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Purpose: Despite a known risk of cellulitis recurrence, the management of the wider impact and risk factors has been neglected. The innovative National Cellulitis Improvement Programme (NCIP) addresses this by providing evidence-based and individualised care to improve patient reported outcomes and reduce the risk of recurrence. The aim of this paper is to examine the longer-term impact of cellulitis and to identify a suitable and clinically relevant Patient Reported Outcome Measure (PROM). Methods: A review of existing cellulitis-specific PROMs was undertaken, alongside literature detailing the patient-focused impact of cellulitis, to identify a suitable PROM for clinical use. A group of expert therapists and patient representatives (n = 14) shared their individual and collective experiences over a series of events to discuss and debate the impact of cellulitis and review available PROMs. CELLUPROM© is introduced with anonymised PROM data and case study information reported to establish the impact of CELLUPROM© within usual NCIP care. Results: No cellulitis-specific PROMs were identified. Literature focused on the signs and symptoms of an acute episode of cellulitis, with outcome measures primarily used to evidence the impact of an intervention. An enduring physical, social and emotional impact of cellulitis was identified in this study, providing the basis for the new cellulitis-specific PROM (CELLUPROM©), which has been implemented with good effect in clinical care. Conclusion: This study has highlighted the lasting impact of cellulitis. Using CELLUPROM© within the risk-reduction NCIP has helped develop Value-Based Healthcare and support programme evaluation. [ABSTRACT FROM AUTHOR]

Purpose: Most patient-reported outcome (PROs) used in thrombosis research and clinical practice are delivered using technology like online questionnaires. However, only few have undergone formal electronic adaptation from paper to digital versions, threatening the validity and reliability of the PROs. The present study aimed to perform an electronic adaption and cross-cultural translation of two PROs measuring health-related quality of life in a Danish cohort of patients with venous thrombosis (VTE), specifically the VEINES-QoL/Sym questionnaire and the PEmb-QoL questionnaire. Methods: The electronic adaption and cross-cultural translation processes followed the international guidelines recommended by ISPOR. The migration of the questionnaires from paper to electronic versions was conducted in the Research Electronic Data Capture (REDCap). Following approval of the electronically adapted and translated versions, a pretest of the questionnaires was performed by cognitive interviewing patients with VTE recruited from a hospital setting. Results: Nine men and ten women between the age of 19 and 73 years participated in cognitive interviews. The questionnaires were successfully adapted from paper to electronic versions, and during the migration process only a few modifications to the content and format were made. Most comments were related to technicalities, e.g. touch functions and checkboxes. The cross-cultural translation of both questionnaires was satisfactory, as only minor rephrasing was required. Conclusions: The original and Danish version of VEINES-QoL/Sym and PEmb-QoL were successfully adapted into electronic versions and are ready to share for REDCap users. Furthermore, the Danish versions of the two questionnaires have shown satisfactory face validity. [ABSTRACT FROM AUTHOR]

The integration of normative analysis with empirical data often remains unclear despite the availability of many empirical bioethics methodologies. This paper sought bioethics scholars' experiences and reflections of doing empirical bioethics research to feed these practical insights into the debate on methods. We interviewed twenty-six participants who revealed their process of integrating the normative and the empirical. From the analysis of the data, we first used the themes to identify the methodological content. That is, we show participants' use of familiar methods explained as "back-and-forth" methods (reflective equilibrium), followed by dialogical methods where collaboration was seen as a better way of doing integration. Thereafter, we highlight methods that were deemed as inherent integration approaches, where the normative and the empirical were intertwined from the start of the research project. Second, we used the themes to express not only how we interpreted what was said but also how things were said. In this, we describe an air of uncertainty and overall vagueness that surrounded the above methods. We conclude that the indeterminacy of integration methods is a double-edged sword. It allows for flexibility but also risks obscuring a lack of understanding of the theoretical-methodological underpinnings of empirical bioethics research methods. [ABSTRACT FROM AUTHOR]

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

Purpose: The purpose of this paper is to add to the research literature and begin to fill the gap in knowledge about shared parenting arrangements for women with young children and who have experienced domestic violence (DV), in three Canadian provinces; Alberta, Manitoba and Ontario. Method: This paper reports on the qualitative findings from a mixed methods study on shared parenting from women with children ages 4 and under. Twenty women participated in one-on-one individual interviews through electronic platform utilizing Zoom. Thematic analysis is used to analyze the data. Results: Despite efforts to not exclusively recruit women who had experienced domestic violence (DV) from their former partner, all participants identified as survivors of DV and ongoing survivors of DV, specifically, coercive controlling behaviours. Five themes describe the women's experiences of shared parenting with young children: 1) walking a tight-rope; 2) navigating post-separation relationships; 3) emotional realities of shared parenting; 4) shared parenting outcomes; and, 5) structural challenges. Conclusions: This paper not only adds to the significant and longstanding gap in knowledge directly from women with children ages 4 and under in shared parenting relationships, and who have experienced DV, and also helps to inform social service and legal actors. It is timely with the amendments to the Divorce Act in Canada which now includes DV as a factor in determining the best interests of the child. [ABSTRACT FROM AUTHOR]

Background: In the US, over 50% of suicide deaths are by firearm injury. Studies have found that limiting access to firearms, including storing them temporarily outside of the home or locking and unloading them securely at home, helps prevent suicide. Family members and other loved ones are in a unique position to encourage secure firearm storage. This paper describes the development of a workshop to empower loved ones of individuals at risk for suicide to discuss secure firearm storage in New York State. Methods: Using a multistakeholder engagement framework, we partnered with New York State county-level suicide prevention coalitions, local firearms experts, and other stakeholders to develop a 90-min workshop addressing secure firearm storage for suicide prevention. Pilot workshops were co-facilitated by a suicide prevention coalition member and a local firearms expert. Feedback gathered via surveys from workshop attendees and interviews with workshop co-facilitators were used to revise workshop content and inform dissemination. Following pilot workshops, a 1-day training event was held for potential future facilitators, and survey data were collected to assess trainee experiences and interest in facilitating future workshops. Data analysis included rapid qualitative analysis of interviews and statistical analysis of survey responses about acceptability of workshop. Results: Four pilot workshops included a total of 23 attendees. Pilot workshop attendees endorsed willingness and confidence to discuss secure firearm storage with a family member or loved one. The training event included 42 attendees, of which 26 indicated interest in facilitating a workshop within the next year. Co-facilitators agreed on several key themes, including the importance of having a "trusted messenger" deliver the firearms portion of the workshop, keeping the conversation focused on firearm safety for suicide prevention, and developing interventions that reflect firearm owning community's culture. Conclusions: Consistent with a public health approach to suicide prevention, this study leveraged a multistakeholder engagement framework to develop a community-based workshop empowering loved ones of individuals at risk for suicide to discuss secure firearm storage. The workshop will be disseminated across New York State. We noted positive and collaborative relationships across stakeholder groups, and willingness to facilitate the workshop among both suicide prevention and firearm stakeholders. [ABSTRACT FROM AUTHOR]

