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The article offers insights into the social impact of migraine and discusses the choices society has in responding to this problem. It highlights the interconnectedness of individuals with migraine and the potential benefits of accommodating their needs, such as increased productivity and improved well-being for everyone.

Evidence exists regarding the impact of flourishing in individuals living with chronic pain, but there are currently no reviews which collate the literature on flourishing in adolescents living with chronic pain and their parents. Therefore, the aim of this scoping review was to map and review the current literature, to document how flourishing is defined and understood in the literature, and to identify gaps in the field. Six databases were searched (Web of Science, Medline, Embase, APA PsycNet and the Cochrane Central Register of Controlled Trials). In addition, a limited gray literature search was conducted. The resulting data were collated and reported in relation to the review questions, by examining the included papers to search for the presence of flourishing. Database searches resulted in 7326 papers after duplicate removal, with eight remaining papers being assessed for full‐text eligibility. Following full‐text screening, a final four papers were included in the review. Within the papers, flourishing was defined in relation to commonalities of benefit finding, enhanced maturity and growth, and social support. Gaps in the literature and directions for future research are considered. This review suggests that there is a dearth of knowledge and research regarding flourishing among adolescents living with chronic pain and their parents, despite aspects of flourishing identified in limited literature. This warrants further investigation. [ABSTRACT FROM AUTHOR]

Background: A lifelong gluten‐free (GF) diet to manage coeliac disease is recognised to be challenging. This paper comprises two studies: study one aimed to report the opinions of adults with coeliac disease on review provision and explore factors influencing dietary adherence. Study two aimed to report dietetic provision for adults with coeliac disease. Methods: A cross‐sectional online survey was completed by 722 adults with coeliac disease, including validated dietary adherence, health literacy and quality‐of‐life questionnaires. An online and paper survey designed to capture the provision of dietetic services to adults with coeliac disease was completed by 88 dietetic departments within the United Kingdom. Results: Only 26% of adults with coeliac disease were offered annual reviews. In contrast, 85% considered reviews important, with 62% preferring dietetic provision. Those who considered reviews important had lower health literacy, greater dietary burden, poorer GF dietary adherence and lower GF food knowledge (all p < 0.05) compared with those who did not consider reviews important. GF dietary adherence was associated with health literacy, self‐regulatory behaviours, dietary burden and GF food knowledge; 53% agreed with the 'cost of GF food restricts what I eat'; they had poorer GF dietary adherence compared with those who disagreed (p < 0.001). More than 72% of dietetic coeliac review provision provided content on improving access to GF foods and eating out of the home. Conclusions: A subpopulation of adults with coeliac disease have a greater need for support and guidance, which supports the viewpoint that limited resources should be targeted towards patients with the most need for support to enable successful disease management. Key points: The majority of adults with coeliac disease were not receiving healthcare reviews for coeliac disease, whereas 85% would like to have reviews.Adults living with coeliac disease who had lower health literacy, poorer gluten‐free (GF) food knowledge and poorer GF dietary adherence score rated healthcare reviews as important.A varied provision of dietetic services for coeliac disease reviews was evident across the United Kingdom. [ABSTRACT FROM AUTHOR]

Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Background: Stroke profoundly affects quality of life (QOL), including loss of employment, reduced social activity, shrinking social networks and low mood. Dysgraphia (impaired writing) is a common symptom of aphasia yet is rarely targeted in rehabilitation. Recent technological advances might challenge this, since much communication is now conducted digitally through writing. The rehabilitation of writing may therefore help to address the wider consequences of stroke and aphasia. Aims: Can assistive technology (AT) training for people with dysgraphia: (1) improve written output, and are gains achieved only with AT? (2) improve reading comprehension scores, and are gains achieved only with AT? and (3) affect social participation, mood or QOL Methods and Procedures: Design A mixed‐methods, repeated measures, small group study design was adopted (qualitative outcomes will be reported elsewhere). Participants: Recruited from community settings, for example, Stroke Association communication support groups. Inclusion criteria: over 18 years old, aphasia due to stroke, acquired dysgraphia, writing more impaired than speech, fluent English prior to stroke, access to computer and Internet. Exclusion criteria: currently receiving speech and language therapy, significant cognitive impairment, neuromuscular/motor‐speech impairments/structural abnormalities, developmental dyslexia, uncorrected visual/auditory impairments. Procedures: Screening and diagnostic assessments at time T1 (first baseline). Outcome measures at T1; repeated at T2 (second baseline), T3 (end of intervention), T4 (3‐month follow up). Social participation assessment and cognitive monitoring at T2, T3, T4. Intervention: Seven–ten hours individual therapy weekly and additional email support. Participants were trained to operate Dragon NaturallySpeaking (speech to text package) and ClaroRead (read writing aloud). Outcome measures were administered on pen and paper (control) and on computer, with AT enabled only at T3, T4. Outcomes and Results: Computer narrative writing was significantly improved by AT training (Friedman's χ2 (3) = 8.27, p = 0.041), indicating a compensatory effect of AT. Though reading comprehension significantly improved in the computer condition (Friedman's χ2 (3) = 21.07, p = 0.001), gains could not be attributed to the AT. Gains were achieved only when measures were administered on the keyboard, with AT enabled. Thus, a compensatory rather than remediatory effect was suggested. Social network size significantly increased; there were no significant changes in mood/QOL. Individual success rates varied. Conclusion and Implications: The customisable AT training was acceptable to participants and resulted in significantly improved narrative writing. Compensatory AT interventions are a useful adjunct to remediatory writing interventions and may particularly support functional writing. WHAT THIS PAPER ADDS: What is already known on this subject: Writing is rarely spared in aphasia and may present as the most impaired communication modality. Yet, people with aphasia report that writing is seldom included in their rehabilitation. Many communication activities are now conducted digitally through writing, therefore rehabilitation of this is more important than ever before. This study sought to address whether an assistive technology (AT) software package can improve writing and whether any changes were compensatory or remediatory. What this study adds to existing knowledge: This group study found that AT training led to gains in written discourse and social network in people with aphasia and dysgraphia. Gains were not replicated in handwritten tasks, suggesting this was a compensatory therapeutic approach. What are the clinical implications of this work?: AT programs such as this may present speech and language therapists with a practical, pragmatic adjunct to writing or typing therapy, particularly for clients with chronic, intractable impairments for whom remediatory therapy may have a low chance of success. [ABSTRACT FROM AUTHOR]

Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

Background: People with an acquired brain injury (ABI) find it challenging to use social media due to changes in their cognition and communication skills. Using social media can provide opportunities for positive connection, but there is a lack of interventions specifically designed to support safe and successful social media use after ABI. Aims: To investigate the outcomes of completing a social media skills intervention and identify barriers and facilitators for future implementation. Methods & Procedures: The study used a mixed‐methods, pre‐post‐intervention design. A total of 17 adults with an ABI were recruited. Participants completed an intervention that included a short self‐guided course about social media skills (social‐ABI‐lity course), and then participated in a private, moderated Facebook group over a 12‐week period (social‐ABI‐lity Facebook group). Data were collected over this period through observation of group activity and weekly surveys. They were also collected on social media use and quality of life at pre‐intervention, post‐intervention and after 3 months. Participants provided feedback on the experience of participating in the programme via a post‐intervention interview. Outcomes & Results: At post‐intervention, there were significant improvements in confidence in using Facebook (p = 0.002) and enjoyment of using Facebook to connect with others (p = 0.013). There was no significant change in reported quality of life, although participants described the multiple benefits of connection they perceived from involvement in the group. Observational data and feedback interviews were informative about the feasibility and acceptability of the intervention. Conclusions & Implications: This pilot study provided preliminary evidence that an intervention comprising a short, self‐guided training course and a private, moderated Facebook group improved outcomes for people with ABI. Key recommendations for future implementation include embedding active peer moderators within groups and taking an individualized approach to delivery of the intervention. WHAT THIS PAPER ADDS: What is already known on the subject: Research has documented the challenges that people with ABI experience in using social media, and the difficulty for rehabilitation clinicians in providing appropriate support in this field. What this paper adds to existing knowledge: This pilot study reports the outcomes of people with ABI completing a short, self‐guided social media skills course and participating in a private, moderated Facebook group. After the intervention, participants reported significantly increased confidence and enjoyment in using Facebook, described the benefits of connection found in the groups, and suggested potential improvements for future implementation. What are the potential or actual clinical implications of this work?: With the growing use of social media for connection and participation, there is a professional obligation to address social media communication skills in cognitive–communication rehabilitation for people with ABI. The findings of this study will inform interventions and future research to assist people with ABI to build their social media skills for communication, social support and a sense of connection. [ABSTRACT FROM AUTHOR]

Introduction: Participation in work and employment is a milestone of adulthood. People returning to work after burn injury may have physical, psychological, social, and environmental barriers to overcome in order to resume their pre‐injury employment. The aim of this paper is to evaluate qualitative findings regarding return‐to‐employment after burn injury. Methods: A qualitative synthesis was conducted based on the qualitative findings of an earlier mixed methods review. A pre‐determined scoping review protocol was used in the earlier review to search MEDLINE, CINAHL, Embase, PsycINFO, PubMed, Scopus, CCRCT, and CDSR databases between 2000 and Aug 2021. Any papers presenting qualitative data from previously employed adults with cutaneous burn injuries were included. Findings: A total of 20 papers with qualitative data on return‐to‐employment after burn injury were found. Only six included studies focused on return‐to‐employment outcomes and the remaining studies reporting on quality of life and life experiences after burn injury. Common themes included impairments that develop and change over time; occupational identity and meaning; temporal aspects of burn recovery; burn rehabilitation services and interventions; attitudes, knowledge and support of service providers; workplace environments supporting work re‐engagement after burn injury; usefulness of work accommodations; family and social supports, individuals attributes that influence re‐engaging in employment; and accepting and rebuilding. Conclusion: Resumption of work after burn injury is regarded as a key marker of recovery for working‐aged adults by burn survivors and burn care professionals. Support at transition points during the burn recovery process and peer‐led programmes were important. However, limited information currently exists regarding clinical practices, service gaps, and understanding of return‐to‐employment outcomes after burn injury. [ABSTRACT FROM AUTHOR]

People with Down syndrome have complex health care needs which are not always fully met. Health care improvements are required to better meet these needs. Quality indicators are an important tool for improving health care. However, quality indicators for health care for people with Down syndrome are scarce. Existing quality indicators focus on medical (physical) needs or the clinical setting, even though it is acknowledged that quality measures should reflect the total of quality aspects relevant to the population at stake, which may encompass aspects beyond the medical domain. These aspects beyond the medical domain are the focus of the current paper, which aims to provide insight into the way people with Down syndrome live their lives, how health care may fit in, and how this may impact the development of quality indicators. The paper is based on data originating from interviews with people with Down syndrome and their parents as well as focus groups with support staff members working in assisted living facilities for people with intellectual disability. The data revealed a lot of variation in how people with Down syndrome live their lives. Nevertheless, we were able to identify 11 topics, which we grouped into three overarching themes: (1) Being different yet living a normal life; (2) Down syndrome‐(un)friendly society and services; and (3) family perspective. The variation in our data stresses the importance of health care that takes a person's life into account beyond the medical domain, as exemplified by the identified topics. Our findings also show that a good life is not merely depending on good health care supported by well‐defined quality indicators, but on (support in) all life domains. [ABSTRACT FROM AUTHOR]

Purpose: Most people living with HIV (PLH) in the United States are over age 50 and this sector of PLH continues to grow. Aging with HIV can be challenging due to comorbid medical conditions, mental health disorders, substance use, and lack of social and practical support. Additional challenges are faced by older PLH living in the rural United States, such as longer distances to health care, concerns over privacy and stigma, and social isolation. PLH in rural areas have higher mortality rates than urban PLH. We aimed to understand factors associated with HIV care engagement and quality of life in rural US adults over age 50. Methods: We conducted a cross‐sectional study to evaluate the association between patient‐level factors and a combined outcome variable encompassing multiple aspects of care engagement. Findings: Either online or on paper, 446 participants completed our survey. One‐third of the participants (33%) were from the southern United States; one‐third were women; one‐third were non‐White; and 24% completed the survey on paper. In multiple regression analysis, lower income, residing in the southern United States, lacking internet access at home, not having an HIV specialist provider, higher levels of stress, living alone, and longer distance to an HIV provider were all associated with lower engagement in HIV care. Conclusions: Our findings demonstrated multiple potential options for interventions that could improve care engagement, such as providing and enhancing access to technology for health care engagement and remotely delivering social support and mental health services. Research on such potential interventions is needed for older, rural PLH. [ABSTRACT FROM AUTHOR]

Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

Introduction: Throughout the transition to motherhood, changes are experienced across a woman's physical, mental, social, and occupational self. Maternal chronic illness adds the complexity of increased healthcare needs and navigating a high‐risk, medicalised pregnancy, birth, and post‐natal period. Literature concerning motherhood transitions in chronic illness generally focusses on the mother's medical health and pregnancy outcomes; little is known about the impacts on women's occupations, balance, and quality of life. Understanding these issues may help support women in a more tailored and holistic way. Objective: This scoping review aims to gather, analyse, and synthesise existing empirical research on occupational engagement and occupational balance as they impact on wellbeing and quality of life in women with a lifetime chronic illness before and during pregnancy and in early motherhood. Method: The review follows the nine‐stage framework described in the Joanna Briggs Institute Manual for Evidence Synthesis (2020). Five databases were searched: Embase, Medline, PsycINFO, CINAHL, Scopus, and OT Seeker. Data were extracted and examined via content analysis, described in narrative synthesis, summarised into a conceptual framework, and tabulated. Findings: A total of 8,655 papers were discovered on initial search. Following title and abstract screening, 220 full‐text studies were assessed for eligibility, and 46 papers were finally included. Analysis generated four major themes: The Disrupted Transition Journey; Adaptation, Compromise and Choice; Outcomes; and Drawing on What's Available. The themes were conceptualised into a framework to explain how women sought to balance motherhood and illness‐related occupations. Adequate access to information, social support, expert care, and financial resources improved both quality of life and healthcare compliance. Conclusion: Findings of this scoping review deepen the understanding of occupational balance during the transition to motherhood in the context of lifetime chronic illness. Healthcare providers and supportive family and friends can use this knowledge to adapt their approach to assisting women with chronic illness on the motherhood journey. These findings may also inform further inquiry into the scope of occupational therapy practice with this population. [ABSTRACT FROM AUTHOR]

Watchful waiting is a concept that is traditionally not associated with severe and enduring mental illness. This paper, however, boldly argues that the concept could be used as a ground‐breaking and accessible antidote to the perceived inequality experienced by black service users experiencing both mild and severe mental illnesses in England. The novel concepts proposed in this paper are not intended to be consensual, but rather uncompromising to provoke critical thinking in mental health practice. A conceptual framework for watchful waiting in mental health is suggested. [ABSTRACT FROM AUTHOR]

Background: Moral distress is recognized as an international problem that contributes to decreased work productivity, job dissatisfaction and intent to leave for adult Critical Care nurses. Aim: To explore Critical Care nurses moral distress levels using the Moral Distress Scale Revised (MDS‐R) and its relationship with intention to stay. The study reported in this paper was part of a larger study that also investigated Critical Care nurses' work environment in Canada and the Midlands region of the UK. Study design: During January to August 2017 a cross‐sectional survey was distributed to adult Critical Care nurses in the Midlands region of the UK. Methods: Surveys were distributed to adult Critical Care Registered Nurses in the Midlands region of the UK examining moral distress levels and intention to stay in Critical Care, the organization (NHS Trust) and in the nursing profession. Results: Two hundred sixty‐six number of a potential sample of 1066 Critical Care nurses completed the survey (25% response rate). Age and moral distress were significantly positively correlated with intention to stay on their current unit (r = 0.16, P =.05), indicating older nurses were more likely to stay in the critical care unit. Moral distress was negatively correlated with intent to stay scores, showing critical care nurses with higher levels of moral distress were less likely to stay on their unit (r = −0.20, P =.02). Moral distress was also significantly negatively correlated with intention to stay with their current employer (r = −0.28, P <.001). Nurses that stated they had high rates of moral distress were more likely to consider leaving their current employer. Conclusion: Moral distress appears to be an issue among adult Critical Care nurses requiring further exploration and development of effective strategies to reduce this phenomenon and stabilize the workforce by reducing turnover. Relevance to clinical practice: By identifying the top causes of moral distress, tools and strategies can be developed to allow the Critical Care nurse to work within an ethically safe clinical environment and reduce the turnover of experienced adult Critical Care nurses. [ABSTRACT FROM AUTHOR]

Purpose: Rural older people living with HIV (PLH) in the United States are a population of growing size and significance. A better understanding of factors associated with quality of life (QOL), depressive symptoms, and stress in this population—especially modifiable factors—could inform future interventions. Methods: Online or on paper, we surveyed 446 PLH aged 50+ residing in rural counties across the United States (Mage = 56, 67% male, 67% White, and 23% Black). Associations between social support, HIV stigma, satisfaction with medical care, discrimination in health care settings, and structural barriers and health‐related QOL, depressive symptoms, and perceived stress were assessed using multiple linear regressions. Findings: Controlling for demographics, greater social support was associated with better QOL, fewer depressive symptoms, and less stress. Greater HIV stigma was associated with more depressive symptoms and stress. Satisfaction with care was associated with better QOL and less stress. Discrimination in medical settings was associated with lower QOL and more depressive symptoms and stress. Finally, experiencing more structural barriers was associated with lower QOL and more depressive symptoms and stress. Conclusions: In addition to engagement in care and viral suppression, QOL and mental health are also critical considerations for rural older PLH. Increasing social support, reducing or providing skills to cope with HIV stigma, improving quality of care, reducing discrimination and stigma in medical settings, and reducing or mitigating the impact of structural barriers present potential targets for interventions aiming to improve the well‐being of older rural PLH. [ABSTRACT FROM AUTHOR]

Satisfying daily life functioning is essential in mental healthcare. Standard assessments focus on symptoms and are designed to detect underlying vulnerabilities. However, they offer insufficient insight into patterns of contextual variability and resilience. Consequently, interventions are planned using incomplete information. The experience‐sampling method (ESM) is a structured moment‐to‐moment diary assessing the individual's affect, thoughts, perception and behaviour in the daily life context. ESM helps to understand variation in mental states (e.g., anxiety or sleeping problems) as adaptational processes in relation to contextual challenges (functional analysis). Although ESM has been extensively studied across psychological disorders, the adoption by mental health professionals and their patients remains limited because the 'how to' is unclear. This paper presents a practical guide for ESM application in routine clinical care. It integrates empirical knowledge with expert experiences and provides real‐world examples and recommendations for successful implementation. The guide comprises how to engage and motivate patients and how to customize assessments to the patient's needs. It also includes instructions to interpret results and create an atmosphere of shared decision‐making. Experience‐sampling technology has merits for patients with various mental health complaints and across healthcare settings, although the exact use and implementation may vary depending on the individual case. [ABSTRACT FROM AUTHOR]

Disability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families' knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions: Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support. [ABSTRACT FROM AUTHOR]

Objectives: To systematically evaluate the association of individual and contextual social capital with oral health outcomes in children and adolescents. Methods: Electronic searches were performed in PubMed/Medline, Embase, Web of Science and Scopus databases for articles published from 1966 up to June 2021. Two calibrated reviewers screened and critically appraised the identified papers. Observational studies that evaluated the relationship of individual or/and contextual social capital or their proxies with oral health outcomes in children and adolescents using validated methods were included. Quality assessment was conducted using the Newcastle‐Ottawa Scale. Data were extracted for narrative synthesis and meta‐analysis followed by a meta‐regression model. Meta‐analysis using random effects method was used to estimate pooled prevalence ratio (PR) and 95% confidence intervals (CI). Results: Of the 3060 studies initially retrieved, 31 were included in the systematic review and 21 in the meta‐analysis, totalling 81 241 individuals. The clinical outcomes included dental caries and gingival bleeding and subjective outcomes were oral health‐related quality of life (OHRQoL) and self‐rated oral health (SROH). Individuals with lower levels of individual social capital had a higher prevalence of poor clinical (PR 1.11; 95%CI 1.02–1.22) and subjective (PR 1.25; 95%CI 1.09–1.45) oral health conditions. The prevalence of worse clinical (PR 1.34; 95%CI 1.11–1.61) and subjective (PR 1.56; 95%CI 1.13–2.16) oral health outcomes were also associated with lower levels of contextual social capital. In general, the contextual level of social capital exerted more impact, and the subjective oral health outcomes were the more affected. Conclusions: Contextual and individual social capital were positively related to oral health outcomes, such as dental caries, gingival bleeding, SROH and OHRQoL in children and adolescents. [ABSTRACT FROM AUTHOR]

