational level, to help address some of the uncertainties expressed around the physiotherapists' role with residents with dementia in nursing homes and thereby enable improvements to processes and outcomes of their interventions. [ABSTRACT FROM AUTHOR]

Background: Several studies have suggested that practitioners hold speech and language therapy (SLT) practice as tacit and consequently it is difficult for the therapist to describe. The current study uses a range of knowledge elicitation (KE) approaches, a technique not used before in SLT, as a way of accessing this tacit knowledge. There is currently no agreed framework that establishes key factors underpinning practice for preschool children with speech and language disorders. This paper attempts to address that gap. Aims: To develop a framework of SLTs' practice when working with preschool children with developmental speech and language disorders (DS&LD). Methods & Procedures: A mixed‐methods approach was adopted for this study. Data were collected iteratively, from 245 SLTs with experience of working with preschool children with DS&LD across sites in England, by means of focus groups and national events. There were three stages of data collection: local sites, specific‐interest groups and two national events. KE techniques were used to gather data, with initial data being collected in local site focus groups. Findings from groups were taken to subsequent larger groups where a combination of concept mapping, teach‐back and sorting exercises generated a more detailed description of practice, using discussion of consensus and disagreement to stimulate further exploration and definition and provide validatory evidence. Outcomes & Results: This paper provides a high‐level framework of therapy for preschool children with DS&LD that makes practice explicit in this area. The framework proposes that therapists' aims for this group of children fall into three categories: addressing children's areas of impairment and skills; achieving functionally meaningful skills and carryover; and supporting adults to provide a supportive communication environment. The exact configuration is shaped by the child's context and needs. Conclusions & Implications: The framework highlights themes that are well researched in the literature (e.g., speech) and others that have been little studied (e.g., adult understanding), indicating a disconnect between research evidence and practice. The research also highlights the complex nature of interventions for preschool children with DS&LD and the importance therapists attribute to tailoring therapy to individual needs. The framework provides a scaffold upon which SLTs can focus their clinical practice and encourages the profession to understand and explore better the gaps between research evidence and clinical practice for preschool children with DS&LD. [ABSTRACT FROM AUTHOR]

Arts programming can amplify youth voice, creative self-expression, and promote civic engagement and social change. This paper describes a case study of a youth participatory action research at an arts organization in the northeast of the U.S. that promoted youth participation, critical reflection, and action. Field observations and individual interviews with adult and youth staff were conducted and analyzed using thematic analysis. Findings suggest YPAR represented an opportunity for youth to develop critical consciousness, leadership skills, and create change. Adults integrated opportunities for youth to lead in arts dissemination and action initiatives. Implications and challenges including sustainability were identified. [ABSTRACT FROM AUTHOR]

This qualitative study is part of a project aiming to evaluate a community-based approach to the delivery of intermittent preventive treatment of malaria in pregnancy with sulfadoxine-pyrimethamine (IPTp-SP) through community health workers (CHWs) in four sub-Saharan African countries: the Democratic Republic of Congo (DRC), Madagascar, Mozambique and Nigeria. The study aimed to understand the factors that influence the anticipated acceptability of this intervention. A total of 216 in-depth interviews and 62 focus group discussions were carried out in the four country sites with pregnant women, women of reproductive age, community leaders, pregnant women's relatives, CHWs, formal and informal health providers. Grounded theory guided the study design and data collection, and content and thematic analysis was performed through a comparative lens. This paper focuses on one crosscutting theme: trust-building. Two mechanisms that underpin communities' trust in delivery of IPTp via CHWs were identified: 'perceived competence' and 'community and healthcare system integration'. Communities' perception of CHWs' competence shapes their trust in them, which suggests that CHWs' credentials should be made public and that specialised training in maternal health is required for them. Integration depends on the promotion of socially embedded practices and the involvement of formal healthcare systems in CHWs' work. [ABSTRACT FROM AUTHOR]

In the UK support for older people living in residential care to undertake meaningful activities is provided by Activities Co‐ordinators. There is also a growing trend for care home providers to invite arts organisations into care settings to deliver a range of arts and cultural activities. These arts and cultural activities are delivered by Arts Facilitators, who are distinct from Activities Co‐ordinators because their practice is specifically in an art form. This paper presents findings from the Creative Journeys research project which focused on exploring the role of participatory arts within residential care home in developing and maintaining social relationships between residents and staff. One of the objectives of the research was to identify factors which facilitated or hindered the delivery and impact of the activities. Data collection methods included observations and semi‐structured interviews with residents and staff. Thematic analysis was conducted on the qualitative data. It was found that a key factor in the successful delivery of the groups was the working relationship between the Arts Facilitators and the Activities Co‐ordinators. This relationship is explored and presented under three main themes: the collaborative process, practicalities and preparation and the approach of the Arts Facilitator. The Activities Co‐ordinators' role is an under‐researched area, but they play a central role in supporting visiting arts organisations to deliver the sessions and in enabling residents to attend and engage with meaningful activities. [ABSTRACT FROM AUTHOR]

