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Summary: The short shelf life of fresh strawberries limits its marketing potential, despite its valuable economic and nutritional benefits. An environmentally friendly fresh‐keeping paper was prepared with oregano essential oil (OEO) and tea polyphenols (TP) and used in the storage of strawberries. Results showed that, during the late storage period, the TP and OEO fresh‐keeping paper treatments reduced malondialdehyde (MDA) content by 29.04% and 34.47%, respectively, compared with the control samples. The treatments also reduced decay incidence, weight loss, epidermal microorganisms and total anthocyanins content (TAC). Furthermore, the treatments reduce polyphenol oxidase (PPO) activity, delay the colour development and maintain better sensory attributes. Notably, OEO fresh‐keeping paper treatment not only increased the titratable acidity (TA) and total soluble solids (TSS) content but also improved the scavenging ability of reactive oxygen species by maintaining high levels of superoxide dismutase (SOD) and catalase (CAT) activity. These results demonstrated that fresh‐keeping paper treatment has the potential to extend the post‐harvest life of strawberries and improve their quality. [ABSTRACT FROM AUTHOR]

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.

Objective: This study assessed the features of the 100 most‐cited papers on oral health‐related quality of life (OHRQoL). Methods: The 100 most‐cited OHRQoL papers were collected from Web of Science, adopting a combined keyword search strategy. Google Scholar and Scopus databases were searched to compare citations. The following data were extracted from papers: title of the paper, number of citations, authorship, country, year of publication, title of the journal, study design, sample size, topic and OHRQoL instruments used. Graphical bibliometric networks were created using VOSviewer software. Results: The number of citations of the top 100 most‐cited OHRQoL papers ranged from 73 to 949. Fifty‐six papers received at least 100 citations and two received more than 400 citations. Most papers were from Canada (23%) and had been published in Community Dentistry and Oral Epidemiology (37%). David Locker was the most‐cited author (25 papers; 3,521 citations). The cross‐sectional study design was the most common (68%). The impact of oral health conditions on OHRQoL (43%) was the most frequent topic, and the Oral Health Impact Profile (OHIP) was the most commonly used OHRQoL instrument (48%). Conclusions: This bibliometric analysis highlighted the characteristics of the 100 most‐cited OHRQoL papers, demonstrating that this field is far from saturated. This list of the most‐cited articles can provide a reference point to guide oral health research, education and services. [ABSTRACT FROM AUTHOR]

Atopic dermatitis (AD) is a disease that can have a high impact on quality of life, especially due to itch and skin pain. This paper utilizes expertise from members of the International Society of Atopic Dermatitis (ISAD)/Oriented Patient‐Education Network in Dermatology (OPENED) task force to review the epidemiology, pathophysiology and exacerbating factors of itch and pain in atopic dermatitis. General principles of treatment are provided, as well as a more detailed evaluation of topical and systemic therapies. Educational and psychological approaches to itch and pain in atopic dermatitis are proposed, along with expert recommendations for the management of itch and pain in atopic dermatitis. [ABSTRACT FROM AUTHOR]

Heart failure (HF) is common and associated with a poor prognosis, despite advances in treatment. Over the last decade cardiovascular outcome trials with sodium–glucose co‐transporter 2 (SGLT2) inhibitors in patients with type 2 diabetes mellitus have demonstrated beneficial effects for three SGLT2 inhibitors (empagliflozin, canagliflozin and dapagliflozin) in reducing hospitalisations for HF. More recently, dapagliflozin reduced the risk of worsening HF or death from cardiovascular causes in patients with chronic HF with reduced left ventricular ejection fraction, with or without type 2 diabetes mellitus. A number of additional trials in HF patients with reduced and/or preserved left ventricular ejection fraction are ongoing and/or about to be reported. The present position paper summarises recent clinical trial evidence and discusses the role of SGLT2 inhibitors in the treatment of HF, pending the results of ongoing trials in different populations of patients with HF. [ABSTRACT FROM AUTHOR]

The European Academy of Dermatology and Venereology (EADV) has started the 'Healthy Skin @ Work' campaign aimed to raise awareness among the public and EU authorities on the frequency and impact of occupational skin diseases (OSDs). The EADV Task Forces (TFs) on Quality of Life and Patient Oriented Outcomes (QoL/PO) and on OSD present their mutual position statement on QoL assessment in OSDs. The EADV TFs recommend the use of the DLQI as a dermatology‐specific instrument and SF‐36 as a generic instrument in health‐related (HR) QoL studies on OSDs. The OSD‐specific questionnaire, LIOD, is not recommended for general use in its present form because of its three months recall period. The EADV TFs discourage the use of non‐validated and of non‐validated modifications of previously validated HRQoL instruments. The EADV TFs wish to encourage research into: the HRQoL impact of OSDs other than occupational contact dermatitis and hand eczema; comparisons between the effects of different treatments and other interventions on HRQoL in OSDs; and into the HRQoL impairment of patients with OSDs from different countries, and with different provoking factors, to predict if the results of successful therapeutic and educational interventions may be generalized across countries and between occupations. [ABSTRACT FROM AUTHOR]

In July 2015, the Journal of the American Geriatrics Society published a manuscript titled, "Failing to Focus on Healthy Aging: A Frailty of Our Discipline?" In response, the American Geriatrics Society (AGS) Clinical Practice and Models of Care Committee and Public Education Committee developed a white paper calling on the AGS and its members to play a more active role in promoting healthy aging. The executive summary presented here summarizes the recommendations from that white paper. The full version is published online at GeriatricsCareOnline.org. Life expectancy has increased dramatically over the last century. Longer life provides opportunity for personal fulfillment and contributions to community but is often associated with illness, discomfort, disability, and dependency at the end of life. Geriatrics has focused on optimizing function and quality of life as we age and reducing morbidity and frailty, but there is evidence of earlier onset of chronic disease that is likely to affect the health of future generations of older adults. The AGS is committed to promoting the health, independence, and engagement of all older adults as they age. Geriatrics as an interprofessional specialty is well positioned to promote healthy aging. We draw from decades of accumulated knowledge, skills, and experience in areas that are central to geriatric medicine, including expertise in complexity and the biopsychosocial model; attention to function and quality of life; the ability to provide culturally competent, person‐centered care; the ability to assess people's preferences and values; and understanding the importance of systems in optimizing outcomes. J Am Geriatr Soc 67:17–20, 2019. [ABSTRACT FROM AUTHOR]

Mobility can be defined as the ability to move or be moved freely and easily. In older adults, mobility impairments are common and associated with risk for additional loss of function. Mobility loss is particularly common in these individuals during acute illness and hospitalization, and it is associated with poor outcomes, including loss of muscle mass and strength, long hospital stays, falls, declines in activities of daily living, decline in community mobility and social participation, and nursing home placement. Thus, mobility loss can have a large effect on an older adult's health, independence, and quality of life. Nevertheless, despite its importance, loss of mobility is not a widely recognized outcome of hospital care, and few hospitals routinely assess mobility and intervene to improve mobility during hospital stays. The Quality and Performance Measurement Committee of the American Geriatrics Society has developed a white paper supporting greater focus on mobility as an outcome for hospitalized older adults. The executive summary presented here focuses on assessing and preventing mobility loss in older adults in the hospital and summarizes the recommendations from that white paper. The full version of the white paper is available as Text S1. J Am Geriatr Soc 67:11–16, 2019. [ABSTRACT FROM AUTHOR]