The year 2020 was a challenging and traumatic year for Americans, especially Black Americans. Many Black people quickly succumbed to Coronavirus Disease 2019 (COVID‐19). This paper describes systemic trauma as a lens to conceptualize the effects of COVID‐19, racial stress and trauma, and grief. A recount of the events during the year 2020 is reviewed. Racism towards Black people was at an all‐time high. Complicated and collective grief was ever‐present. As a by‐product of COVID‐19, economic and health disparities resurfaced to further complicate Black people's well‐being. Systemic trauma is described as a comprehensive and inclusive framework that captures the intensity and depth of the trauma Black Americans experienced. We argue that culturally appropriate interventions are needed to help Black people continue to heal from the distress of 2020. Race‐informed trauma treatment is a culturally appropriate intervention that facilitates healing, improves the quality of life, and fosters posttraumatic growth for Black Americans. We offer race‐informed treatment as a theoretical orientation that can facilitate healing and posttraumatic growth for Black people. [ABSTRACT FROM AUTHOR]

Supportive counseling and facilitated referrals to support organizations have shown positive effects on mental health and coping with domestic and family violence. However, the reasons why and how such effects are significant remain unknown. The current paper used data from a randomized controlled trial of a psychosocial intervention implemented in Nepal among 140 abused pregnant women. The hypothesized mediating effects of self‐efficacy and social support on mental health and quality of life of abused pregnant women were tested using serial mediation analyses. Significance of parameter estimates and bias‐corrected 95% confidence intervals (CIs) for the indirect effects were generated using bootstrapping. The postintervention changes in self‐efficacy and social support were found to have significant mediating effects on the relationship between the intervention and changes in both mental health and quality of life of participants post intervention. The positive effects on outcomes were seen at follow‐up as well, though to a lesser extent. Further interventions should focus on enhancing abused women's self‐efficacy and social support to ensure their positive mental health and better lives. [ABSTRACT FROM AUTHOR]

Accessible summary: Music is often part of our lives.We asked parents what music is like for children and young people with profound learning disabilities at home.People listened to music more than they made music at home.Music is used for different reasons.Music can help families feel more connected. ​ Background: Music is weaved within our cultures; it is ever‐present within daily‐life and can considerably influence our mood, well‐being and relationships. This study explores parental perceptions of the role of music in the home‐lives of children and young people with profound and multiple learning disabilities in the UK. It considers parental views of how listening to and making music can shape the mood and behaviours of their child and their relationship. Methods: Using a mixed‐method explanatory sequential design and cross‐sectional survey methodology, the study collected data from parents and carers of children and young people with profound and multiple learning disabilities. Data were collected from an online questionnaire (n = 48) followed by online one‐to‐one interviews (n = 10). Findings: Parents reported that children and young people with profound and multiple learning disabilities more frequently listen to music than make music within the home. They also stated that music is used for enjoyment, to support mood‐regulation and to add structure to the lives of young people with profound and multiple learning disabilities. Parents finally reported that listening to music together helps families feel more connected and strengthened their relationships. Conclusion: This paper outlines the positive role music may have in the home lives of people with profound and multiple learning disabilities and their families. [ABSTRACT FROM AUTHOR]

Introduction: The adoption of remote healthcare methods has been accelerated by the COVID‐19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID‐19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. Methods: This was a mixed‐methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. Findings: Survey responses were received from 292 staff and 1069 patients and carers. Twenty‐three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. Conclusion: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. Patient or Public Contribution: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript. [ABSTRACT FROM AUTHOR]

Background: Young adults with type 1 diabetes (T1D) face complex health challenges, including a heightened risk for distress. To counter this distress, there is a need to develop accessible, acceptable comprehensive care solutions that integrate diabetes and mental health care to enhance self‐efficacy and counter mental health challenges in this population. Objective: To describe the engagement of individuals with lived experience of T1D and mental health challenges in the development of a recruitment strategy to support the co‐design of an innovative integrated care programme. Results: Seven individuals with lived experience formed a Partner Advisory Council (PAC) to recruit young adults (18–29 years old) living with T1D, their friends or family and health researchers and professionals in co‐design interviews (n = 19) and co‐design events (n = 12). The PAC played a key role in developing a comprehensive recruitment strategy, overcoming traditional barriers and stigmas in the design of an integrated model of care. Conclusion: Assuming the presence of mental health challenges in young adults living with T1D during recruitment had far‐reaching impacts on the development of a whole‐person and integrated diabetes and mental health care solution. The efficient recruitment of this sample provided invaluable insights into the nuanced challenges experienced by young adults with T1D, the individual skills developed in response to their mental health challenges and the ways that this understanding can shape future programming to support mental health, quality of life and well‐being. The ongoing involvement of the PAC as co‐researchers underscores the enduring impact of patient engagement in developing integrated care solutions. Patient or Public Contribution: The co‐design of the TECC‐T1D3 model was enriched by the invaluable contributions of individuals with lived experience. This included the engagement of a diverse PAC in the recruitment of participants in co‐design interviews and co‐design events. PAC members actively participated in research decision‐making with their insights informing a robust recruitment strategy. Beyond recruitment, PAC members continue to serve as co‐researchers, shaping ongoing research and actively contributing to the TECC‐T1D3 project. Six PAC members are co‐authors on this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [ABSTRACT FROM AUTHOR]

Objectives: This is the protocol for an evidence and gap map. The objectives are as follows: The aim of this evidence and gap map is to map the available evidence on the effectiveness of social prescribing interventions addressing a non‐medical, health‐related social need for older adults in any setting. Specific objectives are as follows: 1.To identify existing evidence from primary studies and systematic reviews on the effects of community‐based interventions that address non‐medical, health‐related social needs of older adults to improve their health and wellbeing.2.To identify research evidence gaps for new high‐quality primary studies and systematic reviews.3.To highlight evidence of health equity considerations from included primary studies and systematic reviews. [ABSTRACT FROM AUTHOR]

Background: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health‐related quality of life (QoL) in PD. Objective: The aim of this study was to gain insights into the experience of living with the NMS of PD in real‐time using participatory action methodology. Method: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. Results: Four interrelated themes were identified. Emotional well‐being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self‐esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. Conclusion: Findings demonstrated the far‐reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person‐centred and comprehensive approaches to care. Patient or Public Contribution: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development. [ABSTRACT FROM AUTHOR]

