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Background: Shared responsibility is an essential part of family-centred care and it characterizes the relationship between parents and healthcare professionals. Despite this, little is known about their shared responsibility for decision-making in neonatal intensive care units. Aim: The aim of this scoping review was to identify previous studies on the subject and to summarize the knowledge that has been published so far. Method: The review was conducted using electronic searches in the CINAHL, PubMed, Scopus and PsycINFO databases and manual searches of the reference lists of the selected papers. The searches were limited to peer-reviewed papers that had been published in English from 2010 to September 2021. The data were selected based on inclusion and exclusion criteria and the findings were inductively summarized. We identified eight papers that met the inclusion criteria. Ethical considerations: The scoping review was conducted according to good scientific practice by respecting authorship and reporting the study processes accurately, honestly and transparently. Results: The results showed that shared responsibility for decision-making was based on the parents' intentions, but the degree to which they were willing to take responsibility varied. The facilitating and inhibiting factors for shared responsibility for decision-making were related to the communication between parents and professionals. The impact was related to the parents' emotions. Conclusion: It is essential that parents and professionals negotiate how both parties will contribute to their shared responsibility for decision-making. This will enable them to reach a mutual understanding of what is in the infants' best interests and to mitigate the emotional burden of decisions in neonatal intensive care units. More research is needed to clarify the concept of shared responsibility for decision-making in this intensive care context. [ABSTRACT FROM AUTHOR]

Background: Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich community assets. It was held in person over 8 days in May 2023. Objectives: To evaluate the reach and impact of Good Grief Weston festival and gather data to inform future festivals. Design: Mixed methods evaluation (survey and focus groups). Methods: Online and paper surveys assessing participants' characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers. Results: Approximately 3000 people attended the festival. Of 204 completed surveys, 64.5% were from women, age range ⩽15 to ⩾75 years; 88.2% identified as White; 14.9% deaf, disabled/with a chronic condition; 18.9% neurodivergent; 9.0% gay, bisexual or queer. Festival participants were entertained (70.9%), inspired (68.5%), felt part of a like-minded community (54.3%), talked to someone new (49.2%), learnt about grief/bereavement (34.3%), shared or expressed experiences (30.3%) and found out about local support (19.7%). 71.3% reported that they felt more confident talking about grief after attending. Median experience rating was 5 (IQR 0; possible range 1 = poor to 5 = excellent). In free-text comments, participants expressed appreciation for the festival and described benefits in attending. Two focus groups were conducted (n = 8 participants, all women), lasting c.1.5 h. Focus groups added rich descriptions of the festival's value, and data to inform the next festival. Conclusion: Findings suggest festivals of this nature can play a central role in a public health approach. Plain language summary: What was the impact of Good Grief Weston festival? Why was the study done? Previous studies have shown that many people feel unsupported by their community after the death of a loved one. We designed a festival to improve knowledge and support for bereaved people. We did this study to assess how the festival affected the people who attended. What did the researchers do? The team included researchers and people and organisations from the local community. Together, we designed and ran a festival on the topic of death, grief and bereavement in Weston-super-Mare, a coastal town with areas of high deprivation. The festival took place over an eight-day period in May 2023 and included creative, interactive and educational events. The team collected feedback on attendees' experiences of the festival. We did this using online and paper feedback forms, postcards, and focus groups to collect as many opinions as possible. What did the researchers find? We found that a wide range of people attended the festival. Most people who took part in the research rated the festival as 'excellent'. They told us they learnt about grief and bereavement and found out about local support services. Attendees met new people, shared their experiences, and felt that the festival built community spirit. They also made suggestions to improve any future festivals. What do the findings mean? The findings show that in-person festivals can effectively engage the public on the topic of death, grief and bereavement. They can also help develop connections between people and organisations in communities. These connections and learning opportunities may help communities to support their members through bereavement. [ABSTRACT FROM AUTHOR]

This paper argues that trust cannot be taken for granted in long-term participatory research and promotes greater consideration to conceptualizing the trusting process as fluid and fragile. This awareness by researchers can reveal to them how the passing of time shapes and reshapes the nature of trusting relationships and their constant negotiation and re-negotiation. The paper draws together literature from different disciplines on the themes of trust, temporality and participatory research and outcomes from interviews and workshops undertaken for The Trust Map project to focus on two key moments that reveal the fragility of trust. These are the subtlety of disruption and trust on trial and trust at a distance. We discuss how trust was built over time through processes of interaction that were continually tested, incremental and participatory. [ABSTRACT FROM AUTHOR]

The purpose of this study is to provide an overview of patients' experiences using a precision medicine (PM) clinic that conducts pharmacogenomics-based (PGx) testing for adverse drug reactions. The study aimed to identify the features of the clinic valued most by patients and areas for improvement. A paper survey was used to collect data. Survey questions focused on patients' perceptions of the PM testing and the overall clinic experience. Sixty-seven patients completed the survey. Quantitative data were analyzed using SPSS and frequencies were reported. Open-ended responses were coded and organized thematically. Patients reported that the clinic services increased confidence in their medication usage. Feeling respected by staff, receiving education, and quick appointments were highly valued by patients. Suggested areas for improvement included better communication from the clinic to patients, expansion of clinic services, and education for other healthcare providers. The findings demonstrate that patient experience goes beyond the clinical care provided. Current and potential future providers of PM should invest the time and energy to configure their care delivery system to enhance the patient experience. [ABSTRACT FROM AUTHOR]

In Bauchi State, northern Nigeria, communities recognise short birth interval (kunika in the Hausa language) as harmful, but family planning is a sensitive topic. This paper describes the development of a culturally safe way to communicate about kunika in a conservative Muslim setting. The objective was to co-design culturally safe communication material, based on local knowledge about short birth interval, to share with women and men in households. Six community co-design groups of women and six of men (total 96 participants) reviewed summaries of their previously created maps of perceived local causes of kunika, categorised as frequent sex, family dynamics and non-use of contraception. They advised how these causes could be discussed effectively and acceptably with women and their husbands in households and suggested storylines for three short video docudramas about the prevention of kunika. The research team created the docudramas with a local producer and fieldworkers piloted their use in households. The design groups advised that communication materials should focus on child spacing rather than on limitation of family size. Even sensitive issues could be covered. People would not change their sexual behaviour but could be advised to use contraceptives to prevent kunika. The groups approved the final videos and six focus groups of visited women and men reported they were acceptable and helpful. Community co-design of communication about kunika was feasible and led to videos about a sensitive topic that were acceptable to ordinary men and women in communities in Bauchi. [ABSTRACT FROM AUTHOR]