Background Aims Methods & Procedures Outcomes & Results Conclusions & Implications WHAT THIS PAPER ADDS What is already known on the subject What this paper adds to existing knowledge What are the potential or actual clinical implications of this work? A recent literature review identified that past research has described the impacts of dysphagia on quality of life; but there is limited research on these impacts from the perspective of people with dysphagia, their supporters and allied health professionals. Recent qualitative research has provided details about these perspectives, but researchers have also called for verification of these findings with a larger group of participants.To expand upon the findings of the prior qualitative research on the views of people with dysphagia, supporters of people with dysphagia, and allied health professionals on the impacts of dysphagia and texture‐modified food on quality of life.An online survey of adults with dysphagia (n = 30), supporters of people with dysphagia (n = 4) and allied health professionals (n = 18) was conducted between November 2021 and February 2022. Categorical questions were analysed descriptively and open‐ended questions were analysed for content categories of meaning.Participants with dysphagia reported that dysphagia and texture‐modified foods had a greater impact on their physical health than on their choice and control or social engagement. Supporters and allied health professionals viewed that dysphagia impacted the physical health and their choice and control of people with dysphagia. Across groups, participants considered that mealtime enjoyment, participation, and inclusion were influenced by the control the person had over their meals, the accessibility of the mealtime environment, and the attitudes of others.Dysphagia and its interventions negatively impact quality of life for people with dysphagia. People with dysphagia were the most affected by the physical impacts of dysphagia. Their perspectives contrasted with those of supporters and allied health professionals in some domains, highlighting the need for people with dysphagia to be included in research. Future research exploring how these perspectives are integrated into person‐centred dysphagia management is warranted. Recent qualitative research has provided insights into the impacts of dysphagia on quality of life from the perspective of people with dysphagia, supporters of people with dysphagia, and allied health professionals. However, the small scale of these studies means that further research is needed with a larger group of people with dysphagia, supporters of people with dysphagia, and allied health professionals. This paper verifies and extends upon the findings of prior qualitive research on the views of people with dysphagia, supporters of people with dysphagia, and allied health professionals on the impacts of dysphagia and its interventions on quality of life, participation, and inclusion. This research shows the importance of supporters of people with dysphagia and allied health professionals discussing mealtime quality of life with the person with dysphagia so that their perspectives are considered in the mealtime decision‐making process. Furthermore, people with dysphagia should be able to specify strategies they want to trial to enhance their mealtime participation and inclusion. [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 Methods Results Conclusion What this paper adds What is already known on the subject What this paper adds to existing knowledge What are the potential or actual clinical implications of this work? This study aimed to assess anxiety, depression and quality of life (QoL) in patients with head and neck cancer undergoing laryngectomy using comprehensive self‐reported questionnaires for a period of up to 5 years.This prospective observational study enrolled 150 consecutive patients with locally advanced head and neck cancer who underwent laryngectomy at Nagoya University Hospital between 2007 and 2020. Anxiety, depression and QoL were assessed at baseline (preoperative) and at 3, 6, 12, 24, 36, 48 and 60 months after surgery using two brief self‐reported questionnaires, such as the eight‐item Short Form Health Survey (SF‐8) and the Hospital Anxiety and Depression Scale (HADS).The surgical procedures were total laryngectomy, pharyngo‐laryngectomy and pharyngo‐laryngo‐oesophagectomy in 97 (65%), 41 (27%) and 12 (8%) patients, respectively. All eight items of the SF‐8 were significantly worse than those of the normal population at baseline and at 3 months after surgery. However, general health, vitality, mental health and bodily pain improved to normal levels within 1 year after surgery and were maintained for 5 years. In this study, 35% of patients were categorised as potential cases of depression, and 35% were potential cases of anxiety. During the follow‐up period, the proportion of patients with anxiety gradually decreased after surgery. Further analysis revealed that the SF‐8 and HADS scores and trends in 89 patients without tumour recurrence were similar to those in the total enrolled 150 patients.Anxiety, depression and QoL in laryngectomised patients improved at 1 year after surgery and were maintained for up to 5 years. Laryngectomy is associated with prolonged functional and psychological effects and has a major impact on patient quality of life (QoL). Several prospective studies evaluating the QoL in laryngectomised patients have been reported, in which significant deterioration in social functioning was found even 1 year after surgery. One year is not a sufficient period for laryngectomised patients to return to normal life and spend their time in a social community. A recent review showed that most studies on QoL in laryngectomised patients were conducted under 1 year after the procedure, and there were not enough studies of sufficient quality. This is the first long‐term prospective observational study of Japanese patients with head and neck cancer who underwent laryngectomy up to 5 years after surgery. Our long‐term observational study showed that the scores for anxiety, depression and QoL in laryngectomised patients improved at 1 year after surgery and were maintained for up to 5 years. Clinicians should recognize the importance of psychosocial risk factors in their QoL and multidisciplinary management, including social and psychological support, is essential for long‐term laryngectomised survivors. [ABSTRACT FROM AUTHOR]

Background Aims Methods Main Contribution Conclusions What this paper adds What is already known on this subject What this paper adds to existing knowledge What are the potential or actual clinical implications of this work? Primary progressive aphasia (PPA) is a neurodegenerative condition characterised by a prominent and progressive deterioration in language abilities, which significantly impacts quality of life and interpersonal relationships. Speech and language therapy plays a crucial role in offering interventions. Group intervention is one mode of delivery that could benefit communication functioning and overall wellbeing of people with PPA (pwPPA) and their care partners. Group interventions are also more efficient than one‐to‐one intervention and may facilitate peer support.The aim of this review was to systematically evaluate the current evidence for the effectiveness of speech and language therapy groups for pwPPA and their care partners. Specifically, this paper considered three questions: 1.What evidence‐based speech and language therapy groups for pwPPA and their care partners have been reported to date? 2.Are group communication interventions effective in improving quality of life and communication function for pwPPA and their care partners? 3.Are group communication interventions that are designed for people with communication difficulties of other aetiologies (such as stroke) effective for pwPPA? In addition, this review aimed to describe the structure and content of groups, including aims, disciplines involved, size and frequency of group meetings, and outcome measures.MEDLINE, CINAHL and PsycINFO were used to retrieve articles of interest. A total of 10 studies published between 2009 and 2022 met the eligibility criteria and therefore were included in this study. Data were extracted from the articles regarding the structure and content of groups.Although evidence is currently limited, results suggest that speech and language therapy group intervention can improve specific linguistic processes, the use of communication strategies and psychosocial well‐being. The importance of multidisciplinary input and care partners’ involvement in groups was highlighted, along with the benefits of creative non‐verbal activities as tools for self‐expression. There is also initial evidence that telehealth group provision and one‐off group sessions may be feasible and can benefit psychosocial well‐being. Lastly, intentional recruitment and explicit education on different aphasia types are described as important when pwPPA participate in groups with mixed diagnoses.The literature on speech and language therapy group interventions for PPA shows promise of positive effects on communication function and psychosocial well‐being of both pwPPA and their care partners. Speech and language therapists can consider these published interventions when designing and implementing similar groups, but more robust evidence is required to confirm the relative effectiveness of this approach. Speech pathology led group intervention shows some promise in benefitting communication functioning and overall well‐being of pwPPA and their carers, but there has been no systematic evaluation of all the evidence regarding the efficacy of speech and language therapy led groups. Establishing feasibility, acceptability and efficacy of speech and language therapy group interventions for pwPPA and their carers may present a valuable addition for managing this progressive language disability. Although evidence is currently limited, results from this systematic review suggest that speech and language therapy led group intervention can improve specific linguistic processes, the use of communication strategies and psychosocial well‐being for pwPPA and their carers. The importance of multidisciplinary input and carers’ involvement in groups was highlighted, along with the benefits of creative non‐verbal activities as tools for self‐expression. There is also initial evidence that telehealth group provision for carers may be feasible and can benefit psychosocial wellbeing. Lastly, intentional recruitment and explicit education on different aphasia types are described as important when pwPPA participate in groups with mixed diagnoses. A synthesis of the evidence base for speech and language therapy led PPA groups, as well as a description of the group components and formats, will be valuable for clinical service planning, and will guide future examination of group options for pwPPA and their carers. Speech and language therapists can also consider the research findings from this systematic review when designing and implementing similar groups in their local context. [ABSTRACT FROM AUTHOR]