Objectives: Bowel urgency is an impactful core symptom of ulcerative colitis (UC). Patient-reported outcome (PRO) questionnaires have been developed and used to assess the patient experience of this important symptom. The objective of this paper is to present evidence from qualitative research conducted to support the use and interpretation of select PRO questionnaires to assess bowel urgency related to the UC patient experience. Methods: Qualitative interviews were conducted with ten adults with a clinician-confirmed diagnosis of moderately to severely active UC. Interviews aimed to document patient interpretation of modified recall periods for the Urgency Numeric Rating Scale (Urgency NRS), two global assessments (i.e., the Patient Global Impression of Severity [PGIS] and Patient Global Impression of Change [PGIC]), and four items (Items 11, 16, 23, and 26) of the Inflammatory Bowel Disease Questionnaire (IBDQ), and explore the patient perspective of meaningful change on these questionnaires. Results: Both modified Urgency NRS versions (with 7-day or 3-day recall period) were interpreted as intended by most patients (≥ 88.9%), and slightly more than half of patients (60.0%) reported that the 7-day recall period was more relevant to their bowel urgency experience. Patients reported thinking of bowel urgency (≥ 80.0%) or bowel urgency-related accidents (70.0% of patients) when interpreting the global assessments and IBDQ items. Most patients reported a 1- to 3-point change as the smallest meaningful improvement that would be meaningful on the Urgency NRS (similar to findings on other questionnaires). Conclusion: Adults with UC can understand and respond to the Urgency NRS with modified recall periods (i.e., 7-day or 3-day), interpret the conceptual content of the PGIS, PGIC, and select IBDQ items to be inclusive of bowel urgency and bowel urgency-related accidents, and select answers representing meaningful improvements on the Urgency NRS, PGIS, PGIC, and IBDQ item response scales. These results further contribute patient-centered data to existing UC and bowel urgency research. [ABSTRACT FROM AUTHOR]

Despite the emerging body of literature on the benefits of youth peer support, there is also evidence that peer support can have unintended negative impacts on peers themselves. It is important to explore what aspects of the peer role contribute to these difficulties in order to mitigate risks. This paper uses a participatory approach to examine the unique attributes of youth peer practice and the related challenges. We conducted semi-structured interviews and focus groups with both peer and non-peer staff from a community-based youth mental health program that provides peer support services (N = 29). Thematic analyses were completed using QSR NVivo. Analyses capture the defining features and related challenges of the peer support role (self-disclosure, boundaries, role confusion and dynamic recovery), and risk factors that affect peers (stigma, exposure to harm and burnout). This paper contributes to the literature on peer support as well as youth participatory evaluation. The findings will be useful to support the development of improved organizational contexts for peer practice and more effective peer support programming. [ABSTRACT FROM AUTHOR]

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Purpose: In England and Wales, Domestic Homicide Reviews (DHRs) are conducted into domestic abuse-related killings. In 2016, deaths by suicide were brought into the scope of this review system and, to distinguish them from reviews into domestic homicides, we describe these as 'Suicide Domestic Abuse-Related Death Reviews' (S-DARDR). To date, S-DARDRs have been little considered and, in response, this empirical paper seeks to unpack this process. Method: In a larger study, 40 DHR participants were interviewed, and a reflexive thematic analysis was undertaken. 18 participants discussed S-DARDRs. These interviews were re-read, with relevant extracts identified and re-analysed thematically. Through a shared critical reflection, we drew on our practice experience to interrogate the themes generated from the interviews and offer insight into the underlying challenges. Results: From the interviews, we generated four themes relating to commissioning and delivery; the involvement of stakeholders; intersections with other statutory processes; and purpose. Based on our shared critical reflection, we identified the underlying challenges as an under conceptualisation of S-DARDRs, alongside their de-mooring from the criminal justice system. Taken together, these challenges have implications for the conduct of S-DARDRs. We identify recommendations for policy and practice to address these challenges. Conclusion: The development of S-DARDRs has been little considered and challenges arise around when and how they should be undertaken. A shared understanding of key concepts and expectations around delivery is necessary if S-DARDRs are to enable robust learning and be a driver for systems change while also being accessible and understood by all stakeholders. [ABSTRACT FROM AUTHOR]

This paper presents the results of a survey conducted among people walking the pilgrimage route to the shrine of St James in Santiago de Compostela. The aim of the research was to investigate how a pilgrimage on the Camino de Santiago among a married couple or family affects marital or familial relationships, whether walking the trail to Compostela together influences the behaviour of family members towards each other and whether it forms positive attitudes and behaviour. The empirical basis of the study is the results of a survey among respondents who made the Camino de Santiago pilgrimage, as well as in-depth interviews conducted with 24 spouses of pilgrims along the Way of St James. The study revealed that doing the pilgrimage as a married couple or family had a positive impact on intra-family relationships. According to the interviewees, going on the pilgrimage together helped to strengthen marital bonds and trust, improve communication and mutual connection, show care and affection and improve contact with children. [ABSTRACT FROM AUTHOR]

Aim: Designing financial incentives for health behaviour change requires choices across several domains, including value (the size of the incentive), frequency of incentives, and direction (gain or loss). However, the rationale underlying complex incentive design is infrequently reported. Transparent reporting is important if we want to understand and improve the incentive development process. This paper describes a mixed methods approach for designing financial incentives for health behaviour change which involves stakeholders throughout the design process. Subject and methods: The mixed methods approach focuses on incentives for weight loss for men with obesity living in areas with high levels of disadvantage. The approach involves: (a) using an existing framework to identify all domains of a financial incentive scheme for which choices need to be made, deciding what criteria are relevant (such as effectiveness, acceptability and uptake) and making choices on each domain on the basis of the criteria; (b) conducting a survey of target population preferences to inform choices for domains and to design the incentive scheme; and (c) making final decisions at a stakeholder consensus workshop. Results: The approach was implemented and an incentive scheme for weight loss for men living with obesity was developed. Qualitative interview data from men receiving the incentives in a feasibility trial endorses our approach. Conclusion: This paper demonstrates that a mixed methods approach with stakeholder involvement can be used to design financial incentives for health behaviour change such as weight loss. Trial registration number: NCT03040518. Date: 2 February 2017. [ABSTRACT FROM AUTHOR]

This paper draws on a qualitative case study of the motherhood experiences of visually impaired Chinese women. The aim is to explain how disability and gender intersected in terms of motherhood experiences. By applying an intersectionality analytical framework, the present study argues that as people with disabilities, visually impaired women encounter more barriers and receive excessive support that threatens their expression of agency throughout motherhood decisions and childcare; as women with disabilities, visually impaired women receive less support from their family of origins compared to men with disabilities. By reinterpreting disability, employing various strategies to resist societal stigmas, and emphasizing their roles in the public sphere, women with visual impairments challenge the boundaries between disability and ability and reframe their relations with the world as mothers. [ABSTRACT FROM AUTHOR]

People from refugee and asylum seeker backgrounds resettling in Australia often experience intersecting risks for poor mental and physical health. Physical activity can promote better health outcomes, however there are limited programs tailored for this population. Therefore, understanding how to support refugees and asylum seekers to engage in physical activity is crucial. This paper aims to describe how the experience-based co-design (EBCD) process was used to identify priorities for a new physical activity service for refugees and asylum seekers. Using an EBCD framework we conducted qualitative interviews and co-design workshops with service users (refugees and asylum seekers living in the community) and service providers at a community Centre in Sydney, Australia. Sixteen participants, including eight service users and eight service providers engaged in the EBCD process over 12-months. The interviews revealed common themes or 'touchpoints' including barriers and enablers to physical activity participation such as access, safety and competing stressors. Subsequent co-design focus groups resulted in the establishment of five fundamental priorities and actionable strategies; ensuring cultural and psychological safety, promoting accessibility, facilitating support to access basic needs, enhancing physical activity literacy and fostering social connection. Using EBCD methodology, this study used the insights and lived experiences of both service users and providers to co-design a physical activity service for refugees and asylum seekers which is safe, supportive, social and accessible. The results of the implementation and evaluation of the program are ongoing. [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]