Introduction: Many people experience persistent symptoms for more than 12 weeks following SARS‐CoV‐2 infection, which is known as post‐COVID‐19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in‐depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences. Methods: Nineteen semi‐structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis. Results: Five main themes were identified: 'Symptom dismissal', 'Lack of information and support', 'Life before and after Long COVID', 'Psychological impact' and 'Acceptance'. A shift overtime to self‐management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men. Conclusion: Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well‐being. We were not able to explore the experiences of people from non‐conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS. Patient or Public Contribution: Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions. [ABSTRACT FROM AUTHOR]

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

Aim: This study focuses on the fathers of children with chronic illnesses in an effort to clarify how the stressor and the father's sense of coherence (SOC) influence their mental health and how the father's SOC is associated with the social support. Design: Cross‐sectional study. Methods: We conducted a self‐reported questionnaire survey of 137 respondents (51 fathers of children with chronic illnesses, 86 fathers of healthy children) were statistically using ANOVA. Results: The fathers' stressor was significantly related to their SOC. Furthermore, the SOC of the fathers majorly influenced their mental health, while having a buffering effect on the stressor with respect to depression. And their SOC was significantly positively associated with the social support. Our findings underscore that father's SOC has a buffering effect on self‐mental health and is important for maintaining mental health and enhancing SOC to reduce the stressors of these fathers with respect to depression. [ABSTRACT FROM AUTHOR]

Background: Following stroke, a sense of well‐being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well‐being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well‐being, and to examine how the practice context influences care practice. Methods: Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. Results: Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well‐being, this could be deprioritised amidst the time‐oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. Conclusion: Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well‐being within their work. This has implications for the well‐being of people with stroke, and the well‐being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well‐being work remains other to the 'core' work of stroke, and what needs to be considered if stroke services are to better support people's well‐being. Patient or Public Contributions: People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research. [ABSTRACT FROM AUTHOR]

Aim: To investigate the association of resilience with self‐care and quality of life in people with chronic obstructive pulmonary disease. Design: Cross‐sectional study. Methods: Data were collected between February and May 2021. Self‐care was measured with the self‐care of chronic illness inventory, quality of life was measured with the clinical chronic obstructive pulmonary disease questionnaire and resilience was measured with the resilience evaluation scale. Possible confounders were included (sex, age, smoking, time since diagnosis of chronic obstructive pulmonary disease, educational level, social support and pulmonary function). Multiple regression analysis was performed among the determinants, confounders and both outcomes. Results: Participants scored fairly well on resilience (mean 22.5). Self‐care scored reasonably well (mean maintenance 65.9, mean monitoring 70.9, mean management 59.9 and mean confidence 71.5). Quality of life scored mediocre (mean 2.6). The results of the linear multiple regression were resilience, which is associated with self‐care confidence and quality of life when adjusted for possible confounders. This means people with chronic obstructive pulmonary disease with higher resilience have better self‐care confidence and higher quality of life. The outcome contributes to strengthening nursing care and further developing nurses' knowledge. The results can contribute to increasing awareness for healthcare professionals that resilience can potentially increase self‐care and quality of life. [ABSTRACT FROM AUTHOR]

Background: Social isolation and loneliness are more common in older adults and are associated with a serious impact on their well‐being, mental health, physical health, and longevity. They are a public health concern highlighted by the COVID‐19 pandemic restrictions, hence the need for digital technology tools to enable remotely delivered interventions to alleviate the impact of social isolation and loneliness during the COVID‐19 restrictions. Objectives: To map available evidence on the effects of digital interventions to mitigate social isolation and/or loneliness in older adults in all settings except hospital settings. Search Methods: We searched the following databases from inception to May 16, 2021, with no language restrictions. Ovid MEDLINE, Embase, APA PsycInfo via Ovid, CINAHL via EBSCO, Web of Science via Clarivate, ProQuest (all databases), International Bibliography of the Social Sciences (IBSS) via ProQuest, EBSCO (all databases except CINAHL), Global Index Medicus, and Epistemonikos. Selection Criteria: Titles and abstracts and full text of potentially eligible articles were independently screened in duplicate following the eligibility criteria. Data Collection and Analysis: We developed and pilot tested a data extraction code set in Eppi‐Reviewer and data were individually extracted and coded based on an intervention‐outcome framework which was also used to define the dimensions of the evidence and gap map. Main Results: We included 200 articles (103 primary studies and 97 systematic reviews) that assessed the effects of digital interventions to reduce social isolation and/or loneliness in older adults. Most of the systematic reviews (72%) were classified as critically low quality, only 2% as high quality and 25% were published since the COVID‐19 pandemic. The evidence is unevenly distributed with clusters predominantly in high‐income countries and none in low‐income countries. The most common interventions identified are digital interventions to enhance social interactions with family and friends and the community via videoconferencing and telephone calls. Digital interventions to enhance social support, particularly socially assistive robots, and virtual pets were also common. Most interventions focused on reducing loneliness and depression and improving quality of life of older adults. Major gaps were identified in community level outcomes and process indicators. No included studies or reviews assessed affordability or digital divide although the value of accessibility and barriers caused by digital divide were discussed in three primary studies and three reviews. Adverse effects were reported in only two studies and six reviews. No study or review included participants from the LGBTQIA2S+ community and only one study restricted participants to 80 years and older. Very few described how at‐risk populations were recruited or conducted any equity analysis to assess differences in effects for populations experiencing inequities across PROGRESS‐Plus categories. Authors' Conclusions: The restrictions placed on people during the pandemic have shone a spotlight onto social isolation and loneliness, particularly for older adults. This evidence and gap map shows available evidence on the effectiveness of digital interventions for reducing social isolation or loneliness in older adults. Although the evidence is relatively large and recent, it is unevenly distributed and there is need for more high‐quality research. This map can guide researchers and funders to consider areas of major gaps as priorities for further research. [ABSTRACT FROM AUTHOR]

Chronic wounds can severely limit patient's social life. This cross‐sectional study investigated quantitatively social support of patients with chronic wounds, its association with health‐related quality of life as well as qualitatively changes in social participation of these patients. Overall, 263 patients from seven countries participated. The most frequent wound class was leg ulcer (49.2%). Results revealed generally high levels of social support (mean global score: 5.5) as measured with the Multidimensional Scale of Perceived Social Support. However, individuals differed considerably (range 1.0–7.0). All dimensions of social support differed by patients' family and living situations (p < 0.001 to p = 0.040) and were positively correlated with generic health‐related quality of life (r = 0.136–0.172). Having children, living with others and being in a relationship were significant predictors of having higher global social support. Patients reported great support from family members. Many participants reported no changes in relationships with friends. Wound care managers took an important role and provided additional emotional support. Patients reported a range of discontinued activities. Despite the high overall level of social support, inter‐individual differences should be acknowledged. The importance of family carers should be acknowledged to be able to reduce caregiver burden and to ensure high‐qualitative wound care. [ABSTRACT FROM AUTHOR]