The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient Oriented Outcomes, Melanoma and Non‐Melanoma Skin Cancer (NMSC) present a review of the literature and position statement on health‐related (HR) QoL assessment in skin cancer patients. A literature search was carried out to identify publications since 1980 that included information about the impact of SC on QoL. Generic, dermatology‐specific, cancer‐specific, SC‐specific, facial SC‐specific, NMSC‐specific, basal cell carcinoma‐specific and melanoma‐specific QoL questionnaires have been used to assess HRQoL in SC patients. HRQoL was assessed in the context of creation and validation of the HRQoL instruments, clinical trials, comparison of QoL in SC and other cancers, other diseases or controls, HRQoL assessment after treatment, comorbidities, behaviour modification, predictors of QoL and survival, supportive care needs, coping strategies and fear of cancer recurrence. The most widely used instruments for HRQoL assessment in SC patients are the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ‐C30), the Functional Assessment of Cancer Therapy‐Melanoma (FACT‐M), Skin Cancer Index (SCI), Short Form 36 Item Health Survey (SF‐36) and the Dermatology Life Quality Index (DLQI). The TFs recommend the use of the cancer‐specific EORTC QLQ‐C30, especially in late stages of disease, and the melanoma‐specific FACT‐M and SC‐specific SCI questionnaires. These instruments have been well validated and used in several studies. Other HRQoL instruments, also with good basic validation, are not currently recommended because the experience of their use is too limited. Dermatology‐specific HRQoL instruments can be used to assess the impact of skin‐related problems in SC. The TFs encourage further studies to validate HRQoL instruments for use in different stages of SC, in order to allow more detailed practical recommendations on HRQoL assessment in SC. [ABSTRACT FROM AUTHOR]

Background: Cognitive communication disorder (CCD) following traumatic brain injury (TBI) is well documented and these communication problems impede successful re‐integration into community living. While there is growing evidence for intervention to both detect and treat the impact of these deficits across the rehabilitation continuum, there are barriers to accessing services. Cognitive communication impairments may be missed because the person can talk, and this may mask the subtle but debilitating impact of a CCD. Referral to a speech and language therapist (SLT) may be overlooked or not timely, which prevents the individual accessing evidence‐based interventions. Inadequate treatment provision and an under‐ or overestimation of communication capability can potentially undermine the effectiveness of wider team assessment and intervention. Aims: To report stakeholder views on specialist SLT input for CCD within a multidisciplinary team intervention for a community‐dwelling individual with severe TBI. The investigation explored perspectives on understanding of CCD, on practice and on outcomes, in order to inform professional groups on perceived impacts of the evidence‐to‐practice gap. Methods and Procedures: A semi‐structured interview methodology was employed with 11 stakeholder participants involved in a single case. Data were evaluated using a thematic framework method. Themes were inductively derived from the stakeholder narratives. Outcomes: Stakeholders reported the following outcomes from specialist SLT input for CCD within a collaborative team approach: improved engagement with rehabilitation and support teams, improved health‐related quality of life and well‐being, and increased client participation in community activities of personal relevance. Stakeholders also reported inequities in wider service provision where limitations in professional understanding of CCD and knowledge of best practice recommendations preclude access to specialist SLT services. Conclusions: CCDs are under‐recognised and this can have a devastating effect on people with CCD and on those around them. Stakeholder reports provide evidence for the effectiveness of SLT practice recommendations for the treatment of CCD following TBI. They also provide additional evidence of persisting barriers to accessing treatment. Future research to explore ways to close this evidence‐to‐practice gap is required. What This Paper Adds: What is already known on this subject: Cognitive communication difficulties are a well‐documented consequence of TBI. There is evidence for the effectiveness of person‐centred interventions for CCD across the recovery continuum. International evidence‐based practice recommendations are in place for CCD assessment and management. Barriers to accessing SLT expertise for CCD have previously been reported. What this paper adds to existing knowledge: This investigation explores the views of a diverse group of stakeholders involved in a single case of a community‐dwelling individual with severe TBI. Stakeholders report positive real‐world outcomes from SLT interventions for CCD within a coordinated multidisciplinary rehabilitation team. Stakeholder reports also indicate inequities in wider service provision and CCD knowledge gaps amongst professional groups providing rehabilitation services for people with TBI. What are the potential or actual clinical implications of this work?: CCDs are under‐recognised, with devastating effect for people with CCD and those around them. These findings underscore the importance of raising professional awareness of CCD and best practice recommendations, in order to improve access to SLT expertise for people with CCD following TBI. [ABSTRACT FROM AUTHOR]