Caregiver-adolescent sexual health communication can reduce sexual risk attitudes and behaviors, but less is known about caregiver-adolescent sexual health communication in Uganda. Using a risk-focused approach, this paper seeks to characterize caregiver-adolescent sexual health communication and associated individual and family-based attributes, and associations with adolescents' sexual risk attitudes. We used latent class analyses to derive typologies (classes) of sexual health communication and assess their relationships with respondents' socio-demographic characteristics and sexual risk-taking attitudes. We derived three latent classes of sexual risk communication characterized as avoidant (class 1; 48%), functional (class 2; 22.2%) and comprehensive (class 3; 29.8%), each representing varying levels of frequency and type of content covered in the caregiver-adolescent sexual health communication. Primary caregiver's sex and respondents' comfort talking to their caregiver were significantly associated with membership in the functional class (RRR = 1.52; 95% CI: 1.05–2.19; p < 0.05) and comprehensive class (RRR = 1.68; 95% CI: 1.13–2.49; p < 0.05). Caregivers and their adolescents are attempting to engage in conversations related to sexual health, but many caregivers tend to shy away from potentially embarrassing topics such as sex. The wide variations in type and content of covered in caregiver-adolescent sexual health communications may compromise adolescents' sexual health knowledge, putting them at risk for poor sexual health outcomes. Given the cultural taboos around caregiver-adolescent communications on sex related topics, family interventions to address to strengthen caregiver-adolescent communication on sexual health are required. Highlights: Study findings revealed three latent caregiver-adolescent sexual health classes, dominated by avoidant communication. Caregiver gender and adolescents' comfort enhanced caregiver-adolescent sexual health communication. Interventions must tackle cultural norms and taboos for better caregiver-adolescent sexual health communication. [ABSTRACT FROM AUTHOR]

Measurement based care (MBC), a practice that uses patient reported outcome measures (PROMs), is not widely used in behavioral health settings and little is known about the patient experience with MBC in safety-net settings. This study aimed to understand patient experiences completing PROMs on paper when presenting to an outpatient, behavioral health setting within a public safety-net hospital. Semi-structured interviews were conducted with 22 participants in English and Spanish. Participants were 42 years old (SD = 12.7), mostly white (36.4%) and Black (31.8%). Thematic analysis was used to analyze findings. Overall, participants were engaged with PROMs and described them as helpful for themselves and their clinicians. Participants also expressed themes focused on PROMs user-friendliness, including formatting, time to complete measures, and participant characteristics such as attention and literacy. These findings are important to consider to ensure equitable access to MBC when implemented in behavioral health in the health safety-net setting. [ABSTRACT FROM AUTHOR]

Access to social protection in old age is crucial and yet contingent upon negotiations between the social structures of the welfare states and the personal networks within which individuals are embedded. International migration, changing family dynamics, and the transformation of care and other welfare policies in the global North make it challenging for older migrants to negotiate social protection. Drawing on 45 semi-structured interviews with first-generation older Turkish migrants in London and 13 semi-structured interviews with professional service providers for the community, the paper aims to investigate the assemblages of formal and informal social protection in the lives of older migrants. Findings indicate the complexity in accessing informal social protection and the navigation of formal care support in the UK for first generation older Turkish migrants and the contingency of access to formal care services on informal support networks for participants. It has been demonstrated that built infrastructure and policies aimed at older adults have great influence on assemblages of care, highlighting the need for more age-friendly and integrated policies to facilitate access to social protection for diverse groups of older adults. [ABSTRACT FROM AUTHOR]

Previous research has indicated that healthcare support for sexuality after spinal cord injury appears to be neglected or inadequately provided. The perspectives of people living with spinal cord injuries regarding what is lacking and what support they would like to be provided, and why, has yet to be explored. This paper uses critical theory to explore how societal constructs of sexuality and disability shape how sexuality is supported after a spinal cord injury. To do this, we conducted in-depth semi-structured interviews with 11 people with a spinal cord injury from Australia, the United Kingdom, and the United States. We drew from the works of various critical disability theorists to analyze what discourses underpinned the experiences people with spinal cord injuries had when receiving sexuality support. Analysis suggested that the following discourses were apparent: (1) broken bodies require repair, (2) sex is penetration, ejaculation then reproduction, and (3) sexual autonomy is required. Findings indicated healthcare professionals need to recognize people with spinal cord injuries as sexual beings with a diverse range of desires, lives, relations, and bodies. Provision of individualized comprehensive high-quality sexuality support is therefore warranted. To achieve this, healthcare professionals should aim to be aware of, and mitigate, ableist and normative assumptions. [ABSTRACT FROM AUTHOR]

Background: Various professional groups are involved in the daily work of the central operating room with the aim of providing the best possible treatment for each individual using modern medical technology (sociotechnical system) in a cost-effective manner. Ensuring perioperative patient safety is of particular importance. At the same time, the efficient use of the central operating room is essential for the economic success of a hospital. Preoperative preparation is a complex process with many substeps that are often difficult to manage. Historically, the focus has been on retrospective learning from errors and incidents. More recent approaches take a systemic view. A central idea is to consider the mostly positive course of treatment and the adjustments to daily work that are currently required by the people involved (Safety-II). By taking greater account of how the many components of the system interact, processes can be better understood and specific measures derived. This strengthens the system's ability to adapt to changes and disturbances, thus ensuring that goals are achieved. The functional resonance analysis method (FRAM) is an internationally recognized method for modelling work as done compared to work as imagined. This paper presents the application of FRAM to preoperative preparation in a major regional hospital. Objective: Is FRAM suitable for improving process understanding in preoperative preparation? Material and methods: An interdisciplinary project team identified relevant functions of preoperative preparation through document analysis and walkthroughs. Based on this, more than 30 guided interviews were conducted with functionaries. The results were presented graphically and specific information, such as safety-related statements or reasons for the variability of functions, were also presented textually. In the next phase, statements were evaluated and compared with the target model and the job descriptions. Results: The FRAM revealed the process as a complex network of relationships. During the modelling process, a varying degree of centrality and variability of certain functions became apparent. From the observations, the project team selected those with high relevance for patient safety and for the efficiency of the overall process in order to prioritize starting points for deriving measures to increase resilience. These starting points relate either to single functions, such as surgical site marking or to multiple functions that are variable in their execution, such as delays due to nonsynchronized duty times. Conclusion: The FRAM conducted provides valuable new insights into the functioning of complex sociotechnical systems that go far beyond classical linear methods. The awareness of operational processes gained and the resulting dynamic view of interactions within the system enable specific measures to be derived that promote resilient behavior and reduce critical variability, thus contributing to increased patient safety and efficiency. [ABSTRACT FROM AUTHOR]

This paper describes a case study of an Outreach and Drop-in Centre (ODIC) established under the National Action Plan for Drug Demand Reduction, Ministry of Social Justice and Empowerment, Government of India. In the quantitative part, data were gathered from the ODIC office documents and analysed using MS Excel. Linear regression analysis demonstrated a relationship between the number of in-centre clients and the number of Community Outreach Programmes (COPs). Similarly, this study examined the relationship between the number of networks established and the number of participants in COPs. Hence, two regression lines were derived accordingly. In addition, qualitative data collected through key informant interviews corroborated the quantitative results. This case study highlights the importance of networks and COPs in increasing the reach of ODIC and ensuring the quality of services. Finally, in partnership with other government agencies, this ODIC sets a model for engaging marginalised adolescents in reducing substance abuse. [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]