Background: Given the increasing number of cancer survivors, eHealth may be an effective means to improve lifestyle‐related behaviours. Limited data are available on the use of eHealth by post‐cancer patients. The present study aimed to analyse the contexts of use to identify the determinants of cancer survivors' adherence and motivation to use a web application offering nutrition and physical activity coaching. Methods: Individual semi‐structured interviews were conducted with cancer survivors who participated in an 8‐week online program for health behaviour change. The interviews were analysed using thematic analysis. Results: Fifteen patients with a mean (SD) age of 62 (4.2) years completed the interview. Four themes relating to the environment and context of use were identified: digital use, social relations, health, and digital health interventions. Participants were familiar with digital tools through their professional work. Their motivation and adherence to the program improved through social relations; notably, a supportive family in addition to a trusted prescriber, continuity in the care pathway, and an appropriate choice of design features in the digital health intervention. With cancer survivorship, individuals no longer define themselves as sick but still need support to envisage the future more serenely. Conclusions: Cancer survivorship plays a special role in people's adherence to online interventions for health behaviour change in addition to the influence of their social relations and health environment. Key points: The study aimed to analyse the contexts of use to identify the determinants of cancer survivors' adherence and motivation to use a semi‐automated web application offering nutrition and physical activity coaching. Motivation and adherence to the program improved through social relations; notably, a supportive family, in addition to a trusted prescriber, continuity in the care pathway, and an appropriate choice of design features for in the digital health intervention. With cancer survivorship, individuals no longer define themselves as ill sick but still need support and guidance to envisage the future more serenely. [ABSTRACT FROM AUTHOR]

Aims: There is increasing interest in the role of peer support in diabetes care. However, technology‐mediated peer support in paediatric type 1 diabetes remains understudied.We aimed todescribe technology‐mediated peer support interventions for children living with type 1 diabetes, their caregivers and healthcare providers. Methods: CINAHL, Embase and MEDLINE (Ovid) were searched from Jan 2007 to June 2022. We included randomised and non‐randomised trials with peer support interventions for children living with diabetes, their caregivers and/or healthcare providers. Studies examining clinical, behavioural or psychosocial outcomes were included. Quality was assessed with the Cochrane risk of bias tool. Results: Twelve of 308 retrieved studies were included, with a study duration range of 3 weeks to 24 months and most were randomised trials (n = 8, 66.67%). Four technology‐based interventions were identified: phone‐based text messages, video, web portal and social media, or a hybrid peer support model. Most (58.6%, n = 7) studies exclusively targeted children with diabetes. No significant improvement was observed in psychosocial outcomes (quality of life, n = 4; stress and coping, n = 4; social support, n = 2). Mixed findings were observed in HbA1c (n = 7) and 28.5% studies (n = 2/7) reported reduced incidence of hypoglycaemia. Conclusions: Technology‐mediated peer support interventions may have the potential to improve diabetes care and outcomes. However, further well‐designed studies are necessary that address the needs of diverse populations and settings, and the sustainability of intervention effects. [ABSTRACT FROM AUTHOR]

Objective: This research study aims to identify the fundamental components of community adaptation for a culturally tailored care partner activation program for Filipino American family caregivers of patients with Alzheimer's Disease and related dementia (ADRD). Design: The study utilized focus group interviews with community nurse leaders, stakeholders, and family caregivers of patients with ADRD. Results: The research revealed that education and knowledge about the disease, community‐based services and facilities, support groups and resources, spiritual and cultural values, and access to transportation are all critical components for community adaptation. Conclusion: The findings suggest that a culturally tailored care partner activation program that incorporates these components can enhance the quality of life for Filipino American caregivers and their loved ones with ADRD. The nursing implications of the study underscore the importance of nurses being culturally competent and sensitive to the unique challenges faced by Filipino American caregivers. Nurses can provide valuable support to caregivers by educating them, connecting them with community resources, and advocating for culturally responsive care practices. [ABSTRACT FROM AUTHOR]

Objective: This study aims to examine in depth the perceptions of postoperative symptom management and coping experiences of individuals with prostate cancer. Material‐Method: The study was conducted with 15 individuals with prostate cancer using a phenomenological research design, which is a qualitative research design. Interviews were conducted via the WhatsApp application. Results: The data were analysed using Colaizzi's phenomenological method. In the data analysis, two categories, five main themes, and 15 sub‐themes emerged. In the category of symptom management perception, there are themes of pain management processes, the use of complementary and alternative therapies and practices to cope with symptoms and improve quality of life. In the category of coping experiences, the themes of individual coping, interpersonal relations, and productivity were obtained. Conclusion: Our study suggests that individuals with prostate cancer have difficulty in symptom management in the postoperative coping process, but they managed them effectively with the support of their spouse, family, and health care professionals. [ABSTRACT FROM AUTHOR]

Psychological problems have become a substantial burden on refugee communities, with a considerable impact on refugee children's quality of life and well‐being. The available studies reveal growing mental health disorders in refugee children and adolescents, particularly traumas, anxiety, and depression disorders. This review aims to examine empirical evidence relating to the mental health of refugee children and adolescents in the Middle East. Following the Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines, this systematic literature review (2010–2020) identified 54 studies about Middle Eastern refugee children and adolescents' mental health. Eighteen studies were excluded based on their lack of relevance to the focus of the review. Of the remaining records, ten reported common mental health disorders, ten reported on Post‐traumatic Stress Disorder, three reported the importance of mental health promotion in schools, while the others discussed protective factors. The results highlight a need to understand the mental health support needs of this group, add knowledge to this area of inquiry and provide baseline data regarding Middle Eastern refugee children and adolescents mental health. Differences across research designs were recorded to contextualize the quality of the study results. There is a paucity of studies investigating the causality, prevalence, risk factors, and interventions of non‐traumatic‐psychiatric disorders as well as the role of teacher in strengthen refugee's mental health. Limited information is available about suicidality and self‐harm, protective factors, adversity, adaptation, acculturation, and social demographics in refugee children. [ABSTRACT FROM AUTHOR]