Background: Rehabilitation for cognitive‐communication impairments following brain injury can be complex given the heterogenous nature of impairments post injury. Project‐based intervention has the potential to improve communication skills and create a meaningful real‐life context where individuals collaborate to develop a concrete product, which benefits others. While evidence for this intervention is emerging, the COVID‐19 pandemic prompted increased use of telehealth interventions to serve people with brain injury. This paper aims to describe a framework for the delivery of project‐based intervention via telehealth within community rehabilitation settings; and present several case studies of telehealth groups completed in the United Kingdom and the United States during the COVID‐19 pandemic. Methods: A working group was formed to map the components of project‐based intervention onto the rehabilitation treatment specification system (RTSS). This system is a conceptual framework that helps to explain the link between treatment theory and ingredients, allowing a clinician to clearly understand how and why a treatment works. First, a literature search was completed to identify eligible studies on project‐based intervention after brain injury. Second, those studies were thematically mapped onto the RTSS to identify important intervention components. Third, the presence of these components was assessed for community brain injury groups delivered via telehealth in the United Kingdom and United States. These groups were further described using a taxonomy of social activities that help to describe the degree of meaningful social engagement. Results: The literature was described with a thematic RTSS summary. Treatment aims focus on skills training and self‐efficacy, advocacy and self‐empowerment, emotional well‐being and quality of life, and collaboration and community belonging. Treatment ingredients involve a range of cognitive and behavioural supports to deliver meaningful activities and contexts to complete a project. Mechanisms of action involve learning by doing and cognitive and affective information processing. All four telehealth groups conducted in the United Kingdom and United States involved at least three treatment aims, >7 targets, and >8 treatment ingredients. All groups reported positive experiences from activities that involve working collaboratively to help others and contribute to society. Conclusions: Project‐based intervention delivered via telehealth has the potential for supporting people with acquired brain injury to improve their communication skills and engage in meaningful, collaborative activity. Application of the RTSS helps clinicians to understand the aims and therapeutic ingredients (or clinician activities) through which a person with brain injury may achieve specific treatment targets during the rehabilitation process. What this paper adds: What is already known on the subject: Project‐based interventions have the potential to improve cognitive, self‐regulatory, behavioural and social communication skills, renegotiate identity and reaffirm sense of self, providing a positive impact on quality of life for persons with acquired brain injuries. Projects serve as a context for meaningful engagement for individuals in the chronic phase of traumatic brain injury recovery, without fulfilling work, family or social responsibilities. However, most published research has involved in‐person projects and few projects have been delivered via telehealth. What this paper adds to existing knowledge: While past published works have shared core principles of intervention, a variety of projects, durations, dosages and methods have been employed. The current paper provides a framework to support more consistent implementation. By mapping previous project‐based interventions to the RTSS, clinicians will have a better understanding of the aims, targets, ingredients and theoretical underpinnings of project‐based interventions. In the wake of the COVID‐19 pandemic, the shift to telehealth moved interventions to a virtual context. The four case projects in this paper demonstrate that it is possible to conduct project‐based interventions via telehealth and provides a clear description to guide clinicians in their delivery. What are the potential or actual clinical implications of this work?: This work begins to build the foundation for more rigorous, empirical examination of project‐based interventions. By mapping project‐based interventions to the RTSS, core aims, targets and ingredients are established that can be objectively examined. This investigation also provides a road map for clinicians who wish to implement this complex intervention. [ABSTRACT FROM AUTHOR]

Background: Impaired discourse production is commonly reported for individuals with traumatic brain injury (TBI). Discourse deficits can negatively impact community integration, return to employment and quality of life. COVID‐19 restrictions have reduced in‐person assessment services for people with communication impairments. Advances in telehealth may help speech and language therapists (SLTs) to assess monologic discourse more systematically and improve access to services for patients who may find it difficult to attend in‐person. Aims: To examine the feasibility of telehealth administration of narrative and procedural discourse tasks with individuals with TBI and matched controls. Methods & Procedures: A total of 20 individuals with TBI and 20 healthy controls, aged 18–55 years, were directly recruited from the UK and indirectly recruited from the US. For participants with TBI, time post‐injury was at least 3 months with no diagnosis of aphasia. Control participants were matched for sex and as closely as possible for age. Feasibility of measures was based upon the time to administer both narrative tasks, the report of any technological problems, and participant feed. Discourse samples were transcribed verbatim and analysed using story grammar analysis (for narrative discourse) and identification of propositions (for procedural discourse). Interrater reliability was calculated using percentage agreement for 50% of the data. Non‐parametric analyses were used to analyse the performance of the two groups. Outcomes & Results: Narrative and procedural discourse samples were collected via telehealth in approximately 10 min with no reported technical difficulties or complaints from any participants. For narrative discourse performance, there were significant differences for the TBI and control groups for measures of complete episodes (p < 0.001) and missing episodes (p = 0.005). No significant group differences were noted for any of the procedural discourse measures. Conclusions & Implications: Results support the feasibility of collecting discourse samples via telehealth. Although the participants' discourse performance distinguished the TBI and control groups on the narrative task, no differences between the groups were noted for the procedural task. The narrative discourse task may have been more difficult than the procedural task, or video cue support reduced the cognitive load of the procedural task. This finding suggests the use of more complex procedural tasks without video cue support may be needed. WHAT THIS PAPER ADDS: What is already known on this subject: Although little research has explored the feasibility of administering discourse assessments for individuals with TBI via telehealth, some studies have found that discourse interventions can be feasibly administered via telehealth. It is also well established that individuals with TBI struggle with the supra‐structural and macro‐linguistic elements of discourse production. Both procedural and narrative discourse tasks have been found to differentiate individuals with TBI from healthy controls. What this paper adds to existing knowledge: Few studies have investigated the feasibility of, and procedures for, administering discourse tasks via telehealth. Additionally, the inclusion of multiple types of discourse tasks to parse cognitive–communication abilities is lacking in the current literature. Findings from this study support that narrative and procedural discourse can be feasibly sampled via telehealth and that international collaboration for research on this topic can facilitate such studies. Individuals with TBI performed more poorly on three measures of narrative discourse. No differences between groups were identified for the procedural task. What are the potential or actual clinical implications of this work?: Telehealth assessment for discourse provides flexibility for both the individual with TBI and the speech–language therapist and does not compromise the quality of data collected. The administration of discourse tasks and collection of data was not time‐consuming and was well accepted by the study participants. Additionally, international research collaboration not only expands potential participation in research but increases the opportunity to recruit and study more diverse groups. [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]

As a registered psychotherapist and art therapist, my clinical training was primarily based on North American clinical approaches influenced by traditional Euro and western‐centric clinical theories of human behavior. I completed my training feeling certain that traditional clinical mental health practices were not an appropriate fit for racialized communities and could have negative implications for their healing and well‐being. As clinicians, it is our moral obligation to support and enhance the quality of life for marginalized groups. We can do this by challenging our values and knowledge that have been defined and influenced by structures (i.e., education, training, etc.) embedded in these colonial teachings. For this paper, I used a heuristic self‐inquiry research method to investigate these concerns. I interviewed other racialized psychotherapists practicing in Turtle Island (currently mostly occupied by the political entities of Canada and the United States) with the aim to learn how and if decolonization can be used in therapy practice. With this research, I (1) identified a gap in care for racialized communities, (2) questioned if or how a decolonizing approach to care should be considered, (3) explored my discomfort with practitioners in the field that claim their position on decolonizing therapy, practice, and approaches, and lastly (4) propose other ways of knowing that can inform new ways of practicing therapy. The results of this research helped to problematize the language and use of decolonizing therapeutic practices while learning about other concepts that may be relevant yet distinct, such as principles of coloniality/decoloniality. Those of us, therapists or researchers, wanting to disrupt the current practice of therapy need to work together, share knowledge, and challenge each other, so that we can transform the way we practice as psychotherapists. This paper is my contribution to this conversation. Highlights: I interviewed racialized psychotherapists to learn how and if decolonization can be used in therapy.Traditional psychology can lead to ineffective mental health care for racialized communities.I propose other ways of knowing that can inform new therapy practices for racialized communities. [ABSTRACT FROM AUTHOR]