A significant body of research has investigated potential correlates of deception and bodily behavior. The vast majority of these studies consider discrete, subjectively coded bodily movements such as specific hand or head gestures. Such studies fail to consider quantitative aspects of body movement such as the precise movement direction, magnitude and timing. In this paper, we employ an innovative data mining approach to systematically study bodily correlates of deception. We re-analyze motion capture data from a previously published deception study, and experiment with different data coding options. We report how deception detection rates are affected by variables such as body part, the coding of the pose and movement, the length of the observation, and the amount of measurement noise. Our results demonstrate the feasibility of a data mining approach, with detection rates above 65%, significantly outperforming human judgement (52.80%). Owing to the systematic analysis, our analyses allow for an understanding of the importance of various coding factor. Moreover, we can reconcile seemingly discrepant findings in previous research. Our approach highlights the merits of data-driven research to support the validation and development of deception theory. [ABSTRACT FROM AUTHOR]

Schools and districts nationwide have heavily emphasized supporting students' health and wellbeing by engaging families and caregivers to truly support the "whole child," as outlined in the Whole School, Whole Community, Whole Child (WSCC) model. The COVID-19 pandemic only heightened the important role of school and family partnerships in supporting children's health. The Chicago Public Schools (CPS) Healthy CPS initiative is designed to support schools in their compliance with existing health and wellness policies to support child health. This study aimed to explore parents' primary health concerns for their children, characterize these views, explore any alignment with WSCC, and identify recommendations for family engagement in school health promotion. Eleven semi-structured focus groups (seven English, four Spanish) were conducted with CPS parents/caregivers. Groups were conducted in spring 2021 on Chicago's West Side, one of the more historically disinvested communities in the city. Focus groups were recorded, transcribed, and analyzed using constant comparison, incorporating both inductive and deductive approaches. Key themes emerged related to parents' perceptions of schools' role in promoting health including: (1) parents see child health as a shared responsibility between families and schools; and (2) parents identify significant structural barriers and inequities that impede child health, such as racism, community violence, and a lack of community resources in their neighborhoods, and believe schools can do more to address them. Parents' viewed child health and wellbeing as multidimensional and stated that these dimensions must be considered holistically. Their views aligned with WSCC family engagement-related components. Parents recommended that schools employ a variety of strategies to engage families. Findings from this paper have implications for engaging families in school health policy and program development as well as implementation, particularly those in lower income, urban communities that have faced a history of structural inequities. Highlights: Chicago Public Schools parents in in this sample see child health as a shared responsibility between families and schools. Consistent with the long-standing evidence documenting historic disinvestment on the West Side of Chicago, participating parents identify significant structural barriers and inequities, such as racism, community violence, and a lack of community resources in their neighborhoods, and believe schools can do more to address them. Parents recommend schools take a variety of strategies to engage families and recommend more leadership opportunities for parents. [ABSTRACT FROM AUTHOR]

Using a mixed-method approach, this present study examined the roles of calling and the relation between life goals and spiritual values among early childhood professionals in New Zealand. Among the 102 participants who completed the surveys, 24 participated in the follow-up individual interviews. In line with previous research, results showed that the five spiritual values—conformity, universalism, tradition, benevolence, and security—positively correlated with at least three intrinsic life goals, but showed a negative correlation with at least three of the four extrinsic goals. In addition, all non-spiritual values—self-direction, stimulation, hedonism, achievement, and power—correlated negatively with at least three of the intrinsic life goals. A similar pattern was found between the correlation between all non-spiritual values and extrinsic life goals. Interview data showed that participants who self-identified as having experienced a call to work with young children actively engaged with their calling. They also affirmed that their calling was experienced at a deeply personal and emotional level. Participants also recognized the important impact of life goals, personal and spiritual values on their work. This paper concludes with implications for future research and practice. [ABSTRACT FROM AUTHOR]

Objectives: The COVID-19 pandemic has had significant impacts on maternal mental health. We explored the lived experiences of women with perinatal depression and anxiety to elucidate their perceptions of how the pandemic influenced their mental health and access to care. Methods: We conducted a qualitative descriptive study using semi-structured interviews. From March to October 2021, purposive sampling was used to recruit a socio-demographically diverse sample of women with self-reported perinatal depression or anxiety who were pregnant or within one year postpartum between March 2020 and October 2021. Interviews were conducted remotely and thematically analyzed. Results: Fourteen women were interviewed. Three major themes arose. Theme 1, Negative impacts of COVID-19 on symptoms of depression and anxiety, described how the pandemic magnified underlying symptoms of depression and anxiety, increased social isolation, generated anxiety due to fears of COVID-19 infection, and caused economic stress. In theme 2, Negative impacts of COVID-19 on access to and quality of health care, women described stressful and isolating delivery experiences, negative psychological impact of partners not being able to participate in their perinatal health care, interruptions and barriers to mental health treatment, and challenges in using telehealth services for mental health care. Theme 3, Positive impacts of COVID-19 on mental health, identified advantages of increased telehealth access and ability to work and study from home. Conclusions for Practice: The COVID-19 pandemic negatively affected women with perinatal depression and anxiety by magnifying underlying symptoms, increasing stress and social isolation, and disrupting access to mental health care. Findings provide support for policies and interventions to prevent and address social isolation, as well as optimization of telehealth services to prevent and address gaps in perinatal mental health treatment. Significance: What is Already Known on this Subject? Quantitative data suggest that the pandemic increased rates of perinatal mental illness. Yet the perspectives of women with perinatal depression and anxiety on how the pandemic affected their mental health and access to care remain underreported. What this Study adds? This paper offers new insight from the lived experience of women with perinatal depression and anxiety on ways the pandemic negatively and positively affected their mental health and access to mental health care. Implications for interventions, policies, and clinical practice are discussed. [ABSTRACT FROM AUTHOR]

Purpose: Within this paper we evaluate the inclusion of the family voice in the domestic homicide review process. We use an Indigenous rubric (Te Pou) developed to ensure a culturally appropriate framework for conducting fatality reviews. We further draw on the creative potential of Indigenous knowledge systems, applying them alongside Western understandings of the engagement of family in homicide reviews, to seed new knowledge. This review has been undertaken early in the process of implementing family interviews to learn from current practices, seeking to improve them and, thereby, be better hosts for those invited to be part of a review. Methods: The process of including family input into the in-depth reviews of family violence homicide reviews, conducted between October 2019 and November 2021, was reviewed against the guidelines specified within Te Pou. Results: While there were strengths within the current process, the review established that further work is required to fully embed cultural understandings and processes within homicide reviews. Indeed, the current process and legislative framework in which it is based, works against relational obligations of reciprocity and a duty to care. Conclusions: Using indigenous frameworks and research methods, it is possible to determine how homicide review processes have the potential to embed trauma rather than providing an opportunity for critical reflection and healing. Repositioning homicide reviews will require a reconceptualization of the legislative framework and support system requirements for review panels. [ABSTRACT FROM AUTHOR]