Adolescents with a visible difference to the face or body (e.g., due to a congenital condition, illness, or injury), may be at risk of elevated psychological distress. Young Person's Face IT (YPF), a web‐based psychosocial intervention, has displayed effectiveness, but no previous study has specifically evaluated its cost‐effectiveness. The aim of our study was to investigate whether YPF could be a cost‐effective alternative for psychosocial support to adolescents distressed by a visible difference, relative to care‐as‐usual (CAU). Within the context of a randomized controlled trial in Norway, 102 participants (43% boys) were allocated to intervention (n = 55) or waiting list control group (n = 47). Mean age was 13.9 years (SD = 1.71; range 11–18), and all self‐identified as experiencing distress related to a visible difference. Participants answered questionnaires including measures of health‐related quality of life and social anxiety at baseline and 3‐month follow‐up. A health economic evaluation using the method of cost‐utility analysis was performed, including quality‐adjusted life‐years (QALYs). Results indicated that the incremental cost‐effectiveness of YPF was 63,641 Norwegian kroner per QALYs gained, which is well within the acceptability threshold in the Norwegian healthcare sector. Hence, YPF could potentially be considered a cost‐effective intervention for adolescents experiencing distress related to a visible difference, but more research is needed that includes comparisons of YPF to other health‐ and societal resources and long‐term follow‐ups. Our study also constitutes an addition to research as, compared to interventions for somatic diseases, there is a lack of studies exploring the cost‐effectiveness of psychological interventions. [ABSTRACT FROM AUTHOR]

Aim: This systematic review synthesized quantitative evidence from the past decade of the effectiveness of peer support programmes in improving the well‐being and/or quality of life (QoL) for parents/carers of children with disability/chronic illnesses. Background: For children with disability or chronic illness, parents/carers are critical in enabling or limiting their child's development. The parent's/carer's ability to provide the necessary responsive and structured care is impacted by several factors, including their own personality, skills, resources and well‐being. Peer support programmes often aim to build parent/carer and/or family capabilities. Although studies and reviews have found positive benefits arising from such programmes, the impact of such programmes, specifically on well‐being and QoL, is unknown Results: Quantitative studies published between 2011 and 2020 that examined the impact of programmes with a significant peer support component on parental/carer well‐being, QoL and/or distress were identified from four databases and were searched and yielded 3605 articles, with 13 articles meeting the inclusion criteria. The results suggested that peer support is effective for reducing distress and improving the well‐being and QoL among parents of children with disabilities; however, the evidence is limited by a high risk of bias in the included studies. Conclusions: Although existing evidence suggests that programmes for parents/carers with a significant peer support component are beneficial for well‐being and QoL, rigorous methodologies are needed in the future to gain a better understanding of the benefits of such programmes. [ABSTRACT FROM AUTHOR]

Background: Deafblindness is a rare condition, and its prevalence has been reported to be approximately 1 in 27 000 new‐borns worldwide. For individuals with deafblindness, lifelong interventions and support are needed to be able to develop communication, be active and preserve a good quality of life. Because little is known about what kind of support and interventions can be offered to children with deafblindness, the aim was to summarize and disseminate research findings regarding this topic. Methods: Integrative review principles were employed. Systematic searches in eight databases and additional manual searches were conducted. The inclusion criteria were as follows: original studies published between 2000 and 2021 examining either interventions for children between 0 and 18 years of age with deafblindness or interventions aimed at children with deafblindness but offered to their relatives or professionals working with them. Studies on support for family members were also sought. Study characteristics were described, and key findings were synthesized into categories based on their similarities. Results: Of the 6268 identified original studies, 32 were included. The key outcomes from the included studies were synthesized into three categories, with two categories illustrating the goal/intention of the intervention (social interaction and communication, motivation and participation) and one focusing on or identifying the action taken to benefit the child (adaptation of the educational environment). Social interaction and communication was the dominant category, covering 24 of the 32 included studies. Conclusions: This review concludes that there are a limited number of evaluated interventions for children with deafblindness. In many cases, the interventions were adapted to the individual child's needs, and most of them were found within the area of social interaction and communication. More research is needed to strengthen the level of evidence for interventions for children with deafblindness. [ABSTRACT FROM AUTHOR]

Aim: This study explored the views of an international sample of registered nurses and midwives working in health and social care concerning socially assistive robots (SARs), and the relationship between dimensions of culture and rejection of the idea that SARs had benefits in these settings. Methods: An online survey was used to obtain rankings of (among other topics) the extent to which SARs have benefits for health and social care. It also asked for free text responses regarding any concerns about SARs. Results: Most respondents were overwhelmingly positive about SARs' benefits. A small minority strongly rejected this idea, and qualitative analysis of the objections raised by them revealed three major themes: things might go wrong, depersonalization, and patient‐related concerns. However, many participants who were highly accepting of the benefits of SARs expressed similar objections. Cultural dimensions of long‐term orientation and uncertainty avoidance feature prominently in technology acceptance research. Therefore, the relationship between the proportion of respondents from each country who felt that SARs had no benefits and each country's ratings on long‐term orientation and uncertainty avoidance were also examined. A significant positive correlation was found for long‐term orientation, but not for uncertainty avoidance. Conclusion: Most respondents were positive about the benefits of SARs, and similar concerns about their use were expressed both by those who strongly accepted the idea that they had benefits and those who did not. Some evidence was found to suggest that cultural factors were related to rejecting the idea that SARs had benefits. [ABSTRACT FROM AUTHOR]

Aims: Facilitated self‐management support programmes have become central to the treatment of chronic diseases including diabetes. For many children and young people with diabetes (CYPD), the impact on glycated haemoglobin (HbA1c) and a range of self‐management behaviours promised by these programmes remain unrealised. This warrants an appraisal of current thinking and the existing evidence to guide the development of programmes better targeted at this age group. Methods: Create a narrative review of systematic reviews produced in the last 3 years that have explored the impact on CYPD of the four key elements of self‐management support programmes: education, instruction and advice including peer support; psychological counselling via a range of therapies; self‐monitoring, including diaries and telemetric devices; and telecare, the technology‐enabled follow‐up and support by healthcare providers. Results: Games and gamification appear to offer a promising means of engaging and educating CYPD. Psychological interventions when delivered by trained practitioners, appear to improve HbA1c and quality of life although effect sizes were small. Technology‐enabled interactive diaries can increase the frequency of self‐monitoring and reduce levels of HbA1c. Telecare provided synchronously via telephone produced significant improvements in HbA1c. Conclusions: The cost‐effective flexibility of increasing the reliance on technology is an attractive proposition; however, there are resource implications for digital connectivity in underserved populations. The need remains to improve the understanding of which elements of each component are most effective in a particular context, and how to optimise the influence and input of families, caregivers and peers. [ABSTRACT FROM AUTHOR]