The aim of this review is to revisit the meaning of common concepts and frameworks promoted to capture subjective outcomes of patients, the content of their corresponding measurements, and the preferred sources of the information of interest. This is important because conceptualizations of 'health' and the subject evaluations thereof continue to evolve. Related but distinct concepts like quality of life (QoL), health‐related QoL (HRQoL), functional status, health status, and well‐being are often used indiscriminately to assess clinical impacts of interventions and to influence decisions about patient care and policymaking. The discussion addresses and illustrates the following issues: (1) the required features of effective and valid health‐related concepts; (2) understanding underlying factors that often create confusion about QoL and HRQoL; and (3) how these concepts provide insight into, and promote, health in the context of populations with neurodisability. The hope is to illustrate how a combination of a clear research question, a hypothesis, conceptualization of the required outcomes, and operational definitions of the domains and items of interest, including item mapping, can help to achieve robust methodology and valid findings beyond the required psychometric properties. What this paper adds: The language, content, and the source of perceived health and life issues are clarified.Using the same terms for different constructs, or different terms for the same constructs, creates confusion and hinders outcome research.The challenges of using patient‐reported outcomes in neurodisability are addressed. What this paper adds: The language, content, and the source of perceived health and life issues are clarified.Using the same terms for different constructs, or different terms for the same constructs, creates confusion and hinders outcome research.The challenges of using patient‐reported outcomes in neurodisability are addressed. [ABSTRACT FROM AUTHOR]

This paper provides a general framework for conceptualizing triage for intensive care unit admissions in public health emergencies such as the COVID‐19 pandemic. It applies this framework to some of the guidelines issued during the pandemic and addresses some controversial issues, including the role of age, the use of lives or life years, and the relevance of quality of life considerations. The paper defends a view on which triage protocols for public health emergencies should aim to maximize the number of life years saved, may take into account age as a proxy, and should ignore quality of life considerations. [ABSTRACT FROM AUTHOR]

Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. Approach to Patient and Public Involvement (PPI): This paper reports on how PCs shaped the design and development of the PRIME‐UK research programme study materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research programme. The PRIME‐UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross‐sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. Findings: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public Contribution: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient‐facing documents used for studies within the PRIME‐UK research programme. In addition, PCs evaluated their involvement using impact logs and co‐authored this paper. [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]

Acne causes profound negative psychological and social effects on the quality of life (QoL) of patients. The European Dermatology Forum S3-Guideline for the Treatment of Acne recommended adopting a QoL measure as an integral part of acne management. Because of constantly growing interest in health-related QoL assessment in acne and because of the high impact of acne on patients’ lives, the European Academy of Dermatology and Venereology Task Force on QoL and Patient Oriented Outcomes and the Task Force on Acne, Rosacea and Hidradenitis Suppurativa have documented the QoL instruments that have been used in acne patients, with information on validation, purposes of their usage, description of common limitations and mistakes in their usage and overall recommendations. [ABSTRACT FROM AUTHOR]

The article discusses the commentary on a stimulus paper which discusses the medical practices that objectively question human life affected by intellectual and developmental disability (IDD). Topics include growth in offering commercially available blood tests to screen for genetic abnormalities in pregnant mothers in some countries, resulting in abortions; and exploring how the decision is taken to legally terminate premature babies with severe disabilities and life threatening conditions.

Introduction Methods Consumer and Community Involvement Results Conclusion Plain language summary The purpose of this study was to examine the feasibility of adapting and translating an evidence‐based occupational therapist‐delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner.This study took place in a not‐for‐profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one‐on‐one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach.This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration.Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia.Adapting a community‐based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale.Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence‐based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual. [ABSTRACT FROM AUTHOR]

Objectives: The aim of the present study was to follow the daily course of patients with olfactory dysfunction and healthy controls and to assess (i) how many times a day, (ii) at which time, and (iii) in which aspect of daily life participants are conscious about their sense of smell. Methods: In this longitudinal study, 49 patients with smell loss and 30 healthy participants were enrolled. Olfactory function was assessed using the Sniffin' Sticks. All participants received paper diaries designed for a 14-day period, featuring 12 rows representing 12 daily hours and six columns for various daily life aspects. They were instructed to mark their awareness of smell by indicating the relevant row and column in the diary. Following the return of the diaries, a second olfactory test was conducted within the patient group. Results: On average, patients were consciously aware of their sense of smell around 8 times daily, while healthy participants noted it about 6.5 times a day. Both groups primarily focused on their sense of smell during activities related to "eating," followed by considerations in "social life" and "personal hygiene." Interestingly, distinct patterns emerged: patients peaked in awareness at 8 a.m. and 7 p.m., whereas healthy individuals showed peaks at 6 a.m., 12 p.m., and 7 p.m. Despite regular diary use, we observed no improvement in patients' olfactory function or related quality of life. Conclusion: The olfactory diary is a valuable tool unveiling individual smell awareness patterns in patients with smell loss, aiding in counseling and patient management. [ABSTRACT FROM AUTHOR]

Health represents the dynamic balance of physical, mental, social, and existential well‐being in adapting to conditions of life and the environment. Health is essential for the quality of life (QoL) of all individuals, including those with intellectual disability (ID). People with ID experience health inequities and barriers to quality health care that must be addressed to foster the QoL of this population. This paper illustrates how poor health negatively impacts each of the eight domains of the QoL model proposed by Shalock and Verdugo (2002) (e.g., health conditions limit work performance, decreasing opportunities for personal development and self‐determination). Suggestions for healthcare practices and behaviors that would improve the quality of healthcare provided to people with ID, and thus their health and QoL, are offered (e.g., engaging people with ID in the medical conversation, talking to them in plain language and without jargon enhances the personal development, self‐determination, interpersonal relationships, and social inclusion domains of QoL). Finally, we suggest actions that people with ID and their families might implement to maximize their health and wellness (e.g., maintaining a healthy lifestyle, and using the health promotion resources provided by disability organizations). [ABSTRACT FROM AUTHOR]

Marsh and Scalas (2018) proposed a taxonomic structural equation modelling approach to test the individually importance weighted‐average models (IWAMs) in their article published in Structural Equation Modeling: A Multidisciplinary Journal 25: 137–158. As Marsh and Scalas (2018) pointed out, IWAMs could be found in many research areas, including self‐concept, job satisfaction and quality of life (QOL) research. Based on the findings of their proposed approach, Marsh and Scalas (2018) argued that importance weights do not make a difference. The purpose of this paper is to assess the applicability of the approach developed by Marsh and Scalas (2018) and their conclusion that importance weights do not make a difference in the area of QOL, specifically subjective well‐being, research. In the research area of QOL, IWAMs have been discussed often under the topic of domain importance weighting. Findings from an analysis of the Panel Study of Income Dynamics' Wellbeing and Daily Life Supplement data show that different domain importance weighting methods, based on different underlying (within‐domain vs between/across‐domain) perspectives, produced different results leading to different conclusions. Although the approach for testing IWAMs developed by Marsh and Scalas (2018) offered several methodological advances and strengths, its applicability to the evaluation of domain importance weighting in QOL studies is limited by its underlying (within‐domain) perspective, its assumption that domain importance can be accurately and precisely measured, and the possibility of the small effect size of domain importance. Marsh and Scalas' (2018) findings that importance weights do not make a difference should be interpreted with caution. [ABSTRACT FROM AUTHOR]