Background: Cluster headache (CH) is a significant health concern due to its major socioeconomic consequences and most patients being refractory to conventional strategies. For treatment resistant CH, occipital nerve stimulation (ONS) is considered an effective treatment option. Whereas most patients do not adjust the amplitude of the ONS system, a subset changes the amplitude on a regular basis using their remote control, and are therefore referred to as 'voltage tuners'. Anxiety and self-control are thought to be central themes to this behavior. Research on this voltage tuning behavior could provide new insights in the use of ONS as acute attack treatment. To date, voltage tuning has not been assessed for CH. Hence this is a unique study aiming to investigate the occurrence and efficacy of voltage tuning in patients with CH and ONS. Methods: For this analysis, patients with CH who received ONS from 2020–2024, at our university medical center, were included. All patients underwent bilateral ONS implantation. Data on attack frequency, intensity and duration were collected retrospectively. Outcomes on the response, frequency, moment during the day, duration, rationale, sensation, average increase in amplitude, and efficacy of voltage tuning were collected with prospective interviews. Results: Thirty-three patients (M = 20) (42 ± 12.7 years) were included in the current analysis. At 1y follow-up, an overall response rate of 70% (23/33) was found for ONS. In total, 48% (18/33) of patients were defined as voltage tuners. Voltage tuning was performed with an average increase in amplitude of 92 (20–360)%, a frequency of 1–20 times/month and duration of 20 minutes-48 hours. Sensations of voltage tuning were described as "tingling" and/or "pinching". The rationale for voltage tuning in patients varied from prevention and ceasing to lowering the intensity and enhance control of CH attack. Conclusions: Outcomes show that voltage tuning may cease and/or terminate CH attacks and therefore raise interests in the use of ONS as acute attack treatment for patients with resistant CH treated with ONS. Future research on the occurrence and potential of voltage tuning will provide valuable insights for achieving optimal efficacy of ONS and quality of life in patients with CH. [ABSTRACT FROM AUTHOR]

Background: The field of long COVID research is rapidly evolving, however, tools to assess and monitor symptoms and recovery of the disease are limited. The objective of the present study was to develop a new patient-reported outcomes instrument, the Symptoms Evolution of Long COVID‑19 (SE-LC19), and establish its content validity. Methods: The 40-item SE-LC19 instrument was developed based on patient-relevant empirical evidence from scientific literature and clinical guidelines that reported symptoms specific to long COVID. A 2-part mixed-method approach was employed. Part 1: Qualitative interviews with a purposive sample of 41 patients with confirmed long COVID were conducted for the content validation of SE-LC19. During cognitive debriefing interviews, patients were asked to describe their understanding of the instrument's instructions, specific symptoms, response options, and recall period to ensure its relevance and comprehensiveness. Five clinicians of different medical specialties who regularly treated patients with long COVID were also interviewed to obtain their clinical expert opinions on SE-LC19. Part 2: Exploratory Rasch Measurement Theory (RMT) analysis was conducted to evaluate the psychometric properties of the SE-LC19 data collected during the interviews. Results: Overall, patients reported that the instructions, questions, recall period, and response options for SE-LC19 were comprehensive and relevant. Minor conceptual gaps reported by patients captured nuances in the experience of some symptoms that could be considered in future studies. Some patients suggested a revision of the recall period from 24 h to 7 days to be able to capture more symptoms given the waxing and waning nature of some symptoms. Clinicians found the instrument comprehensive with minimal suggestions regarding its content. Exploratory RMT analyses provided evidence that the SE-LC19 questionnaire performed as intended. Conclusion: The present mixed-methods study in patients with confirmed long COVID supports the content validity and applicability of the SE-LC19 instrument to evaluate the symptoms of patients with long COVID. Further research is warranted to explore the psychometric properties of the instrument and refine a meaningful and robust patient-relevant endpoint for use in different settings such as clinical trials and clinical practice to track the onset, severity, and recovery of long COVID. [ABSTRACT FROM AUTHOR]

Background: Breast cancer-related lymphedema (BRCL) is one of the most common causes of upper extremity (UE) lymphedema in developed nations and substantially impacts health-related quality of life. To advance our understanding of the epidemiology and treatment of BRCL, rigorously developed and validated patient-reported outcome measures (PROMs) are needed. This study aimed to demonstrate the iterative content validity of a modular UE lymphedema-specific PROM called the LYMPH-Q UE module. Methods: A multi-step iterative qualitative approach was used. Semi-structured interview data from in-depth qualitative interviews with adult women (18 years and older) with BCRL were used to develop the first set of the LYMPH-Q UE scales. The content validity of these scales was demonstrated with patient and clinician feedback. Over the course of cognitive debriefing interviews, additional concepts of lymphedema worry and impact on work were identified as missing from the LYMPH-Q UE module. Subsequently, two new qualitative studies (a focus group and in-depth concept elicitation interviews with patients) were conducted, and two new scales were developed to measure lymphedema worry and impact on work life and their content validity was demonstrated. Results: Qualitative data from in-depth and cognitive interviews with 15 (age 40–74 years) and 16 (age 38–74 years) women with BRCL, respectively, and feedback from 12 clinical experts, were used to develop and demonstrate the content validity of six LYMPH-Q UE scales measuring symptoms, function, appearance, psychological, information, and arm sleeve. Additionally, data from in-depth interviews with 12 (age 35–72 years) women with UE lymphedema and four focus groups (n = 16 women; age 35–74 years) was used to develop and assess the content validity of two new LYMPH-Q UE scales measuring lymphedema worry and impact on work life. The content validity of the previously established six scales was also demonstrated in these subsequent qualitative studies. Conclusion: The LYMPH-Q UE is a modular PROM developed using international guidelines for PROM development and can be used in clinical practice, research, and quality improvement to enhance patient-centered shared decision-making. This study's innovative and iterative approach to content validation demonstrates that the LYMPH-Q UE is a comprehensive measure that includes important concepts relevant to patients with UE lymphedema. [ABSTRACT FROM AUTHOR]

Objective/Background: The Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is needed. The aim of the study was to evaluate a Swedish translation of the CSD regarding test content and response processes in patients with insomnia. Patients/Methods: In connection with translating the CSD into Swedish, we used cognitive interviewing to evaluate test content and the response process, that is, how people make decisions when responding to survey items. Cognitive interviews were conducted with 13 primary health care patients with insomnia disorder (mean age, 49 years; SD 15.5). Iterative, reparative analysis was used to investigate test content. Descriptive deductive analysis was used to investigate interview transcripts for the themes of the cognitive model: comprehension, retrieval, decision process, and judgement. Together, the themes explain the response process when responding to a patient-reported outcome measure. Results: The overall comprehension of the CSD could be affected by poor adherence to the instructions (comprehension). Patients had difficulty with recall if they did not complete the diary immediately in the morning and just before bedtime (retrieval). They could have problems deciding how to respond to certain items because they imbued sleep-related concepts with extra meaning (decision process), and had trouble finding response alternatives nuanced enough to describe their experience of sleep and tiredness (judgement). Conclusions: This study contributes knowledge on how the instrument is perceived and used by care-seeking patients with insomnia. In this context, the CSD exhibits known flaws such as memory lapses if the diary is not filled in directly in the morning. To increase the accuracy of patients' responses, therapists should support patients in reading the instructions. [ABSTRACT FROM AUTHOR]