Purpose: For cancer survivors, social functioning greatly influences other quality of life dimensions. While there is potential for differences in social functioning to vary as a function of geographic residence, few studies examine the social functioning of rural cancer survivors specifically. This study aims to help fill this gap. Methods: This was an embedded mixed‐methods study where all participants completed a questionnaire, and some were purposively selected to complete an interview to gather more information about social functioning (ie, social roles, activities, network, support, and constraint). Participants (n = 93; 63% rural) were recruited through a state cancer registry and cancer care facility. Participants were predominately White, non‐Hispanic (92.47%), roughly half female (54.84%), and on average, diagnosed in the past two years (SD = 1.68), and 61.45 (SD = 10.87) years old. Findings: Few differences in the social functioning of rural and nonrural participants were found on questionnaires, though rural participants reported larger networks and more overall support. Across groups, common themes in the interview data were the experience of both social support (eg, instrumental support) and social constraint (eg, others minimizing participants' problems or sharing their own negative experiences). Conclusions: This was the first cancer survivorship study to thoroughly examine social functioning by geographic residence. Rural cancer survivors described some unique strengths, but major group differences were not apparent. All participants highlighted situations when others, even with good intentions, were unhelpful to them. Future interventions to improve social functioning could work to dispel the belief that cancer survivors should handle their cancer on their own. [ABSTRACT FROM AUTHOR]

Patients with diabetic foot ulcer have a significantly lower quality of life. Quality of life could be connected to other psychological or social processes. The purpose of this study was to examine the relationships between social support, decision regret, self‐stigma, and quality of life in patients with diabetic foot ulcers. The sample of the study consisted of 229 diabetic foot ulcer patients. Data were collected from September 2019 to March 2020. The demographic and clinical information, the Stigma Scale for Chronic Illness, Medical Coping Scale, Social Support Scale, and Quality of Life scale were used to assess the quality life for diabetic foot ulcer. Pearson correlation coefficient and structural equation modelling were used for data analysis. The quality of life was negatively correlated with self‐stigma, positively correlated with social support, giving up coping, and not significantly correlated with confrontation coping and avoidance coping. Self‐stigma has significant indirect effects on quality of life through social support and coping style. Further clinical intervention strategies for decreasing self‐stigma as well as strengthening social support and positive coping styles are needed to inform diabetic foot ulcer patients, thus improving their quality of life. [ABSTRACT FROM AUTHOR]

Introduction: The novel coronavirus SARS‐CoV2 (COVID‐19) was declared a global pandemic in 2020 with the greatest risk to older adults. Prolonged restrictions and isolation threaten the social and emotional welfare of vulnerable groups with concerns focused on the long‐term impact of this pandemic on the health and well‐being of aging populations. Purpose: Using the Socioemotional Selectivity Theory (STT) as a conceptual framework, the purpose of this literature review was to explore the impact of COVID‐19 on the psychological and social well‐being of older adults. Methods: Numerous academic and healthcare‐related databases were searched to yield 24 relevant primary research articles, published during the pandemic (2020–2022), for analysis. Results/Conclusions: Overall results indicated the pandemic had a significant negative affect on the psychological and social well‐being of older adults to include those with cognitive impairments and dementia despite perceptions of reduced awareness. There were significant differences between age groups with older adults reporting greater emotional stability and coping skills than younger cohorts. Although supportive services and the use of technology‐enhanced well‐being these resources were reduced during the pandemic due to lack of trained staff, funding, and other socioeconomic or political barriers. The SST proposes that feelings of satisfaction, a sense of belonging, and purpose are important for emotional well‐being but the pandemic challenged these goals and, for many, resulted in stress, anxiety, and depression. Clinical Relevance: Healthcare providers and policymakers need to be aware of the negative consequences triggered by the prolonged pandemic and take measures to provide services that support the psychosocial well‐being of older adults. [ABSTRACT FROM AUTHOR]

Background: Views on social care related quality of life (SCRQol) are typically gathered directly from individuals or from proxy informants. Easy‐read options are available, although such methods may not be accessible to those with greater communication challenges. Methods: Fifteen people with intellectual disabilities were interviewed about their SCRQoL using Talking Mats® (TM). A descriptive approach was taken to exploring what people had to say. Results: Participants reported high levels of satisfaction with living conditions and personal care routines. They were mostly satisfied with the level of choice and control they had and with their carers. Conclusions: People with intellectual disabilities who have greater communication challenges can make meaningful contributions to the assessment of the care they receive. Talking Mats is one tool which can be used to support people with intellectual disabilities to give their views. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has significant impact on long‐term care (LTC) residents' health and well‐being. Objectives: This study investigated resident experiences of loneliness during the COVID‐19 pandemic in Canadian LTC homes to offer lessons learned and implications. Methods: 15 residents and 16 staff members were recruited from two large urban Canadian LTC homes with large outbreaks and fatalities. We used a telepresence robot to conduct one‐on‐one semi‐structured interviews with participants remotely. We applied the Collaborative Action Research (CAR) methodology and report the early phase of CAR focused on collecting data and reporting findings to inform actions for change. Thematic analysis was performed to identify themes. Results: Four themes were identified. The first two themes characterise what commonly generated feelings of loneliness amongst residents, including (1) social isolation and missing their family and friends and (2) feeling hopeless and grieving for lives lost. The second two themes describe what helped residents alleviate loneliness, including (3) social support and (4) creating opportunities for recreation and promoting positivity. Conclusions: Residents living in LTC experienced significant social isolation and grief during the pandemic that resulted in loneliness and other negative health consequences. Implications for practice: Promoting meaningful connection, safe recreational activities and a positive atmosphere in LTC homes during the pandemic may help mitigate residents' experiences of loneliness due to social isolation and/or grief and enhance their quality of life. [ABSTRACT FROM AUTHOR]

Background: Living with chronic obstructive pulmonary disease stage III or IV has a major impact on a person's everyday life. This qualitative study focuses on women with chronic obstructive pulmonary disease stage III or IV. Aim: The aim of this study was to describe women's experiences of living with chronic obstructive pulmonary disease stage III or IV. Method: A purposive sample of fifteen women with chronic obstructive pulmonary disease stage III or IV participated in the study. Data were collected through individual semi‐structured interviews that were subjected to qualitative content analysis. Findings: One theme was identified, stabilizing an ever‐present breathlessness by restoring strength, and three categories are as follows: managing a restricted everyday life as an expert of their illness, being afraid of contracting infections leading to suffocation and suffering and importance of continuous help and support from significant others and digital media. Breathlessness restricted women with chronic obstructive pulmonary disease, living with a body they have to wait for. Managing everyday life was adapted to their limited abilities and energy. This required detailed planning, good knowledge of their breathing and body. Women were afraid of contracting life‐threatening infections that caused suffering, especially COVID‐19. The fear leads to isolation and digital media was described as an important means of communication. Significant others gave support and help that was practical and emotional. Women with chronic obstructive pulmonary disease experienced lack of continuous help and support from healthcare professionals. Conclusion: Stabilizing an ever‐present breathlessness by restoring strength required women with chronic obstructive pulmonary disease stage III or IV to conduct detailed planning to manage everyday life. Being afraid of contracting infections and the consequences of suffocation had increased since the pandemic COVID‐19 outbreak, which led to self‐isolation and an inactive everyday life. To get help, support and socialize, women used digital media. [ABSTRACT FROM AUTHOR]