Lay abstracts are brief descriptions or summaries of research that are targeted at a general audience. They are held as an important means for the research community to provide greater transparency to the general public and to increase visibility of the pertinent research. This study aims to examine the extent to which lay abstracts published in the journal Autism are comprehensible to a lay audience in terms of readability measures. Results showed that lay abstracts published in Autism were more readable than their corresponding abstracts but were less readable than plain English texts (e.g. news reports). To our knowledge, this is probably the first comparative study on the readability of lay abstracts. Possible explanations for and implications of these findings were offered. Research papers are sometimes hard to follow. Lay abstracts give a short account of research papers. However, it is unclear whether lay abstracts are readable to the lay people. This study examined the readability of 570 abstracts and lay abstracts published between 2020 and 2022 in the journal Autism. We found that that lay abstracts are easier to read than abstracts but are harder to read than news reports. The findings suggest that lay abstracts, on average, are hard to read for the lay people. We propose that the journal and its authors may invite reviewers from outside the research community to test whether a lay abstract is readable. [ABSTRACT FROM AUTHOR]

Emotionally-based school avoidance (EBSA) is an important driver of persistent school absenteeism and may have worsened in the context of COVID-19. This paper describes the development of a brief parent-focused psychosocial intervention with the goal to address the lack of accessible early interventions for EBSA. The developmental process used a person-based approach with two phases. In Phase 1, qualitative data were collected about intervention preferences and priorities from N = 10 parents and N = 7 practitioners in a series of co-design workshops. Phase 2 refined an intervention blueprint based on iterative consultations with N = 4 parents and N = 3 practitioners. Framework analysis was used to organise findings around key intervention parameters, including relevant mechanisms, content, and delivery methods needed to provide effective, acceptable and feasible support for families affected by EBSA. The resulting blueprint incorporates three online modules to be delivered over three weeks with each module consisting of psychoeducational videos, self-completed learning tasks and a corresponding coaching session. Respective module content includes: (i) self-care strategies to increase parent wellbeing and self-efficacy; (ii) parenting strategies to change behavioural patterns that maintain child distress and avoidance of school; and (iii) strategic communication strategies to increase the quality of home-school relationships. The blueprint has been developed into a full prototype for a forthcoming feasibility study. Plain language summary: Since the onset of the Covid-19 pandemic, there has been a noticeable increase in children missing school. One significant contributor to this rise in absences is Emotionally-Based School Avoidance (EBSA). EBSA refers to a situation where a child stays home from school due to feelings of anxiety and distress about attending. Accessing timely support for children with EBSA can be difficult due to lengthy waiting lists for child and adolescent mental health services. This paper outlines the creation of a new, brief psychosocial intervention aimed at helping parents support their child experiencing EBSA. The development process involved two phases. In the first phase, we collaborated with 10 parents and 7 practitioners to gather ideas about the kind of support families require, what should be included in the intervention, and how to make it practical for families to use. Based on these discussions, we formulated a plan for the new intervention. The second phase refined this plan of the intervention to ensure its suitability for families. The intervention is called ISAAC: Intervention for School Anxiety and Absenteeism in Children. ISAAC consists of three online modules to be completed by parents over a three-week period. Each module includes videos, reflection activities and homework tasks which help the parent learn a new skill or try a different way of responding to their child's anxiety about attending school. Parents are also supported by a coach. The first module encourages parents to take care of their own wellbeing and manage stress. The second module helps parents to learn new ways to respond to their child's distress related to school attendance, while the third module provides guidance on effective communication with the child's school. The next step for this intervention is to see whether it is agreeable to parents and practical to deliver in the real-world. [ABSTRACT FROM AUTHOR]

Introduction: Throughout the COVID-19 pandemic, primary care nurses were often redeployed to areas outside of primary care to mitigate staffing shortages. Despite this, there is a scarcity of literature describing their perceptions of and experiences with redeployment during the pandemic. Objectives: This paper aims to: 1) describe the perspectives of primary care nurses with respect to redeployment, 2) discuss the opportunities/challenges associated with redeployment of primary care nurses, and 3) examine the nature (e.g., settings, activities) of redeployment by primary care nurses during the COVID-19 pandemic. Methods: In this qualitative study, semi-structured interviews were conducted with primary care nurses (i.e., Nurse Practitioners, Registered Nurses, and Licensed/Registered Practical Nurses), from four regions in Canada. These include the Interior, Island, and Vancouver Coastal Health regions in British Columbia; Ontario Health West region in Ontario; the province of Nova Scotia; and the province of Newfoundland and Labrador. Data related to redeployment were analyzed thematically. Results: Three overarching themes related to redeployment during the COVID-19 pandemic were identified: (1) Call to redeployment, (2) Redeployment as an opportunity/challenge, and (3) Scope of practice during redeployment. Primary care nurses across all regulatory designations reported variation in the process of redeployment within their jurisdiction (e.g., communication, policies/legislation), different opportunities and challenges that resulted from redeployment (e.g., scheduling flexibility, workload implications), and scope of practice implications (e.g., perceived threat to nursing license). The majority of nurses discussed experiences with redeployment being voluntary in nature, rather than mandated. Conclusions: Redeployment is a useful workforce strategy during public health emergencies; however, it requires a structured process and a decision-making approach that explicitly involves healthcare providers affected by redeployment. Primary care nurses ought only to be redeployed after other options are considered and arrangements made for the care of patients in their original practice area. [ABSTRACT FROM AUTHOR]

Research has consistently established the positive impact of sharing books with young children. Evidence suggests several important factors when evaluating book sharing with young children, including the quality of educator practice = and the nature of groupings, as well as the frequency and duration of book sharing sessions and access to books. Other evidence suggests book sharing may be particularly important for children from low ses backgrounds attending early learning settings. This paper reports on a larger study which investigated the factors and relationships influencing the use of children's literature to support principles of diversity in kindergarten rooms of long day care centres. A mixed methods approach was adopted and a convergent design was employed to synthesise the qualitative and quantitative data and interpret significant relationships and their meanings. The quality of educator practice was measured through the Systematic Assessment of Book Reading (SABR) and Children's engagement in book sharing was assessed using the Children's Orientation to Book Reading Rating Scale. Detailed analysis of 148 video recorded book sharing sessions produced statistical representations of the frequency and duration of book sharing across the contexts and the nature of involvement of the children in the study. Twenty four educators and 110 children from four long day care centres in Western Australia participated. Data were collected through semi-structured interviews, video-based observations, field notes, document analysis and a book audit. The results showed that while the children in this study had a range of book sharing experiences, few of these were frequent or of high quality. Of great concern is the finding that the children in this study most likely to be considered at risk of educational disadvantage were those with the least exposure to book sharing in general, and, even less so, to high quality book sharing, raising concerns about equitable outcomes for them. [ABSTRACT FROM AUTHOR]

In this paper, we explore how existential aspects of being diagnosed and living with cancer are shared in stories that are publicly communicated online. Through a narrative analysis of online texts and blogs, we explore how people deal with their cancer experiences, how cultural norms about illness are expressed in their stories and why they write and publish their stories online. We found that the writers described cancer diagnosis as a defining moment in their lives. They portrayed it as a crisis that was followed by unpredictability, doubt, grief and loss, fitting with the term 'existential uncertainty'. Writing and sharing their stories online, connecting with others and staying positive were ways of dealing with this uncertainty. These naturally occurring data offer insights into phenomena that are not easily accessed in a clinical setting; moreover, they provide unique insights into the cultural norms in which online illness narratives are embedded. [ABSTRACT FROM AUTHOR]