Background: Many individuals consider nocturia a significant nuisance, leading to a reduced health-related quality of life (HRQOL). However, there has been a lack of psychometrically sound patient-reported outcome measures to assess the impact of nocturia on patients in Chinese contexts. This study aimed to translate, culturally adapt, and validate the International Consultation on Incontinence Questionnaire Nocturia Quality of Life Module (ICIQ-NQOL) for use among primary care patients in Hong Kong, China. Additionally, it sought to investigate the mechanisms that link nocturia and sleep quality with HRQOL by employing moderated mediation analysis. Methods: The traditional Chinese version of the ICIQ-NQOL was developed through iterative translations, cognitive debriefing interviews, and panel reviews. The psychometric evaluation included assessments of factor structure, convergent validity, concurrent validity, known-group validity, internal consistency, test-retest reliability and responsiveness. Study instruments included the ICIQ-NQOL, International Prostate Symptom Score (IPSS), Pittsburgh Sleep Quality Index (PSQI), and a modified Incontinence Impact Questionnaire-Short Form (IIQ-7). Results: A total of 419 primary care patients were recruited from general outpatient clinics, among whom 228 experiencing an average of two or more nocturia episodes per night over the past four weeks. Confirmatory factor analysis supported the two-factor structure of the ICIQ-NQOL. Concurrent validity was confirmed by moderate correlations between the IIQ-7 total score and the total score as well as two domain scores of the ICIQ-NQOL (r ranging from 0.43 to 0.49, all p < 0.001). The ICIQ-NQOL also had moderate correlations with the IPSS total symptom score (r ranging from 0.40 to 0.48, all p < 0.001). Convergent validity was supported by moderate correlations between the global PSQI score and the total score as well as two domain scores of the ICIQ-NQOL (r ranging from 0.42 to 0.52, all p < 0.001). Known-group comparisons showed that the ICIQ-NQOL could differentiate between patients with and without nocturia in terms of sleep/energy domain score (p < 0.001), bother/concern domain score (p < 0.001), and total score (p < 0.001), each demonstrating a moderate Cohen's d effect size. Item-total correlations corrected for overlap exceeded 0.4, and Cronbach's alpha coefficients were greater than 0.7. Test-retest reliability was confirmed with intraclass correlation coefficients exceeding 0.7 among patients reporting no change in their nocturia symptoms at a 2-week follow-up. Regarding responsiveness, the Cohen's d effect sizes for differences in domain and total scores between the baseline and 2-week follow-up assessments were greater than 0.3 among patients showing improvement in nocturia. Our moderated mediation analysis indicated that sleep quality significantly moderated the impact of nocturia on HRQOL, with a notably stronger indirect effect among females compared to males. Conclusions: The ICIQ-NQOL is a reliable and valid instrument for assessing the HRQOL in primary care patients suffering from nocturia. The findings advocate for gender-specific approaches in the management and treatment of nocturia to optimize HRQOL. [ABSTRACT FROM AUTHOR]

Objective: To determine what firearm policies New Jersey residents believe will prevent school shootings and the extent to which this varies by sex, firearm ownership status, and political affiliation. Methods: A representative sample of New Jersey residents (N = 1,018) was collected via the Eagleton Center on Public Interest Polling (ECPIP). Data were weighted to reflect the state's population. Participants were asked to rate how helpful they perceived different firearm-related policies to be for preventing school shootings. Results: Findings indicate that participants perceived universal and expanded background checks, increased mental health funding, and requiring a license for firearm purchases as most effective for preventing school shootings. Arming school personnel, prayer in schools, decreasing the number of entrances at schools, and secure storage requirements were viewed as less effective. Firearm ownership, sex, and political affiliation significantly influenced perceptions of the effectiveness of these policies. Conclusion: The study examined the perceived effectiveness of policies to prevent school shootings. The study highlights disparities and commonalities in policy support among different groups, emphasizing the importance of collective efforts to address gun violence in schools. [ABSTRACT FROM AUTHOR]

Introduction: The EQ Health and Wellbeing (EQ-HWB) is a new questionnaire for measuring quality of life (QoL) from a broad perspective. The items of the EQ-HWB were derived based on a 'qualitative review' of literature, which reported primarily on Western studies. It can be argued that the QoL is a cultural-related concept and therefore people from China have a different understanding of the QoL. This study aimed to explore whether Chinese citizens could understand the EQ-HWB's candidate items and what they thought of those items. In doing so, we wanted to examine the face validity of the candidate items and explore if further cultural adaptation is necessary. Methods: This research was part of the E-QALY project, in which 36 candidate items were selected for the EQ-HWB from a 97-item pool. In China, three interviewers investigated the face validity of these EQ-HWB candidate items in semi-structured qualitative face-to-face interviews. Respondents were invited to report 'problems' with regard to the interpretation of the items and these problems were grouped into themes. We explored to what extent those themes related to specific cultural aspects in China. We also classified the rates of reported problems for each item into three groups: 1) less than 20%, 2) from 20–50%, and 3) over 50%. Results: For 17 items the rate of reported problems was less than 20%, 15 items fell into the second group (with 20 − 50%) and for 4 items the rate of problems reported was more than 50%. The thematic analysis revealed eight themes: ambiguous problems in the interpretation of 16 items; difficult to understand (11); contained a complex negative expression (10); examples used seemed inappropriate (7); misleading connotation in Chinese (2); long and complex (2); complex response options (1); and use of non-colloquial language (1). Discussion: Our research shows that EQ-HWB candidate items require careful examination to make them more comprehensible. Most of the reported problem themes were generic problems related to the items, and only a few face validity issues appeared to relate to specific cultural aspects in China, even though most of the items were based on Western studies. Our findings are reassuring for the instrument's international application, especially in China. [ABSTRACT FROM AUTHOR]

Patients may feel "lucky" or "unlucky" regarding disease, but questions arise about what they mean. Interviews suggest that US patients often invoke luck in trying to understand why diseases occur and treatments succeed/fail, and do so in the context of religious and spiritual beliefs, struggling with whether luck comes from God; and feeling luck is involved at various points, whether good or bad, regarding the whole or just aspects of an illness, and reflecting personal traits or single events. Social contexts can affect these views. These data have critical implications for researchers, physicians, nurses, chaplains, other providers and patients. [ABSTRACT FROM AUTHOR]

Domestic violence (DV) impacts the safety and well-being of adult victims and their children who are exposed to the violence. Police play a critical role in providing intervention strategies to protect the welfare of victims of DV. Police training, policy and procedures on intervention strategies are often adult-centric leaving little direct police interaction with children. Objective: The objective of the current study is to identify the challenges police officers perceive in providing effective safety planning and risk management strategies for domestic violence victims and their children. Participants, Setting & Methods: Interviews with domestic violence police specialists (n = 12) in Ontario, Canada were used to gather information on police officers' perspective on the challenges they face in executing safety planning and risk management strategies. A dual deductive/inductive approach to a thematic analysis at the sematic level was used (Braun and Clarke, Qualitative Research in Psychology 3:77–101, 2006) to explore themes. Results: The major themes that emerged from the interviews were: (a) challenges with the broader economic/social and judicial system; (b) challenges created by organizational factors; and (c) individual challenges affiliated with police officers' perception of barriers they encountered. These challenges all impact the police response to providing intervention strategies to DV victims and their child(ren). Conclusions: This study highlights the need for police organizations to formalize training, policies, and directives specific to safety planning and risk management for adult victims of DV and their children. [ABSTRACT FROM AUTHOR]