Introduction: Although there is a large proportion of people from culturally and linguistically diverse backgrounds within Australia, their rate of access to disability services is disproportionately low. This review aims to understand the service needs of people from culturally and linguistically diverse backgrounds with disability to facilitate engagement in meaningful occupations. Methods: Arksey and O'Malley's scoping review framework was employed. Ten databases were searched for Australian studies. A deductive content analysis framework was applied in the synthesis. Results: Fourteen papers were included. Themes that emerged include language and cultural needs and considerations, which highlights the need for information sharing to take account of intergenerational, intercultural and sociolinguistic differences. It also identified the need for improved training and skills of existing interpreters. Culturally competent and responsive services was another theme identified, which emphasised the need to enhance the workforces' understanding of cultural practices. There is also a strong call for a more culturally diverse workforce to reduce the use of some interpreters and to build a more culturally competent workforce. The last theme was responsive service delivery, which requires the governance to support the development of a nurturing trusting therapeutic relationship. Conclusions: Service providers should be trained on the inequities and intersectionality of this population. Further research is required to explore current disability policy in Australia with an intersectionality lens to ensure recommendations can be made to address barriers and ensure this population receives services in a manner that enhances their ability to engage in occupations meaningfully. [ABSTRACT FROM AUTHOR]

Nutrition has played a central role in the management and outcomes of people with cystic fibrosis (pwCF) since the 1970s. Advances in therapies and practices in recent decades have led to a significant change in the patient landscape with dramatic improvements in life expectancy, as well as quality of life, bringing with it new issues. Historically, cystic fibrosis was a condition associated with childhood and malnutrition; however, changes in patient demographics, nutritional assessment and fundamental nutritional management have evolved, and it has become an increasingly prevalent adult disease with new nutritional challenges, including obesity. This paper aims to describe these changes and the impact and challenges they bring for those working in this field. Nutritional professionals will need to evolve, adapt and remain agile to the wider range of situations and support required for a new generation of pwCF. Specialised nutrition support will continue to be required, and it will be additionally important to improve and optimise quality of life and long‐term health. Key points: Traditional cystic fibrosis dietary advice focused on a default high‐fat/high‐calorie intake with limited consideration for other important nutrients. The emerging new era approach should be individualised, flexible and with an emphasis on diversity and longevity.Historically, this population was predominantly undernourished or at risk of undernutrition, but with the success and impact of nutritional guidelines, multidisciplinary teams, screening and new therapies, overnutrition is becoming an increasing concern that requires attention.Significant improvements in life expectancy mean more people with cystic fibrosis are living into old age, bringing with it age‐related complications and new opportunities that require nutritional consideration from childhood. [ABSTRACT FROM AUTHOR]

Introduction: The Patient Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a patient‐reported outcome tool that assesses quality of life and disease burden in people with haemophilia (PWH). Aim: To assesses the test–retest reliability of PROBE when completed using the mobile phone application. Methods: We recruited PWH, including carriers, and individuals with no bleeding disorders who attended haemophilia‐related workshops or via social media. Participants completed PROBE three times (twice on the app: T1 and T2, and once on the web, T3). Test–retest reliability was analysed for T1 versus T2 (app to app, time period one) and T2 versus T3 (app to web, time period two). Results: We enrolled 48 participants (median age = 56 [range 27–78] years). Eighteen participants (37.5%) were PWH and seven (14.6%) were carriers. On general health domain questions, we found almost perfect agreement, except for a question on the frequency of use of pain medication in the last 12 months [Kappa coefficient (κ).72 and.37 for time period one and two, respectively] and any use of pain medications (κ.75) for time period two. For haemophilia‐related questions, we found substantial to perfect agreement, except for the questions on the number of joint bleeds in the previous 6 months for time period one (κ.49) and the number of bleeds in the previous two weeks for time period two (κ.34). Conclusions: The results demonstrate the reliability of the PROBE app. The app can be used interchangeably with the paper and web platforms for PROBE administration. [ABSTRACT FROM AUTHOR]

Background: Above cuff vocalisation (ACV) involves the application of an external flow of air via the subglottic port of a tracheostomy. ACV can facilitate vocalisation and may improve swallowing and quality of life for patients with a tracheostomy. A recent systematic review highlighted the limited evidence available for the acceptability, effectiveness, safety or optimal implementation of ACV. Aims: To explore the experience of healthcare professionals (HCPs) using ACV and their perceptions of best practice. Methods and Procedures: Semi‐structured interviews were conducted with a range of HCPs with experience using ACV. Topics included: experiences with ACV, management of ACV, opinions about ACV, impact of COVID‐19, future directions for ACV and impact on length of stay. Interviews were conducted online from December 2020 to March 2022. Data were analysed using reflexive thematic analysis. Outcomes and Results: Twenty‐four HCPs were interviewed from seven countries and five professional groups. Four interconnected themes were developed: (1) moral distress amplifying the need to fix patients; (2) subjectivity and uncertainty leading to variations in practice and purpose; (3) knowledge and experience leading to control and caution; and (4) worth a try or a last resort. Theme four contained three sub‐themes: (a) part of the toolbox; (b) useful but limited tool; and (c) following the patient's lead. The moral distress experienced by HCPs and their essential 'need to fix' patients seems to underpin the varied opinions of ACV. These opinions appear to be formed primarily on the basis of experience, because of the underlying subjectivities and uncertainties. As knowledge and experience with ACV increased, and adverse events were experienced, most HCPs became more cautious in their approach to ACV. Conclusions and Implications: More research is needed to reduce the subjectivities and uncertainties surrounding ACV. The implementation of standardised procedures, processes, and competencies may help to reduce the frequency of adverse events and support a more controlled approach. Widening the focus of the purpose of ACV to include swallowing may help to maximise the potential benefits. WHAT THIS PAPER ADDS: What is already known on the subject: There is limited and low‐quality evidence for above cuff vocalisation (ACV) and clinical application and practice varies substantially. However, the reasons for this variation in practice and healthcare professionals' (HCPs') opinions of ACV were unclear. What this study adds: HCPs' experiences and opinions of ACV vary as a result of the uncertainty and subjectivity surrounding ACV compounded by their personal experiences with it. A need for caution also appears to emerge as HCPs become more familiar and experienced with using ACV. What are the clinical implications of this work?: Implementing standardised procedures, safety processes and competencies may help to compensate for the uncertainty and subjectivity surrounding ACV and may reduce the frequency of adverse events. Widening the focus of purpose of ACV, including swallowing in addition to communication, may increase the number of potential candidates and increase the potential benefits of ACV. Using multidisciplinary team (MDT) simulation training for ACV competency development might help to improve MDT working and ACV implementation. [ABSTRACT FROM AUTHOR]