Background: Experiences of living with and seeking care for multimorbidity is a relatively under-researched field. By analysing experiences of people with multimorbidity, caregivers and care professionals, we can better understand the complex care needs of those with multimorbidity and identify improvements to care management. This paper reports findings from research that elicited the views of key stakeholders to inform future care practice and policy. Aim: To elicit care recipient and care provider views to understand the care needs of those living with and seeking care for multimorbidity. Method: A qualitative interview study using purposive sampling of those living with and providing care in multimorbidity. Results: Increased support to those with multimorbidity and caregivers to navigate care systems was advocated. Establishing trusting care relationships featured prominently in participants accounts. Fragmented care, inadequate coordination and poor communication between care providers, were identified as system-wide challenges. There was agreement that integrated care models were needed, which delivered personalised care, such as shared decision-making, choice in care options and accessing services, and individualised care plans. Conclusion: We found significant agreement among stakeholders on care need and management in multimorbidity. Understanding the experiences of those with multimorbidity, caregivers and care professionals, can inform future improvements in care management. [ABSTRACT FROM AUTHOR]

Reducing the prevalence of acute kidney injury (AKI) is an important patient safety objective set forth by the National Quality Forum. Despite international guidelines to prevent AKI, there continues to be an inconsistent uptake of these interventions by cardiac teams across practice settings. The IMPROVE-AKI study was designed to test the effectiveness and implementation of AKI preventive strategies delivered through team-based coaching activities. Qualitative methods were used to identify factors that shaped sites' implementation of AKI prevention strategies. Semi-structured interviews were conducted with staff in a range of roles within the cardiac catheterization laboratories, including nurses, laboratory managers, and interventional cardiologists (N = 50) at multiple time points over the course of the study. Interview transcripts were qualitatively coded, and aggregated code reports were reviewed to construct main themes through memoing. In this paper, we report insights from semi-structured interviews regarding workflow, organizational culture, and leadership factors that impacted implementation of AKI prevention strategies. [ABSTRACT FROM AUTHOR]

How can non-autistic adults facilitate social learning with children on the spectrum? A new theoretical understanding of autism is currently emerging that has made this question more relevant than ever. At the intersection of two growing research areas in the field of autism, the borderland that separates the experience of social interaction between neurotypes is increasingly mapped out. By integrating anthropological research on autistic sociality and the neurocognitive framework of predictive processing, this paper explores the question: If autistic people experience the world in a fundamentally different way, what is a meaningful strategy for supporting them in developing their socialities? Methods: The paper reports an in-depth analysis of a 2-min sequence in which a non-autistic adult facilitates a collaboration game between three autistic children (8–12 years). The data comes from a participatory research project that develops a new pedagogical approach to social learning based on open-ended construction play. The analytical strategy is informed by conversation analysis. Results: We find that the facilitation supports the children in accomplishing social interaction and collaboration, but it also in several instances gives rise to misunderstandings between the children. Whereas the facilitator aims to support the children's direct verbal communication about the construction task, we observe that the children use a broad repertoire of non-direct communication strategies that enables them to coordinate and align their shared process. We find that the children's actions with their hands in the construction task count as turns in the communication. Regarding the play-based learning environment, we find that the children are engaged in the shared construction task and that they competently navigate social tension when it arises without the facilitator's help. Conclusion: We conclude that the misunderstandings between the children created by the facilitation from a non-autistic adult emerge from a discrepancy of attention in the situation. The facilitator focuses on the words, but the children focus on the task. Even though this discrepancy is not necessarily a result of different neurotypes, we find that it emerges from the social dynamics of facilitation by non-autistic adults that is key in many social intervention settings. Furthermore, we conclude that the play-based learning environment enables the facilitator to support the children without directly instructing them in their social behavior. This appears to give the children an opportunity to acquire complex social experiences through their collaboration. Implications: The interaction dynamics in the data clip is shaped by the non-autistic adult's expectations of the children's interaction. This made us wonder whether we can establish a learning environment that begins from the learners' perspectives instead. The analysis caused us to change the facilitation strategy that we employ in our project. It is our hope that our approach will inspire reflection and curiosity in researchers and practitioners who develop social interventions targeting autistic people. [ABSTRACT FROM AUTHOR]

Partnerships between public health and faith-based organizations draw on the strengths of both sectors to achieve a shared interest in promoting health and reducing disparities. However, information about implementation of faith and public health partnerships-particularly those involving diverse racial-ethnic groups-is limited. This paper reports on findings from qualitative interviews conducted with 16 public health and congregational leaders around the country as part of the early phase of the development of a faith and public health partnership to address health disparities in Los Angeles, CA. We identified eight themes regarding the barriers and facilitators to building faith and public health partnerships and distilled these into 10 lessons for developing such approaches. These interviews identified that engaging religious organizations often requires building congregational capacity of the congregation to participate in health programs; and that trust is a critically important element of these relationships. Further, trust is closely related to how well each organization involved in the partnership understands their partners' belief structures, approaches to addressing health and well-being and capacities to contribute to the partnership. Tailoring congregational health programs to match the interests, needs and capacity of partners was identified as an important approach to ensuring that the partnership is successful. But, this is complicated by working across multiple faith traditions and the racial-ethnic backgrounds, thus requiring increased and diverse communication strategies on the part of the partnership leadership. These lessons provide important information for faith and public health leaders interested in developing partnered approaches to address health in diverse urban communities. [ABSTRACT FROM AUTHOR]

Background: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. Aim: To explore what works best to promote family carers' experiences of hospice-at-home. Design: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. Setting/participants: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). Results: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient–carer dyad. Conclusions: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death. [ABSTRACT FROM AUTHOR]

In Nigeria, adolescents in urban slums are increasingly at risk of adverse sexual and reproductive health (SRH) outcomes. However, little is known about how individual factors predict parent-adolescent communication on SRH issues in a resource-poor urban setting in Ibadan. Thus, this study investigated individual factors associated with parent-adolescent communication on SRH issues in urban slums of Ibadan, southwest, Nigeria. This study is part of a larger project that explores the socio-ecological factors influencing parent-adolescent communication on SRH issues in selected slums in Ibadan, Nigeria. Within this broader framework, this paper relies on the quantitative data obtained in 10 selected slums. Interviewer-administered structured questionnaire [scripted on open data kits (ODK)] was utilized to collect data from a sample of 796 parent-adolescent dyads. Six SRH topics were investigated to describe the issues discussed. Analytical techniques utilized include; frequency counts, chi-square, and multinomial logistic regression. Parent-adolescent communication regarding SRH issues is not uncommon in urban slums of Ibadan but characterized by indirect communication, threat and warning. Parents and adolescents' age, gender, marital/relationship status, educational attainments and religion played influential role in parent-adolescent communication regarding SRH issues. These factors were identified to be significantly associated with the pattern of parent-adolescent discussion of SRH issues. Age-specific SRH education should be available to adolescents and parents need to be educated on appropriate SRH information and the best way to engage their adolescents on SRH issues. [ABSTRACT FROM AUTHOR]