Purpose: Few studies have explored young child sexual abuse (CSA) survivors experience as Participatory Action Research (PAR) researchers, and no studies have included participant researchers who were survivors unknown to statutory child protection services, the latter, a particularly vulnerable group. This exploratory study aimed to trace the nature of engagement and discover the perceived practical benefits and drawbacks of PAR for survivor researchers who had conducted a study into survivor views on confidentiality. Methods: The 8 PAR researchers included six females and two males, aged 12 to 20 years. All self-reported significant mental health problems, and 2 reported a learning disability. PAR participation was traced over 7-months and their views on their experience was sought through an online discussion forum and face to face interviews. Results: PAR was found to increase survivor researcher self-confidence because of learning new skills and discovering others shared experience of abuse and isolation. PAR researchers reported a growth in trust with each other leading to further disclosure, and the seeking of support services. Drawbacks included sustaining engagement because of personal crises. Conclusions: PAR is reported as an empowering process for CSA survivors, however, future research is needed into the relevance of PAR for the development of support services, especially for those unknown to statutory child protection services. [ABSTRACT FROM AUTHOR]

Purpose: Intimate partner violence (IPV) victim advocates are exposed daily to the traumas of their clients, including the potential exposure to an intimate partner homicide (IPH). While research has examined the effects of daily secondary exposure to IPV on victim advocates, little is known about the specific effect of IPH. This study examined how the IPH of a client affected advocates' perception of and approach to their work. Methods: Nine advocates were recruited from the northeastern U.S. and interviewed about their experience of the IPH of a client. Advocate interviews were analyzed using The Listening Guide Analysis which systematically isolates and listens to the different, and often contradictory, voices that a participant uses. Results: Exposure to IPH changed participants' perception of their role, how they defined client, and how they interacted with future clients. At a macro-level, the IPH of a client motivated advocates to advance changes in agency protocol, multisector responses, and state policy based on what they had learned from the IPH. Opportunities to translate shifts in their worldview into tangible changes to protocol and policy were critical to advocate adjustment after the IPH. Conclusions: In order to support advocates after IPH, organizations should acknowledge the potentially transformative effect of IPH and create opportunities for meaning making to assist in advocate adjustment. It is imperative for advocacy organizations to support their employees to prevent advocate burnout and the loss of experienced staff, and to continue to provide effective services to vulnerable members of their communities after IPH. [ABSTRACT FROM AUTHOR]

Autistic adults experience stark health disparities and difficulties accessing health care. Their realities of managing complex health conditions are unknown. Our research explored the experience of Autistic adults self-managing diabetes. Interviews with Autistic adults with diabetes and their support people were thematically analysed to identify three key themes. The Autistic experience influenced diabetes self-management, including autism-unique challenges and strengths. Participants prioritised avoiding Autistic burnout over diabetes self-management; mitigating the psychosocial pressures of neurotypical systems took precedence. Health professionals often separated autism and diabetes subsequently overlooking key factors impacting diabetes self-management. To better meet the needs of Autistic adults, diabetes care and health management more broadly should be considered within the context of autism, including supports for self-management during Autistic burnout. [ABSTRACT FROM AUTHOR]

In Sweden, people living independently and requiring daily living support can access 'housing support', a form of practical, educational, and social support provided by the municipalities. About two-thirds of those receiving this support have neurodevelopmental conditions, primarily autism or ADHD. Many are young adults in the process of adapting to new roles and expectations in different life domains, including education, work, and accommodation. This study aimed to provide a qualitative description of support workers' views on current practice in housing support for young adults (aged 18 to 29) with neurodevelopmental conditions. Semi-structured telephone interviews were conducted with 34 housing support workers across 19 Swedish regions. An inductive qualitative content analysis approach was used. The interviews depicted a complex service, subject to organizational aspects (roles, responsibilities, availability, and allocation), the joint effort of key players (young adults, relatives, and support workers), and practical aspects of service provision (finding common ground for the work, and delivery of support). Some elements of the service were poorly designed for the target group. The support workers expressed a need for more knowledge about neurodevelopmental conditions, but also described new insights related to remote delivery of support. The results raise important questions about how housing support should be organized and delivered to strike the right balance between support and autonomy, meet specific needs, and ensure equal services across municipalities. Future research should adopt multiple perspectives and approaches, to help translate best practice and available evidence into a flexible and sustainable service. [ABSTRACT FROM AUTHOR]

The coronavirus (COVID-19) pandemic has caused widespread disturbances in many human and social service programs. Several studies have examined special education programming adaptations since the onset of the pandemic; however, there has yet to be documentation of pandemic-related changes to transition programming and the impact of these changes for autistic youth. The purpose of this qualitative study was to examine changes in transition programming for autistic youth amid the changing educational landscape. We conducted 12 interviews with caregivers (n = 5) and school providers (n = 7) about transition programming for autistic youth and the COVID-19 impact to these services. The pandemic had positive and negative effects on many aspects of transition programming, including student-focused planning, student development, interagency and interdisciplinary collaboration, family involvement, and program structure and attributes. Elucidation of the ways that the COVID-19 pandemic impacted transition programming from the perspectives of multiple stakeholders has important implications for school personnel and can help to inform the future directions for the field of transition programming research. [ABSTRACT FROM AUTHOR]

This study aimed to examine pathways from child abuse to school adjustment and the roles of self-control and academic stress on the link among North Korean adolescent refugees living in South Korea and native South Korean adolescents. A total of 610 students (adolescents from South Korea = 325 and adolescents from North Korea = 285) living in South Korea, from juniors in middle schools to seniors in high schools, were interviewed in 2017. Multigroup structural equation modeling was used to examine differences in the country of origin on the pathways from abuse to school adjustment via self-control and academic stress. North Korean adolescent refugees were less likely to adjust to their school life than South Korean adolescents. Academic stress was found as a significant mediator between self-control and school adjustment in both South Korean and North Korean adolescents. Child abuse was associated with self-control of South Korean adolescents. Childhood abuse from parents can have an overall influence on individual characteristics and school life for adolescents. By paying attention to this process, comprehensive solutions are urgently required not only to intervene in the problem of abusive parenting behaviors but also to block the path of the expanding negative consequences among both groups of adolescents. [ABSTRACT FROM AUTHOR]

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Background: SMA is a hereditary neuromuscular disease that causes progressive muscle weakness and atrophy. Several studies have shown that the burden of SMA is very high at many levels. Functional assessment tools currently used do not completely address the impact of the disease in patients' life. The objective of this qualitative study was to identify aspects of SMA that are relevant to patients and to design items useful for assessment purposes. Results: Five focus group sessions were run during an annual SMA families meeting in Madrid, Spain. Focus groups were composed by parents of SMA type I children, sitter children type II-III, parents of sitter children type II-III, adult patients, and parents of walker children. Two trained facilitators conducted the focus groups using a semi-structured guideline to cover previously agreed topics based on the input of a Scientific and Patient Advisory Committee. The guideline was adapted for the different groups. According to what was communicated by participants, SMA entails a high burden of disease for both patients and their parents. Burden was perceived in physical, psychological, and social areas. Patient's physical domain was the most relevant for participants, especially for parents of non-ambulant children, followed by limitations of motor scales to capture all changes, parents psychological burden, treatment expectations and patient's psychological burden. Ten domains were the main areas identified as impacted by the disease: mobility and independence, fatigue and fatigability, infections and hospital consultations, scoliosis and contractures, vulnerability, pain, feeding, time spent in care, breathing, and sleep and rest. Conclusions: This study confirms the necessity of evaluating other aspects of the disease that are not assessed in the functional motor scale. Measures of other aspects of the disease, such as pain, fatigue, feeding, should be also considered. A patient-reported outcomes instrument measuring such aspects in a valid and reliable way would be very useful. This study generated a list of new items relevant to be systematically measured in the assessment of the impact of SMA on the patients' everyday life. [ABSTRACT FROM AUTHOR]