Aim: Given the multifaceted nature of paediatric palliative care (PPC), integrative medicine and mind–body therapies, in particular, are increasingly used in this setting. However, to our knowledge, their use in PPC has never been specifically reviewed. Therefore, this work aims to provide a comprehensive overview of the application and possible beneficial effects of mind–body therapies in the PPC setting. Methods: Papers about the use of meditation and mindfulness, biofeedback, hypnosis, yoga, tai chi and qi gong, imagery, creative outlets, and art therapy in PPC were identified by browsing PubMed and CINHAL. Results: We found that the harmless nature of mind–body therapies has been extensively described, and available studies consistently show some benefits on the anxiety, stress, and quality of life of parents/caregivers and healthcare providers. However, well‐grounded and robust evidence does not fully support the efficacy of mind–body therapies, especially in patients. Conclusion: Considering the peculiarity of the PPC setting, we suggest that mind–body therapies should be further considered and properly investigated through larger controlled studies and according to the different populations of PPC children, as well as for parents, caregivers, and healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [ABSTRACT FROM AUTHOR]

A growing evidence base has demonstrated the value of Forest School as an outdoor learning approach which supports a range of benefits including improved physical, social and mental wellbeing, increased confidence and self‐esteem and the development of problem‐solving skills. However, critics of Forest School have argued that a lack of theoretical coherence and detail risks the misinterpretation of Forest School and its pedagogy by both practitioners and researchers. This paper responds to these concerns, establishing a comprehensive and detailed theoretical framework for Forest School. Through a thorough examination of evidence supporting Forest School delivery, we examine the theoretical keystones of this pedagogical approach to inform an interdisciplinary theoretical understanding of Forest School. We argue that Forest School is a particular socially constructed approach to outdoor education, which is informed by social constructivist experiential learning theory. This is driven by two core components. First, play‐pedagogy, which includes the opportunity to experience risk and be creative. Next, biophilic interaction, which examines the human innate desire to be in nature. This is informed by the cultural origins of Forest School development as underpinned by Nordic notions of friluftsliv and by theories of place attachment. Taken together, this theoretical framework considers the breadth of knowledge that underpins Forest School and recognises its growing evidence base, which positions it as a rich and valuable pedagogical approach. [ABSTRACT FROM AUTHOR]

Introduction: Spinal cord stimulation (SCS) is a well‐established treatment option for chronic pain. Pain over the implantable pulse generator, or pocket pain, is an incompletely understood risk of SCS implantation which may limit the efficacy of treatment and patient quality of life. The goal of this narrative review is to analyze the literature to gain a more thorough understanding of the incidence and risk factors for the development of pocket pain to help guide treatment options and minimize its occurrence in the future. Methods: A literature review was conducted investigating the development of pocket pain in patients with SCS for the management of a variety of pain conditions. Results: In total, 305 articles were included in the original database search and 50 met the criteria for inclusion. The highest level of evidence for papers that specifically investigated pocket pain was level III. Four retrospective, observational analyses included pocket pain as a primary outcome. The remainder of the included studies listed pocket pain as an adverse event of SCS implantation. Conclusions: There is a relative dearth of primary literature that examines the incidence, characteristics, and health economic implications of pocket pain in patients with SCS. This highlights the need for large‐scale, high‐quality prospective or randomized controlled trials examining pocket pain. This may ultimately help prevent and reduce pocket pain leading to improved efficacy of treatment and greater patient quality of life. [ABSTRACT FROM AUTHOR]

Background: A person‐centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. Objective: To develop a position paper that promotes a person‐centred approach in guideline development and implementation. Design, setting and participants: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G‐I‐N conference. We analysed the data for relevant themes to draft recommendations. Results: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person‐centred approach in clinical guidelines emerged: (i) use a joint definition of health‐related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision‐making method, and (iv) incorporate patient‐reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. Conclusion: This position paper describes essential elements for incorporating a person‐centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person‐centred care. [ABSTRACT FROM AUTHOR]

Background: Medication‐overuse headache (MOH) is one of the most common chronic headache disorders and represents a public health problem. Aim: As we have encountered cases of MOH treated effectively using yokukansan, we planned to analyze the effects of yokukansan on MOH in patients with migraine. Methods: To analyze the effects of yokukansan on MOH in patients with migraine, we planned the study using a double‐blind, randomized, and placebo‐controlled trial. Results: We started to register patients from October 2015, enrolling eight patients in 2015, 35 patients in 2016, 19 patients in 2017, and nine patients as of the time of writing in 2018. We have now collected 71 cases, but recruitment to the trial has not been completed. We need to register more cases to reach the desired number of 80. Conclusion: This article presents the protocol for a double‐blind, randomized, and placebo‐controlled trial to collect evidence of the effects of yokukansan on MOH. The final objective of this study is to reduce headache in MOH while maintaining patient quality of life in good condition. [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]

In the last two decades, genital transplants have emerged as another type of quality‐of‐life transplants. Successful allogenic transplantations of the uterus, ovary, testicle, and penis have all been reported. Yet, there is no discussion of clitoris transplantation in the medical literature, mass media, and everywhere else I searched. This surgery could be used for cisgender women who have a clitoral injury or disease or who have undergone female genital cutting. I examine the gender norms regarding sexuality and reproduction to show how they shape surgical advancements. My point in this paper is not to take a normative position on status of current genital transplantations. Rather, I highlight that their existence is due, at least in part, because they align with dominant gender norms: penis and testicle transplantations reinforce the importance of men's virility and the existence of "normal" male genitalia, whereas uterus and ovary transplantations uphold the conflation of women and reproduction and the strong valuing of women's fertility. That medical advances reflect cultural values is not a new claim. What is new in this paper is the discussion of how sexism norms—regarding the invisibility of the clitoris and the devaluing of women's sexual pleasure— has engendered various types of genital transplants, but not clitoris transplantation. [ABSTRACT FROM AUTHOR]

Objective The Cambridge Otology Quality of Life Questionnaire ( COQOL) is a patient-recorded outcome measurement ( PROM) designed to quantify the quality of life of patients attending otology clinics. Design Item-reduction model. A systematically designed long-form version (74 items) was tested with patient focus groups before being presented to adult otology patients (n. 137). Preliminary item analysis tested reliability, reducing the COQOL to 24 questions. This was then presented in conjunction with the SF-36 ( V1) questionnaire to a total of 203 patients. Subsequently, these were re-presented at T + 3 months, and patients recorded whether they felt their condition had improved, deteriorated or remained the same. Non-responders were contacted by post. A correlation between COQOL scores and patient perception of change was examined to analyse content validity. Setting Teaching hospital and university psychology department. Participants Adult patients attending otology clinics with a wide range of otological conditions. Main outcome measurements Item reliability measured by item-total correlation, internal consistency and test-retest reliability. Validity measured by correlation between COQOL scores and patient-reported symptom change. Results Reliability: the COQOL showed excellent internal consistency at both initial presentation ( α = 0.90) and 3 months later ( α = 0.93). Validity: One-way analysis of variance showed a significant difference between groups reporting change and those reporting no change in quality of life ( F(2, 80) = 5.866, P < 0.01). Conclusions The COQOL is the first otology-specific PROM. Initial studies demonstrate excellent reliability and encouraging preliminary criterion validity: further studies will allow a deeper validation of the instrument. [ABSTRACT FROM AUTHOR]

Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers.Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings.Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia. [ABSTRACT FROM AUTHOR]

This paper presents an account of how children's sense of agency is produced in machinic assemblages. The ethnographic data used in this study originated in one elementary school classroom. By utilising children's own expressions of their agency and by examining the machinic assemblages in which these expressions were produced, we demonstrate that school policies are not merely a background for schools' mundane practices. Rather, when combined with other elements in a school setting, policies have heterogeneous consequences for children's sense of agency. [ABSTRACT FROM AUTHOR]

Background: The Communicative Participation Item Bank (CPIB) is a patient‐reported outcome measure (PROM) designed to measure the extent of interference, or difficulty, experienced by adults with communication disorders participating in their day‐to‐day communication activities. To date, there is limited evidence regarding sensitivity of the CPIB for capturing change with intervention in people with Parkinson's disease (PwPD). Aims: The purpose of this study was to examine the following measurement properties of the CPIB in PwPD who received community‐based, standard care, speech‐language therapy focusing on motor speech concerns: Change over time between treatment and observation groups, comparison to patient‐defined ideal and satisfactory targets, comparison of static short form to computerised adaptive testing (CAT), comparison of self to proxy‐rated scores, and comparison to other common PROMs. Methods and Procedures: Forty‐six PwPD (20 treatment/26 observation) completed data collection upon enrolment (pre‐treatment) and 6 months later. In addition to the CPIB, PROMs included the Voice Handicap Index 10‐item short form (VHI‐10), PROMIS Global Health‐Related Quality of Life, Levels of Speech Usage, self‐rated speech severity, and Patient Health Questionnaire‐9 (PHQ‐9). Participants also engaged in qualitative interviews. Forty‐four family members completed proxy CPIB ratings. Outcomes and Results: There were no significant differences between treatment and observation groups on the CPIB pre‐treatment, but there were significant differences post‐treatment. The differences appeared to be largely due to significant gains in the treatment group. No participants reached their ideal CPIB target, and few reached their satisfactory target. Static CPIB short form and CAT scores were not significantly different, with an average of five CAT items administered per participant. Overall group similarities between patient and proxy scores may have obscured wide variability across individual patient‐proxy pairs. Associations between CPIB and VHI‐10, health‐related quality of life, self‐reported speech severity, and depression ranged from weak to moderate. Conclusions and Implications: The CPIB appears to be sensitive to capturing change with intervention, and similar results are obtained with the static short form and CAT formats. One clinical caution is that even with gains observed in the treatment group, no participants obtained their ideal communicative participation goals, and few obtained a satisfactory level of communicative participation. Thus, while current interventions are beneficial, they may not meet the full range of clients' communication needs. While responding to the CPIB through a proxy rater may be feasible, caution is warranted due to concerns about maintaining the autonomy of PwPD. What this paper adds: What is already known on this subject: The communication disorders associated with Parkinson's disease (PD) can have a negative impact on quality of life and life participation as measured by patient (or person)‐reported outcome measures (PROMs). The Communicative Participation Item Bank (CPIB) is one PROM available to use with adults with communication disorders. However, little is known about whether the CPIB captures changes in communicative participation as a result of standard care treatment for people with Parkinson's disease (PwPD). Use of computerised adaptive testing (CAT), proxy report and comparison to targeted participation outcomes have not been explored. What this study adds to existing knowledge: As a result of this study, we know that the CPIB captured differences between treatment and observation groups after community‐based, standard care speech therapy intervention focusing on motor speech production in PwPD. Static short form and CAT scores did not differ significantly, so the CAT option provides better efficiency requiring, on average, five items to administer compared to the 10‐item short form. Proxy and PwPD scores did not differ as a group, but wide variability was noted. What are the potential or actual clinical implications of this work?: The CPIB may be a clinically sensitive instrument for capturing changes in communicative participation after treatment. No participants met their ideal CPIB target, and few reached their satisfactory target, suggesting that while current interventions contribute to gains in communicative participation, there are still unmet needs that may call for support and interventions addressing the more complex array of factors affecting communicative participation outcomes for PwPD. [ABSTRACT FROM AUTHOR]

This study aims to provide an overview of the service system view (SSV), and the current status of its adoption for the development and implementation of assistive technology (AT). The role of ATs in the global aging scenario is anticipated; however, their diffusion is cumbersome. The SSV captures stakeholders, technologies, and their interactions as integrated systems. Based on this perspective, several approaches for designing long‐term care services have been proposed that would be helpful for the successful implementation of ATs. However, the existing geriatrics and gerontology literature seldom addresses these topics. Based on a literature review, this study first illustrates the challenges of using ATs in the real world. The existing literature highlights the sociotechnical challenges of utilizing ATs, such as the changes required in care work and resistance to them. To overcome the challenges, three approaches associated with the SSV have been introduced: service design, service engineering and living labs. This paper also introduces recent national projects in Japan that have adopted these approaches. As the importance of the SSV is growing for the successful implementation of ATs, the ability to adopt the SSV and its approaches is anticipated. In relation to geriatrics and gerontology studies, the impact on older adults' quality of life, as well as the economic effect, needs to be analyzed in future research. Geriatr Gerontol Int 2024; 24: 74–80. [ABSTRACT FROM AUTHOR]

In this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best. [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]

Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]

Aim: To explore the relationship between social care‐related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation. Method: As part of a larger pre‐post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables. Results: Seventy‐two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an 'ideal state' to 'high needs state'. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = −0.414, p < 0.000) and emotional representations of illness (r[70] = −0.503, p < 0.000), but not coherence (r = −0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127). Interpretation: Future research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL. What this paper adds: Caregiver social care‐related quality of life (SCrQoL) varied widely, from 'ideal state' to 'high needs state'.Most common high needs were doing enjoyable activities and self‐care.Caregivers with higher SCrQoL may perceive their child's illness as less threatening.SCrQoL does not appear to be related to caregiver activation in this sample. [ABSTRACT FROM AUTHOR]

The anti‐natalist philosopher David Benatar defends a position asserting that all life is harmful, and that it is, therefore, wrong to have children. In this paper, I critique Benatar's less‐discussed claim that his anti‐natalism provides solutions to population ethics problems, such as the Non‐Identity Problem, the Repugnant Conclusion, and the Mere Addition Problem, all of which are presented in Derek Parfit's Reasons and Persons. Since the publication of his Better Never to Have Been, Benatar has continued to claim that its provision of such solutions strengthens his defense of anti‐natalism. Although Benatar's view has received much criticism, this argument has not been discussed at length. I undertake a thorough examination of the argument and identify reasons to reject it. The central point of my critique is that the implications of Benatar's views in determining ranges of wrong and not‐wrong cases of procreation are extensionally inadequate when applied to the problems of population ethics. [ABSTRACT FROM AUTHOR]