As uses of plasma-derived medical products increase globally, so does the demand to collect plasma from donors. There is evidence that positive interactions with center staff motivate plasma donors to return. This paper reports on a focused ethnography investigating experiences of nurses and phlebotomists in one of Canadian Blood Services' first source plasma collection center during the COVID-19 pandemic. Participants found the transition from whole blood collection to source plasma amid a global pandemic challenging, but they adapted by coming together as a team, and then worked to put the donor experience first. Their experience resonates with scholarship on emotional labor. As blood services worldwide attempt to increase source plasma collection, there is a need to understand care work that nurses and phlebotomists perform on the front-line. This study offers insight into how blood services can support staff in plasma operations by recognizing emotional labor. [ABSTRACT FROM AUTHOR]

Summary: Results of our previous research indicated that older adults believe that there's a lack of sufficient social support from informal sources available to them in difficult situations they face. In follow-up research, we found that older adults defined limitation in their self-sufficiency in daily activities to be the most significant difficult situation for them. This paper disseminates the results of the research seeking to answer the research question: According to older adults, can family be a source of social support in a difficult situation of limitation of self-sufficiency in daily activities? Social support theory is the used theoretical basis. Using the method of qualitative content analysis we analysed 23 semi-structured interviews with older adults. Findings: We found that if two conditions, that is, geographic proximity to individual family members and the quality of relationships with family members, are ensured, family can function as one of the informal sources of social support according to older adults. In case that older adults prefer a formal source of social support, they consider their family as a source of social support only in an extreme situation of limited self-sufficiency. Applications: This study provides social workers with a better understanding of the difficult situations of older adults and what kind of social support older adults prefer. This study also provides an argumentation about the importance of gerontological social work. [ABSTRACT FROM AUTHOR]

This paper employs an assemblage lens to generate analyses of general public narratives on antimicrobial resistance (AMR). Global efforts to reduce AMR include communications aiming to promote general public awareness, provide knowledge, encourage careful antibiotics use, and discourage demands for them. These efforts are somewhat compromised by the assumptions they make of individual lack of knowledge and motivation and the manner in which the AMR problem is framed in isolation from the biological, social and economic structures that produce it. Conceptualising AMR as an effect of antimicrobial assemblages of which publics are but one part, we analysed interviews with the general public on the lived experience of infections, antibiotic treatments and AMR. Far from science and policy discourse on AMR, these narratives showed antibiotics to be partly solutions to the social and biomedical challenges of infection, framed by self-defensive immunity and hygiene, the affective benefits of 'immune boosting', and the imperative to sustain the moral standing of the healthy citizen. Failing public awareness and action on AMR can be attributed to public health messages that overlook the social, affective and moral dimensions of infection care and separate AMR from its socio-economic drivers. [ABSTRACT FROM AUTHOR]

The present study is part of a larger research that analyses children's autonomy in healthcare settings from the perspective of doctors, children and their parents. Based on responses of 52 medical doctors in Estonia, this paper explores doctor's perspectives on how children's autonomy is exercised in a child-parent-doctor triangle and how patient's duality affects this process. The article combines relational theories of agency from childhood studies with the concept of children's autonomy applied in children's rights studies. [ABSTRACT FROM AUTHOR]

A CDSS generates a high number of inappropriate alerts that interrupt the clinical workflow. As a result, clinicians silence, disable, or ignore alerts, thereby undermining patient safety. Therefore, the effectiveness and appropriateness of CDSS alerts need to be evaluated. A systematic review was carried out to identify the factors that affect CDSS alert appropriateness in supporting clinical workflow. Seven electronic databases (PubMed, Scopus, ACM, Science Direct, IEEE, Ovid Medline, and Ebscohost) were searched for English language articles published between 1997 and 2018. Seventy six papers met the inclusion criteria, of which 26, 24, 15, and 11 papers are retrospective cohort, qualitative, quantitative, and mixed-method studies, respectively. The review highlights various factors influencing the appropriateness and efficiencies of CDSS alerts. These factors are categorized into technology, human, organization, and process aspects using a combination of approaches, including socio-technical framework, five rights of CDSS, and Lean. Most CDSS alerts were not properly designed based on human factor methods and principles, explaining high alert overrides in clinical practices. The identified factors and recommendations from the review may offer valuable insights into how CDSS alerts can be designed appropriately to support clinical workflow. [ABSTRACT FROM AUTHOR]

Empowerment is a concept of growing importance in cancer care, but little is known about cancer patients’ experiences of empowerment during follow-up. To explore this area, a qualitative systematic literature review was conducted in PubMed, CINAHL, and PsycINFO. A total of 2,292 papers were identified and 38 articles selected and included in the review. The thematic synthesis of the papers resulted in seven analytical themes being identified: empowerment as an ongoing process, knowledge is power, having an active role, communication and interaction between patients and health care professionals, support from being in a group, religion and spirituality, and gender. Very few articles explicitly explored the empowerment of cancer patients during follow-up, and the review identified a lack of attention to patients’ own understandings of empowerment, a lack of specific focus on empowerment during follow-up, and insufficient attention to collective empowerment, as well as ethnic, social, and gender differences. [ABSTRACT FROM AUTHOR]

Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. Aim: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors. Design: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology. Data sources: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report. Results: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality. Conclusion: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings. [ABSTRACT FROM AUTHOR]

The article focuses on developing and using a mobile application in the research of spatial practices along the Polish-German border region. The goal is to broaden the frame of thinking about the use of mobile applications in social research and understand it as a network of human and non-human actors. Based on observations and interviews conducted both with the study participants using the application and ourselves as members of the research team, who developed the app, we will examine expectations and potentials regarding the use of this application. We explore how it shaped our relationships and contacts and the perception of the data collected, and we conclude by proposing a framework allowing to consider more factors in the development of the application to enhance efficiency and reliability and to see how it transforms the research process and its environment. [ABSTRACT FROM AUTHOR]

Summary: Social work practice has a history of collegial, intra-, and interprofessional discussions that take place backstage, that is, without the presence of clients. Because of their backstage character, these discussions may be considered even more important to examine than meetings at which clients are present and that are in a way already open to the public. The purpose of the present review was to provide insight into this practice by identifying and synthesizing recent empirical findings from existing studies using naturalistic data, published in English in peer-reviewed journals. Findings: We identified four types of interaction among practitioners in relation to the case discussed and three types of content that were raised and shared, as well as an apparent mismatch between formal reasons for the discussions and the purpose they serve in practice. A lack of common vocabulary for conceptualizing the discussions and of attention given to their backstage character was identified in the included studies. Applications: The review highlights an important area for further research and stresses the importance of not being blinded by formal purposes or ideological underpinnings in examining intra- and interprofessional discussions in social work; it shows that it is important to look into what is actually going on in practice. [ABSTRACT FROM AUTHOR]