Objectives: To understand how various decision-making dynamics interact to shape the risk-management choices of African American women at high-risk of breast cancer, and to explore whether African American and White women have differential access to the information and interactions that promote proactive, confident risk-management behavior. Design: This paper draws on 50 original in-depth, semi-structured interviews with African American and White women at elevated risk of breast cancer. We used inductive grounded-theory methodology to explore the processes by which women make risk-management decisions and to compare those processes between racial groups. Moving backward from women's decisions about whether or not to engage in specific risk-management behaviors, we explored the patterns that underlie behavioral decisions. Results: We find that decisions to engage in risk-management behavior rest on three accumulated layers of information. The layer most proximal to making risk-management decisions involves specific information about risk-management options; the middle layer involves general information about managing breast cancer risk; and the foundational layer involves personal perceptions of breast cancer risk and prevention. African American and White women experience distinct dynamics at each of these levels, and these differences may help explain racial differences in risk-management behavior. Compared to their White counterparts, African American women faced additional burdens at every step along the risk-management journey. Conclusion: These findings suggest that information gathering is more complex than has previously been addressed, that information access and provider access are closely related, and that African American women may be systematically disadvantaged with respect to information-generating experiences. Preventing cancer morbidity and mortality requires that all high-risk women have access to the layers of information necessary to engage in cancer screenings and preventive interventions. These results exemplify the ways that structural, social, and interpersonal inequalities combine to influence risk-management choices. [ABSTRACT FROM AUTHOR]

Participatory research methodologies have expanded the opportunities for critical, emancipatory and democratic health and social work research. However, their practical application in research with vulnerable participants has historically been challenging due to ethical, practical and theoretical concerns. Individuals who are homeless are typically seen as 'hard-to-reach', transient, 'hidden' and even chaotic participant populations. Unsurprisingly, examples of the use of innovative participatory research techniques with those groups have been relatively scarce. This paper aimed to address this gap by discussing the application of one such technique – the mobile phone diary in research with multiply disadvantaged homeless adults. Diary methods are situated within the qualitative research on health, illness and social marginality, and the enhanced capabilities of the mobile phone diary are highlighted. The author illustrates the application of the mobile phone diary in his participatory research on the everyday life narratives of adults with serious mental illness (SMI) who were homeless. The process of designing the mobile phone diary is detailed. Following this, participant testimonies of their use of the mobile phone diary are presented. They demonstrate the participatory and inclusive nature, as well as the cathartic and empowering potential, of this technique. The methodological contributions and challenges and the theoretical generativity of the mobile phone diary method are discussed. The mobile phone diary is a feasible approach for eliciting evocative, contextualised and nuanced accounts of the lived experience of homelessness, social isolation, coping and recovery. [ABSTRACT FROM AUTHOR]