Objectives: Patient reported experience measures (PREMs) are tools often utilised in hospitals to support quality improvements and to provide objective feedback on care experiences. Less commonly PREMs can be used to support consumers choices in their hospital care. Little is known about the experience and views of the Australian consumer regarding PREMs nor the considerations these consumers have when they need to make decisions about attending hospital. This study aimed to explore consumer awareness of PREMs, consumer attitudes towards PREMs and the utility of PREMs as a decision-making tool in accessing hospital care. Methods: Qualitative study involving semi-structured interviews conducted over the phone. Participants (n = 40) were recruited from across Australia and purposively sampled according to key characteristics: holding private health insurance, > 30-years of age, may have accessed private hospital care in the past year, variety of educational and cultural backgrounds, and if urban or rural residing. Interviews were audio-recorded, transcribed, and analysed thematically. Results: Four overarching themes and six subthemes were identified from the data. Major findings were that prior awareness of PREMs was limited; however, many had filled in a PREM either for themselves or for someone they cared for following a hospital stay. Most respondents preferred to listen to experience of self or family/friends or the recommendation of their physician when choosing a hospital to attend. Participants appeared to be more interested in the treating clinician than the hospital with this clinician often dictating the hospital or hospital options. If provided choice in hospital, issues of additional costs, timeliness of treatment and location were important factors. Conclusion: While PREMs were considered a possible tool to assist in hospital decision-making process, previous hospital experiences, the doctor and knowing up-front cost are an overriding consideration for consumers when choosing their hospital. Consideration to format and presentation of PREMs data is needed to facilitate understanding and allow meaningful comparisons. Future research could examine the considerations of those consumers who primarily access public healthcare facilities and how to improve the utility of PREMs. [ABSTRACT FROM AUTHOR]

Background: Lower respiratory tract infections (LRTIs) have an immediate significant impact on morbidity and mortality among older adults. However, the impact following the infectious period of LRTI remains understudied. We aimed to assess the short- to long-term impact of LRTIs on hospitalization, mortality, and healthcare utilization in older adults. Methods: Data from the Swedish National Study of Aging and Care in Kungsholmen (SNAC-K) was analyzed, with data from 2001 to 2019 for mortality and 2001–2016 for healthcare utilization. LRTI-exposed participants were identified and matched with LRTI-nonexposed based on sociodemographics, lifestyle factors, and functional and clinical characteristics. Statistical models evaluated post-LRTI hospitalization risk, days of inpatient hospital admissions, healthcare visits, and mortality. Results: 567 LRTIs-exposed participants during the study period and were matched with 1.701 unexposed individuals. LRTI-exposed individuals exhibited increased risk of hospitalization at 1-year (HR 2.14, CI 1.74, 2.63), 3-years (HR 1.74, CI 1.46, 2.07), and 5-years (HR 1.59, CI 1.33, 1.89). They also experienced longer post-LRTI hospital stays (IRR 1.40, CI 1.18, 1.66), more healthcare visits (IRR 1.47, CI 1.26, 1.71), specialist-care visits (IRR 1.46, CI 1.24, 1.73), and hospital admissions (IRR 1.57, CI 1.34, 1.83) compared to nonexposed participants over 16-years of potential follow-up. Additionally, the 19-year risk of mortality was higher among LRTI-exposed participants (HR 1.45, CI 1.24, 1.70). Men exhibited stronger associations with these risks compared to women. Conclusions: LRTIs pose both short- and long-term risks for older adults, including increased risks of mortality, hospitalization, and healthcare visits that transpire beyond the acute infection period, although these effects diminish over time. Men exhibit higher risks across these outcomes compared to women. Given the potential preventability of LRTIs, further public health measures to mitigate infection risk are warranted. [ABSTRACT FROM AUTHOR]

In rich false memory studies, familial informants often provide information to support researchers in planting vivid memories of events that never occurred. The goal of the current study was to assess how effectively we can retract these false memories via debriefing – i.e., to what extent can we put participants back the way we found them? We aimed to establish (1) what proportion of participants would retain a false memory or false belief following debriefing, and (2) whether richer, more detailed memories would be more difficult to retract. Participants (N = 123) completed a false memory implantation protocol as part of a replication of the "Lost in the Mall" study (Loftus & Pickrell, Psychiatric Annals, 25, 720-725, 1995). By the end of the protocol, 14% of participants self-reported a memory for the fabricated event, and a further 52% believed it had happened. Participants were then fully debriefed, and memory and belief for the false event were assessed again. In a follow-up assessment 3 days post-debriefing, the false memory rate had dropped to 6% and false belief rates also fell precipitously to 7%. Moreover, virtually all persistent false memories were found to be nonbelieved memories, where participants no longer accepted that the fabricated event had occurred. Richer, more detailed memories were more resistant to correction, but were still mostly retracted. This study provides evidence that participants can be "dehoaxed", and even very convincing false memories can be retracted. [ABSTRACT FROM AUTHOR]

Autistic students are a growing subgroup within post-secondary schooling; however, little is known about barriers to their success in that context. Research suggests autistic students face more challenges to completing post-secondary education than neurotypical students, but findings often rely on expert opinion and fail to incorporate first-hand perspectives. To address this gap, a qualitative inquiry into barriers to success for autistic post-secondary students was conducted. Thematic Analysis yielded 10 themes in three categories, while two separate cross-cutting themes emerged; themes interact with one another, intensifying concerns of autistic students. Findings can support post-secondary institutions to reflect on the extent to which these barriers are present for their autistic students and modify support services accordingly. [ABSTRACT FROM AUTHOR]

Purpose: This research aimed to evaluate evidence of Pathways parent-mediated early autism intervention as a culturally and linguistically sensitive intervention (CLSI) for Hispanic families with autistic children. Methods: We used Bernal et al.'s ecologically valid (EV) framework to evaluate current practice and Hispanic parents' perceptions of Pathways 1 ½ years after completing the intervention. Both quantitative and qualitative methods were used. Nineteen parents were contacted, of which 11 completed a semi-structured interview about their experience with Pathways. Results: On average, the group that completed the interview was less educated, had more monolingual Spanish speakers, and rated their general experience with the intervention slightly more positively than those who did not agree to complete the interview. A review of Pathways's current practices through the lens of the EV framework suggested that Pathways was a CLSI for Hispanic participants in the domains of context, methods, language, and persons. Parental interviews echoed these strengths. However, Pathways did less well balancing evidence-based intervention strategies for autistic children with the heritage value of respeto. Conclusion: Pathways demonstrated strengths regarding cultural and linguistic sensitivity for Hispanic families with young autistic children. Future work with our community stakeholder group will integrate heritage and majority culture perspectives to strengthen Pathways as a CLSI. [ABSTRACT FROM AUTHOR]

Purpose: In prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent's participation and QoL. Methods: Twenty primary caregivers (29–48 years, all female) of autistic children (7–11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19. Results: Five themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic. Conclusion: The findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs. [ABSTRACT FROM AUTHOR]