Introduction: Dementia care is often fragmented and un-coordinated. As the number of individuals living with dementia increases worldwide, navigation programs are a way to help counter difficulties with navigating and accessing services by better integrating care for individuals with dementia and their family caregivers. While navigation programs are increasingly being used, it is not clear how to best implement such programs in North America and abroad. Methods: Following Arskey and O'Malley's (2006) scoping review methodology and theoretically informed by the Consolidated Framework for Implementation Research, this paper explored existing navigational programs used in dementia care to identify factors to consider when implementing these programs across different settings. Results: Twenty-two articles were included in this review. Our findings suggest that there is a high degree of variability with how navigation programs are being delivered and no clearly established or standardized protocol to implement such programs. Barriers and facilitators to implementation were identified as they relate to (1) Complexity (Intervention Characteristics) ; (2) Patient and Caregiver Needs (Outer Setting) ; (3) External Policies (Outer Setting) ; (4) Available Resources (Inner Setting) (5) Communication (Inner Setting) ; (6) Culture (Inner Setting) ; (7) Leadership Engagement (Inner Setting); (8) Knowledge and Beliefs (Characteristics of Individuals); (9) Champions (Process) and (10) Evaluation (Process). Discussion: Combined, the findings from this review provide suggestions for implementing navigation in the context of dementia care and suggest several pragmatic considerations (e.g. available resources) when implementing new navigation programs. [ABSTRACT FROM AUTHOR]

Mali has implemented the Filets Sociaux (Jigisémèjiri) program that aims to reduce poverty through cash transfers (CTs) to predominantly male heads of household with accompanying measures. This paper reports on a qualitative study of the effects of the program on intimate partner relationships. In-depth interviews were conducted with men and women in monogamous and polygamous households. Findings revealed that the positive aspects of intimate partner relationships were communication and shared values. However, discussions around decision-making revealed male authority with limited influence by women. Physical violence was reported to be caused by tensions and disputes. Whereas sexual violence was contested, some women described sexual force as violence but men and women asserted that compliance in sexual matters by women was expected. Men also asserted control through preventing women from working outside the home. The CTs were managed by the husband, with some involvement of wives in decision-making about the use of CTs. CTs were reported to reduce household poverty and improve wellbeing, especially for men. There were reports of the effects of the program on IPV, especially in the reduction of physical violence, its effects on sexual violence and controlling behaviour were reported to be limited. Since women are not the primary recipients of the CT, there is limited effect on women's agency to challenge male authority and control around sexual and financial matters. CTs may be more effective if targeted to women, alongside skill and knowledge strengthening to utilize cash transfers to assert their rights to equality and prevent violence [ABSTRACT FROM AUTHOR]

Summary: The social care assessment is a 'key interaction' between a person and the local authority with 'critical' importance for determining a person's needs for care and support. In order to achieve this, the guidance requires that assessments must be 'person-centred throughout'. The concept of person-centred practice is now routinely invoked, but there remains little empirical evidence on how it gets put into practice. Findings: This paper draws on interview data from 30 practitioners about their experiences of conducting social care assessments in England. While there was widespread support for the principles of a person-centred approach, tensions emerged for practitioners in three ways: the way in which 'chat' was used to build a relationship or conduct the assessment, whether to conduct the assessment via a conversation or by following the sections on the agency form and the extent to which the assessor should involve and negotiate the contributions of family members. Applications: We argue that each of these dilemmas represents an occasion when a commitment to person-centred practice is negotiated between professionals and service users and sometimes compromised as a result. We consider the possibilities for and constraints on achieving person-centred assessments in a post-Care Act environment and discuss the implications for social work practice and research. [ABSTRACT FROM AUTHOR]

Social care assessments in England are envisaged as conversations, implying an informal and congenial encounter, in which both parties have equal roles. However, a fundamental task during an assessment is to gauge eligibility for resources. This article uses conversation analysis to consider audio recorded data of seven social care assessments in England. The article focuses on topic shifts, where the assessor introduces an 'assessment relevant' topic, and we examine how these shifts are managed. Sometimes assessors used what was said by the client or by the carer as a 'pivot', which could produce a feeling of friendly conversation, but simultaneously lead to an intrusion into the client's personal knowledge domain. Assessors also had other strategies for framing a 'next question', such as noticing something in the environment, referring to previous notes or to previous conversations. The conversation might feel 'friendly', but these tactics could lead to the personal life domain of the client being inadvertently revealed and used as relevant for their assessment. [ABSTRACT FROM AUTHOR]

Background: Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals. Aim: To identify quality of life issues that are relevant to carers of cancer patients with cachexia. Design: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources: PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included. Results: Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional’s input, conflict with the patient and negative emotions. Conclusion: The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve. [ABSTRACT FROM AUTHOR]

This qualitative study explores how communication practice affects Swedish home care nurses' psychosocial work environment. Data consisted of interviews and field observations, analyzed from the perspective of Media Synchronicity Theory and the Job-Demand-Control-Support model. Individual home care nurses were found to manage an interorganizational communication web. The results indicated that this web could have a protective function for the nurses. Synchronous communication was found important to control the work situation. Nevertheless, asynchronous communication was enforced when communicating with other health care organizations. This reduced the level of control for the nurses. However, when possible, the nurses also arranged their communication practice to gain control. Thus, local optimization for one group could result in suboptimization for others. We conclude that communication practice should be designed holistically and promote synchronous communication to foster well-functioning interprofessional teamwork and to create a healthy psychosocial work environment for both home care nurses and their collaborators. [ABSTRACT FROM AUTHOR]

Introduction: The Diabetes Prevention Program (DPP) is effective; enrollment is low. Little research has examined factors driving individuals' enrollment decisions. Methods: In our final survey of a randomized trial comparing methods to increase enrollment in the DPP, we asked participants about factors impacting enrollment. We conducted interviews with a subgroup. Results: Participants who completed the survey (n = 299) were primarily female (96 male); middle-aged (mean 52.9, SD = 14.7); white (86%); non-Hispanic (85%). Only 19% reported awareness of the DPP prior to the study. Cost, online availability, and behavior-change motivation were the most highly rated factors influencing enrollment. The median amount participants were willing to pay for the program was $66.50. Phone interviews included 17 individuals who were/were not interested in receiving a referral to the DPP. Those interested described risk awareness, family history, social support, and healthcare-provider influence as facilitating enrollment. Cost, time, travel, unsupportive family, incomplete knowledge about the program's impact and low self-efficacy were barriers. Among those uninterested, some were already engaging in lifestyle change, and some didn't see a benefit. Conclusions: Results suggest that, even among high-risk individuals, efforts to increase awareness and benefits of the DPP are needed, as are efforts to address cost of enrollment and low motivation. Trial Registration: ClinicalTrials.gov protocol ID: 00132307. The Effect of 360 Video and MAPS on Enrollment in the DPP. URL: https://www.clinicaltrials.gov/study/NCT04746781?id=00132307&rank=1. [ABSTRACT FROM AUTHOR]