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

The present study seeks to survey information and training needs of informal caregivers related to the use of assistive technologies at home, so as to, in the near future, try to meet them. Therefore, the full aim of this study is to contribute to reducing technology abandonment and to enhancing its use in the family setting by children with cognitive and/or motor limitations. Content analysis of a set of ten interviews with informal caregivers of children and youngsters with cognitive and/or motor disabilities. Assistive technologies open a wide range of opportunities, mostly to students whose learning skills diverge from standard development. They promote communication, independence as well as inclusion of children with cognitive and/or motor disabilities. Despite the human and material resources available, the implementation of assistive technologies in many family settings is still a struggling task. The results reveal a perspective on (i) the interaction between those caregivers and their children, (ii) children's skills in using assistive technology, (iii) caregivers' digital literacy and (iv) their training needs. The present paper highlights the fact that carrying out interviews with informal caregivers leads to obtaining significant data for a diagnosis of the use of assistive technologies in the family setting and to assess the needs of informal caregivers. From this study, the need to provide caregivers with further training on assistive technologies emerges as preponderant, and to improve caregivers' skills in the search for and access to practical information. Cognitive and/or motor disabilities impact on communication, independence and also on the full inclusion of children, especially when efforts developed at school do not have any follow up at home. Endowing informal caregivers with the knowledge and skills to use assistive devices with their children is a step forward to their full development. Interviews conducted with informal caregivers are a means to gaining insights into understanding the reasons behind assistive technology abandonment at home. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Electroconvulsive therapy (ECT) has existed worldwide for nearly 80 years. ECT is a fast‐working and potentially life‐saving treatment, but it is considered controversial. Although frequently mentioned, stigmatization in relation to ECT has not been systematically explored so far. What this paper adds to existing knowledge?: This paper provides new insight into both recipient and expert perspectives on ECT. It identifies several issues of stigmatization related to ECT and suggests that full recovery following ECT might be jeopardized due to both stigmatization and self‐stigmatization. The study suggests that most of the stigmatizing behaviors can be ascribed to (a lack of) available knowledge of and experience with ECT. What are the implications for practice?: Being aware of and listening to the needs of former ECT‐recipients seems essential to increase their treatment options and support care as well as a will to prioritize this patient group. For example, by addressing the potential stigma issues in follow‐up groups and helping to distribute sober, factual information about ECT in society. Providing written information and psychoeducation for patients and relatives before, during, and after ECT, in addition to supporting active use of diaries, might be valuable remedies for helping patients feel adequately informed and able to accept the pros and cons of ECT during and after treatment period. Abstract: Introduction: Electroconvulsive therapy (ECT) has existed worldwide for nearly 80 years. Although fast‐working and potentially life‐saving treatment, ECT is regarded as a strongly controversial treatment and stigmatization is frequently mentioned in relation to it. However, no systematic research in this area has taken place so far. Aim: The aim of this qualitative study was to explore the experiences and attitudes of former recipients of ECT and of experts professionally involved with ECT to identify potential stigmatization. Method: Two focus groups, one comprising four recipients of ECT and the other seven professional experts, were conducted. Data from each focus group were analyzed separately using a framework‐analysis. Results: The analysis yielded three major themes for the first focus group interview: ambivalent attitudes, discrediting and exclusion, and survival strategies and three major themes for the second focus group interview: dramatic depictions of ECT, an overlooked and rare treatment, and anti‐stigmatization strategies. Discussion and implications for practice: Stigmatizing attitudes and behaviors in relation to ECT are closely related to one's personal and factual knowledge, and there is a great need for multi‐facetted approaches if social acceptance and recognition are to be achieved. This study provides new knowledge on a scarcely examined area while also introducing suitable methods for anti‐stigmatization and empowerment. [ABSTRACT FROM AUTHOR]

Summary: The social work profession emphasises the development of the personal qualities of social workers in addition to requiring them to possess the necessary professional values, knowledge, theories and practice skills. Until now, we have tended to rely on the perspective of social work professional bodies, educators and employers to assess the personal qualities of social workers. We have seldom inquired about the views of service users on the qualities of social workers, thus disregarding their perspective. This article focuses on identifying the important qualities of social workers from the perspective of service users. Findings: This paper reports on qualitative research on the personal qualities of social workers that service users value in Hong Kong. It draws on a diverse range of service users with direct experiences of the services provided by social workers. A total of 47 service users from 7 core social welfare service settings and 32 service units participated in an in-depth qualitative interview. Six significant personal qualities of social workers from the service users' perspective are identified and discussed. Applications: The findings have several implications for examining directions for development of the social work profession, the relationship between service users and social workers, effective ways to develop the personal qualities of students in social work education and ways to resolve the dilemma between service users' expectations and the existing mode of social work service delivery. Issues of particular relevance to Hong Kong are highlighted in discussing these implications. [ABSTRACT FROM AUTHOR]

The aim of this paper is to report the findings of the consultation rounds with former patients and health care professionals to inform the design of a qualitative study. We aimed to understand stakeholders' views regarding the relevance of a proposed study looking at the impact of patients witnessing cardiopulmonary resuscitation on other patients in hospital, the appropriateness of the proposed methodology and ethical aspects. We conducted an online survey (n = 22) and telephone interviews (n = 4) with former patients linked to the British Heart Foundation charity and a focus group (n = 15) with hospital health care professionals involved in cardiopulmonary resuscitation activities. Data were analysed using thematic analysis. The consultation rounds provided valuable advice on three major themes: conceptual aspects, methodological aspects and practical suggestions. The conceptual aspects were related to the relevance of the proposed study, the emotional impact for participating patients and how the social interaction among patients could influence the witnessing experience. Methodological advice included recruitment strategies and data collection methods such as the use of individual and focus group interviews, the timeframe of interviews with patients and the topics of the interview guides. In the third theme, practical suggestions were provided, such as strategies to advertise the study, improving the public's and participants' engagement throughout the study process and disseminating the findings. Overall, the study proposed in this consultation was considered relevant and worthy by patients and health care professionals to raise awareness and generate new evidence on an unconsidered aspect of cardiopulmonary resuscitation and of patients' hospital experience. These stakeholders' consultation rounds constituted a valuable exercise to design high‐quality research based on a shared vision among researchers, service users and clinicians. They also provided pragmatic advice to inform critical care practice to support patients witnessing cardiopulmonary resuscitation in hospital. [ABSTRACT FROM AUTHOR]