Background: Despite the universal nature of postpartum vaginal bleeding after childbirth and the importance of managing vaginal bleeding in the postpartum period to monitor health status, little is known about the information or products that birthing individuals are provided. Investigating current practices may offer insights to enacting more supportive and equitable postpartum care. Objective: To evaluate the patterns and content of vaginal bleeding counseling provided to birthing parents while on a postnatal inpatient unit. Design: Observational study of inpatient postpartum care. Birthing parents and their companions consented to video and audio recording of themselves, their infants, and healthcare team members during their postnatal unit stay. Methods: Following IRB approval and in coordination with clinicians at a tertiary hospital in the southeastern United States, data were collected with 15 families from August to December 2020. A multidisciplinary team coded video and audio data from each family from 12 h before hospital discharge. This analysis evaluates patterns of vaginal bleeding counseling timing, content, and language concordance and thematic content of this communication. Results: Birthing parent participants were self-identified Hispanic White (n = 6), non-Hispanic Black (n = 5), non-Hispanic White (n = 3), and non-Hispanic multi-race (n = 1). Six were Spanish-speaking and eight had cesarean section births. The timing, content, and language concordance of vaginal bleeding communication varied, with these topics mainly addressed in the hour preceding discharge. Twelve of the 15 birthing parents had communication on these topics between 2 and 5 times, 2 had one exchange, and 1 had no counseling on postpartum bleeding observed. Four of the six Spanish-speaking birthing parents had counseling on these topics that was not language concordant. Postpartum vaginal bleeding management involved the themes of access to products, patient safety, and meaningful counseling. There was a lack of adequate access, variation in accurate and respectful care, and a busy clinical environment with differences in information provided. Conclusion: Findings suggest that there are opportunities to strengthen clinical practices for more consistent, proactive, and language concordant vaginal bleeding and subsequent menstrual care postpartum. Menstrual equity is an important part of dignified and safe care. Plain language summary: Video analysis of when and what information on vaginal bleeding was shared between people who just gave birth and their healthcare team at the hospital. Why did we do the study? After birth, people must take care of vaginal bleeding. It is important for people in the hospital to recognize warning signs for too much bleeding, have access to pads, and feel supported by their healthcare team before discharging to home. There has been little research on experiences with inpatient counseling on postpartum vaginal bleeding—a part of the reproductive life cycle—for new parents. We wanted to watch and listen in hospital rooms so we could think about the best ways for healthcare providers to talk about vaginal bleeding. What did we do? We asked 15 people who just gave birth, people staying with them at the hospital, and their healthcare team if we could video and sound record in their hospital rooms. They could start and stop recording anytime. We only recorded people who agreed to be in the study. What did we learn? We watched recordings of the last 12 hours at the hospital before each family went home. We found that most of the time, the healthcare workers did not talk about vaginal bleeding. People who spoke Spanish did not always have someone interpreting into their language. Sometimes family members had to translate and ask for pads. Some people did not have enough pads or underwear and had to wait after asking for more. What does it mean? We found ways to improve teaching about vaginal bleeding after birth. We recommend always having an interpreter when needed, giving people enough pads and underwear in their rooms, including companions in the teaching, and having enough healthcare workers to answer requests. These ideas would improve the counseling and give everyone the support needed after giving birth. [ABSTRACT FROM AUTHOR]

In response to the data revolution, academic research and media attention have increasingly focused on the technological adaptation and innovation displayed by the far right. The greatest attention is paid to social media and how groups and organizations are utilizing technological advancement and growth in virtual networks to increase recruitment and advance radicalization on a global scale. As with most social and political endeavors, certain technologies are in vogue and thus draw the attention of users and regulators and service providers. This creates a technological blind spot within which extremist groups frequently operate older and less well regarded technologies without the oversight that one might expect. This article examines the less well-studied traditional and official websites of the Ku Klux Klan, the most established and iconic of American far-right organizations. By incorporating non-participant observation of online spaces and thematic analysis, this research analyzes the evolution of 26 websites, from their emergence in the early 1990s to the present day. We examine the ways in which traditional printed communications and other ephemera have progressed with advances in technology, focusing on the following central elements of Klan political activism and community formation: Klan identity, organizational history, aims and objectives; technology and outreach, including online merchandise and event organization; and the constructions of whiteness and racism. The results add value and insight to comparable work by offering a unique historical insight into the ways in which the Klan have developed and made use of Web 1.0, Web 2.0, and Web3 technologies. [ABSTRACT FROM AUTHOR]

Background: There has been rapid growth of chiropractors pursuing career opportunities in both public and private hospitals and other integrated care settings. Chiropractors that prosper in integrated care settings deliver patient-centered care, focus on the institutional mission, understand and adhere to organizational rules, and are proficient in navigating complex systems. The Council on Chiropractic Education Accreditation Standards do not outline specific meta-competencies for integrated care clinical training. Objective: The purpose of this study was to develop preliminary integrated health care competencies for DC programs to guide the advancement of clinical chiropractic education. Methods: A systematic literature search was performed. Articles were screened for eligibility and extracted in duplicate. Domains and seed statements were generated from this literature, piloted at a conference workshop, and evaluated via a modified Delphi consensus process. Of 42 invited, 36 chiropractors participated as panelists. Public comment period yielded 20 comments, none resulting in substantive changes to the competencies. Results: Of 1718 citations, 23 articles met eligibility criteria. After 2 modified Delphi rounds, consensus was reached on all competency statements. A total of 78 competency statements were agreed upon, which encompassed 4 domains and 11 subdomains. The 4 domains were: 1) Collaboration, (2) Clinical Excellence, (3) Communication, and (4) Systems Administration. Conclusion: We identified 78 preliminary competencies appropriate for preparing DC students and early career chiropractors for clinical practice in integrated healthcare settings. Educational programs may consider these competencies for curricular design and reform to strengthen DC program graduates for integrated practice, advanced training, and employment. [ABSTRACT FROM AUTHOR]

Family involvement is widely considered an important part of patient care in the intensive care unit. From professional health care organizations, government, and hospital associations, there has been a cultural shift toward family presence as part of a wider commitment to patient-centered care. At the same time, the meaning and impact of family involvement in the intensive care unit setting remain opaque and under-studied. This study employed an ethnographic approach to better understand family involvement in practice and from the perspective of health care professionals and family members by studying an implementation trial of a family involvement tool in two intensive care units over 2 years. The findings revealed that an expanded and self-defined role for family members as carers in the intensive care unit challenged the current configuration of the nurse patient/family relationship and that family members were aware of these dynamics. While the intensive care unit implementation teams were both motivated to implement a novel way of facilitating family involvement, the processual, organizational, and contextual factors in the intensive care units largely determined the possibilities of its application. This suggests that interventions should address the specific context in which they are employed. [ABSTRACT FROM AUTHOR]

Strengthening online learning outcomes requires the establishment of strong student-teacher relationships to engage students actively in learning activities. Teacher-student relationships are also pivotal factors for enhancing academic motivation for online learning engagement. Generally, however, research on online teaching remains underdeveloped. We aimed, in this study, to investigate the complex interplay in higher education in Pakistan between teacher-student relationships, academic motivation, and online learning engagement. We used Self-Determination Theory to frame an exploration of the impact of positive teacher-student relationships as mediated by intrinsic or extrinsic academic motivation on students' engagement in online learning activities. We administered a student self-report questionnaire to 437 participants from diverse universities in Sindh province. Using Structural Equation Modeling, we confirmed a model fit in which there were positive correlations between teacher-student relationships and students' online learning engagement; and between students' intrinsic and extrinsic academic motivations and their on line learning engagement. Our findings emphasized the need for communication, personalized support, and a sense of belonging in virtual education. Moreover, our findings revealed the mediating role of students' intrinsic and extrinsic academic motivation in teacher-student relationships, highlighting the nuanced dynamics of academic motivation in the virtual learning environment, with intrinsic motivation having the greatest mediating impact in the relationship between teacher-student relationships and on line learning engagement. Our study's practical implications include a need for professional educators to foster positive teacher-student relationships and integrate student motivational elements into online course design. [ABSTRACT FROM AUTHOR]

This study identified custodial grandparents' perception of sources of stress that may affect their health and better understand their needs. Findings from this qualitative study are based on thematic analysis of interviews with 10 custodial grandparents. The following themes emerged: 1) grandparents' stress from perceived lack of readiness to care for grandchildren; 2) need for effective communication between and among family members; 3) sufficiency of financial and legal resources; 4) access to community resources, and 5) raising grandchildren reenergizes and revitalizes grandparents' physical and mental health. These findings provide insight into the stressful aspects of the role of raising grandchildren. Understanding stressors affecting custodial grandparents and their grandchildren will help school nurses, social workers, teachers, school administrators and other professionals collaborate to address their challenges. [ABSTRACT FROM AUTHOR]

Intergenerational programs in residential aged care may improve well-being and combat loneliness and social isolation in older people with cognitive impairment. This pilot study investigated the effects of a semi-structured intergenerational group, including children from a co-located early learning centre and people living in residential aged care with cognitive impairment. This 9-week study used a mixed methods pre- and post-program design. Sessions were designed and delivered once per week by Occupational Therapists and took into account residents' interests and children's developmental needs and interests, identified in pre-program interviews. Nine older people with cognitive impairment and 13 children participated. The program was well attended despite disruptions and complications caused by COVID-19 and weather conditions. Older people valued the opportunity to engage with the children. Children were observed to gain confidence in communicating and forming friendships with older people with different levels of ability. There did not appear to be any change in loneliness or neuropsychiatric symptoms. The intergenerational program benefited participants and received strong support from family members and staff of the early learning centre and aged care home. [ABSTRACT FROM AUTHOR]

A growing body of research in psycholinguistics, corpus linguistics, and sociolinguistics shows that we have a strong tendency to repeat linguistic material that we have recently produced, seen, or heard. The present paper investigates whether priming effects manifest in continuous phonetic variation the way it has been reported in phonological, morphological, and syntactic variation. We analyzed nearly 60,000 tokens of vowels involved in the New Zealand English short front vowel shift (SFVS), a change in progress in which trap / dress move in the opposite direction to kit, from a topic-controlled corpus of monologues (166 speakers), to test for effects that are characteristic of priming phenomena: repetition, decay, and lexical boost. Our analysis found evidence for all three effects. Tokens that were relatively high and front tended to be followed by tokens that were also high and front; the repetition effect weakened with greater time between the prime and target; and the repetition effect was stronger if the prime and target belonged to (different tokens of) the same word. Contrary to our expectations, however, the cross-vowel effects suggest that the repetition effect responded not to the direction of vowel changes within the SFVS, but rather the peripherality of the tokens. We also found an interaction between priming behavior and gender, with stronger repetition effects among men than women. While these findings both indicate that priming manifests in continuous phonetic variation and provide further evidence that priming is among the factors providing structure to intraspeaker variation, they also challenge unitary accounts of priming phenomena. [ABSTRACT FROM AUTHOR]

Background: Clinical documentation is a fundamental component of patient care. The transition from paper based to electronic medical records/electronic health records has highlighted a number of issues associated with documentation practices including duplication. Developing new ways to document the care provided to patients and in turn, persuading clinicians to accept a change, must be supported by evidence that a change is required. In Australia, there has been a limited number of studies exploring the clinical documentation practices and beliefs of clinicians. Objective: To gain an in-depth understanding of clinician documentation practices. Method: A qualitative design using semi-structured interviews with clinicians (allied health professionals, doctors (physicians) and nurses) working in a tertiary-level hospital in South-East Queensland, Australia. Results: Several themes emerged from the data: environmental factors, including departmental policy and systemic issues, and personal factors, including verification, clinical reasoning and experience influencing documentation practices. Conclusion: Our study identified that the documentation practices of clinicians are complex, being driven by both environmental and systemic factors and personal factors. This in turn leads to duplication and some redundancy. The documentation burden of duplication could be reduced by changes in policy, supported by multidisciplinary documentation procedures and electronic systems aligned with clinician workflows, while retaining some flexible documentation practices. The documentation practices of individuals, when considered from the perspective of enhancing quality care, are considered legitimate and therefore will continue to form part of the health (medical) record regardless of the format. [ABSTRACT FROM AUTHOR]

Introduction: Dignity is one of the most important values sensitively perceived by patients in nursing care. Older patients have been identified as having a high risk of losing their dignity in institutional care. To promote optimum nursing care, a deeper insight into the problem of older patients' dignity is needed. Aim: The aim was to identify, analyse and synthesise the qualitative evidence of dignity views and factors affecting it from the nurses' and older patients' perspective in the context of nursing care and to compare synthesised finding from the both perspective. Methods: A literature review of qualitative evidence was chosen as a study design. The ENTREQ statement was implemented to enhance transparency. The CASP – Qualitative checklist and the thematic synthesis for synthesised findings were used. The electronic databases Academic Search Complete, CINAHL, Health Source: Nursing/Academic Edition, MEDLINE and PROQUEST were used to gather information for qualitative studies. Results: A total of 306 papers were retrieved. Fourteen qualitative studies met the inclusion criteria and were included in the review after methodological quality assessment using CASP. Four main themes of dignity from nurses' perspective were synthesised: seeing the patient as a unique person, communication and privacy, involving the patient, and working culture and environment. From the patients' perspective, six main themes were synthesised: autonomy and control, privacy, relationships, care and comfort, communication and identity. The comparison shows that the key difference is that older patients highlighted the theme relationships and nurses underlined the theme working culture and environment. Conclusion: The model structures of the older patients' dignity from both the nurses' and patients' perspectives support the idea of a multidimensional structure of human dignity. The resulting model might be used in a nursing self-reflection, in the management of the institutions providing all-day care for the older people and in the education and practice. [ABSTRACT FROM AUTHOR]

Objectives: The social ties people have with one another are known to influence behaviour, and how information is accessed and interpreted. It is unclear, however, how the social networks that exist in multi-professional health care workplaces might be used to improve quality in hospitals. This paper develops explanatory theory using realist synthesis to illuminate the details and significance of the social ties between health care workers. Specifically we ask: How, why, for whom, to what extent and in what context, do the social ties of staff within a hospital influence quality of service delivery, including quality improvement? Methods: From a total of 75 included documents identified through an extensive systematic literature search, data were extracted and analysed to identify emergent explanatory statements. Results: The synthesis found that within the hospital workforce, an individual's place in the social whole can be understood across four identified domains: (1) social group, (2) hierarchy, (3) bridging distance and (4) discourse. Thirty-five context-mechanism-outcome configurations were developed across these domains. Conclusions: The relative position of individual health care workers within the overall social network in hospitals is associated with influence and agency. As such, power to bring about change is inequitably and socially situated, and subject to specific contexts. The findings of this realist synthesis offer a lens through which to understand social ties in hospitals. The findings can help identify possible strategies for intervention to improve communication and distribution of power, for individual, team and wider multi-professional behavioural change in hospitals. [ABSTRACT FROM AUTHOR]

There is a lack of nutritional programming and resources available for people living with HIV/AIDS (PLWHA) in Nova Scotia, Canada. This is problematic for several reasons, including that adequate food and nutrition knowledge is integrated to effective medical therapy and wellness for PLWHA. The aim of this research was to explore and describe the beliefs, values, and experiences of HIV-service providers involved programming for PLWHA in Nova Scotia. Using a post-structuralist lens, semi-structured interviews were conducted with nine service providers. Thematic analysis of interview transcripts identified four main themes: (1) recognizing the social determinants of health, (2) acknowledging and disrupting layered stigma, (3) understanding the commensality, and (4) navigating and utilizing networks of care. These findings suggest that those developing, delivering, and evaluating food and nutrition-related programming must engage in community-inclusive approaches that recognize the varied social determinants of health that shape the lived of PLWHA, leverage existing networks and resources, and actively disrupt layered stigma. Also, in agreement with existing evidence, participants stressed the value of communicating and supporting the practice of eating together (commensality) and cultivating networks of care. [ABSTRACT FROM AUTHOR]

Objectives: Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer. Methods: Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of – and barriers to – using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education). Results: Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes. Conclusions: Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances. [ABSTRACT FROM AUTHOR]

Background: The use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering predetermined questions in a template. Aim and methods: Using a constructionist approach, this study will (1) chart what versions of a person's life story the templates produce, and (2) establish the intended purpose of such life stories, as communicated by the templates. This study departs from the assumption that life story templates communicate something about the conceptions of people living with dementia. The thematic analysis used data comprising 30 blank templates, totalling about 1,700 questions. Findings: The life story templates were found to generate two very different versions of the individual: (1) a person before symptoms of dementia or (2) a patient with dementia. We also found contradictions about what information should be included, whose life story it was, and the intended use. Discussion: Despite strong pressure on dementia care providers to collect life stories from residents, the life story templates they use are without clear direction, ideology, or purpose. The lack of direction is key given that life stories can be considered actants that shape assumptions about people with dementia and construct realities in dementia care settings. We highlight the need to develop ethical guidelines for life story template design, matched with guidelines for their intended use. [ABSTRACT FROM AUTHOR]

Introduction: Parent/carers of disabled children want timely and personalized support. Research suggests that technology may address some limitations associated with traditional methods of communication with therapists (e.g. letter, telephone). This exploratory study examined United Kingdom (UK) parents and carers views on the use of digital technology (i.e. computers/phones) in supporting their child and the potential for its greater use in the care of children with complex needs. Methods: An online survey was distributed via special schools and support forums/networks. Questions explored use of and attitudes to digital technology in the care of children with complex needs. Descriptive statistical analyses and content analyses were undertaken on the data. Results: Respondents were 43 parents/carers whose children used rehabilitation services prior to the COVID-19 pandemic. The majority used digital technology frequently to support their child and saw the potential for greater use in rehabilitation services – provided this was not at the expense of in-person therapist contact. Conclusion: Parents and carers held positive views of digital technology as a tool to support their child and enhance rehabilitation services. Recommendations include regular service consultation on parental/child attitudes to digital service delivery and longitudinal studies to assess related health outcomes. [ABSTRACT FROM AUTHOR]

Background: Text messages are useful for health promotion and can be modified during public health emergencies. Purpose: Describe how we developed and implemented a physical activity (PA) text messaging component within a faith-based intervention, modified the text message content in response to the COVID-19 pandemic and evaluated participants' perceptions of the modified text messages. Research Design and Study Sample: PA promotion text messages were delivered to predominately Spanish-speaking, churchgoing Latino adults (n = 284) in Los Angeles, California. In 2020, we modified the messages to disseminate COVID-19-related information and support and share virtual PA resources. Data Collection and Analysis: We analyzed quantitative and qualitative survey data to gauge participants' experiences with the text messages. Results: COVID-19 related text messages were a feasible, acceptable addition to a PA intervention for a sample of Latinos. Conclusions: Throughout the pandemic, the messages enabled continued communication and support for PA and protection from COVID-19 in a population at high-risk of health inequities. [ABSTRACT FROM AUTHOR]

Language in autism is heterogeneous, with a significant proportion of individuals having structural language difficulties and inclusion of language impairment as a specifier under Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism. This systematic review asked: What are the reporting patterns of variables pertaining to structural language in autism prior to and after publication of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.)? What norm-referenced assessments does research use to characterize the language abilities of autistic individuals with respect to language impairment? This preregistered review (PROSPERO: CRD42021260394) followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches took place in September 2022 and included Linguistics and Language Behavior Abstracts, PsycINFO, PubMed, and the Directory of Open Access Journals. Search terms included three essential concepts: autism, language, and age. Two coders independently screened and evaluated articles. Searches yielded 57 qualifying studies, with mostly consistent reporting practices prior to and after the Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Studies varied in how they defined language groups and in what norm-referenced measures they used. Interpreting research on structural language in autism requires attention to diagnostic and grouping criteria. Although inconsistency in reporting in original studies limited this review, better understanding the available information on structural language in autistic individuals aged 3–21 years may support identification of language needs. Under the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), language impairment can co-occur with autism. It is not yet clear how research defines, reports, and characterizes structural language abilities of autistic individuals eligible for school-based special education services (aged 3–21 years) in the United States. In the United States, students typically must be formally diagnosed to be eligible for services and supports. However, the quality of diagnosis is only as good as the research evidence on which diagnosis depends. To evaluate evidence quality, we examined how studies of school-aged autistic individuals report assessments of language ability. This systematic review included 57 studies using English language age-referenced assessments used to measure structural language. Findings showed many differences across studies in how language abilities were measured and reported. Also, none of the studies fully reported the variables relevant to characterizing language impairment. Outcomes were similar across versions of the Diagnostic and Statistical Manual of Mental Disorders. Findings indicate that researchers and clinicians should pay attention to reporting diagnostic and grouping criteria. Carefully interpreting research evidence is critical for ensuring that diagnostic criteria and supports are representative of and accessible to autistic individuals and relevant parties. [ABSTRACT FROM AUTHOR]

Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10 K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. [ABSTRACT FROM AUTHOR]