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Aim: Position paper on endpoints of active periodontal therapy for designing treatment guidelines. The question was as follows: How are, for an individual patient, commonly applied periodontal probing measures—recorded after active periodontal therapy—related to (a) stability of clinical attachment level, (b) tooth survival, (c) need for re‐treatment or (d) oral health‐related quality of life. Methods: A literature search was conducted in Ovid MEDLINE(R) and Epub Ahead of Print, In‐Process & Other Non‐Indexed Citations and Daily <1946 to 07 June 2019>. Results: A total of 94 papers were retrieved. From the literature search, it was found that periodontitis patients with a low proportion of deep residual pockets after active periodontal therapy are more likely to have stability of clinical attachment level over a follow‐up time of ≥1 year. Other supporting literature confirms this finding and additionally reports, at the patient level, that probing pocket depths ≥6 mm and bleeding on probing scores ≥30% are risks for tooth loss. There is lack of evidence that periodontal probing measures after completion of active periodontal treatment are tangible to the patient. Conclusions: Based on literature and biological plausibility, it is reasonable to state that periodontitis patients with a low proportion of residual periodontal pockets and little inflammation are more likely to have stability of clinical attachment levels and less tooth loss over time. Guidelines for periodontal therapy should take into consideration (a) long‐term tangible patient outcomes, (b) that shallow pockets (≤4 mm) without bleeding on probing in patients with <30% bleeding sites are the best guarantee for the patient for stability of his/her periodontal attachment, (c) patient heterogeneity and patient changes in immune response over time, and (d) that treatment strategies include lifestyle changes of the patient. Long‐term large population‐based and practice‐based studies on the efficacy of periodontal therapies including both clinical and patient‐reported outcomes (PROs) need to be initiated, which include the understanding that periodontitis is a complex disease with variation of inflammatory responses due to environment, (epi)genetics, lifestyle and ageing. Involving people living with periodontitis as co‐researchers in the design of these studies would also help to improve their relevance. [ABSTRACT FROM AUTHOR]

Objectives: While common in the elderly, dry mouth can negatively affect their oral health and nutritional status. Self‐administered oral care by the elderly can improve their oral health and prevent oral diseases. This study aimed to identify the content of oral health promotion programmes for community‐dwelling elderly and to determine which programmes are effective in improving oral health decreasing xerostomia in these populations. Methods: A systematic literature search and meta‐analysis was conducted using the PRISMA guidelines. All available papers published in English or Korean were searched between 1 June and 13 June 2018. The relevant databases in PubMed Central, MEDLINE, CINAHL, the Cochrane Library and Embase, as well as open dissertation and academic searches, were performed. Data were extracted from the selected studies based on PICOS, and the health outcomes of the elderly were subjected to meta‐analysis categorized by salivary secretion rates and oral health‐related quality of life (OHQoL). Results: A total of nine studies had sufficient data for a systematic review and meta‐analysis. The intervention programmes consisted mainly of oral health promotion programmes, mouth exercises, toothbrushing and salivary massage. The meta‐analysis indicated that elderly participating in oral health programmes had significantly increased oral salivary secretion rates and OHQoL (effect sizes of 0.63 and 0.80, respectively). Conclusions: Oral health promotion programmes in the elderly provide the positive effects of relieving dry mouth and improving OHQoL. This systematic review confirmed the contents and effects of the oral health promotion programmes provided to community‐dwelling elderly. [ABSTRACT FROM AUTHOR]

The author focuses on papers related to the positive aspects of mental health and papers related to factors that prevent well-being in older people excluding dementia. Topics discussed include a report by E. Learmonth and colleagues which explored how experiences of community benefit emotional well-being and a study by J. Byles and colleagues which investigated health-related quality of life in older women from urban, rural and remove environments.

Background: Intervention studies aimed to improve the written production of single words by persons with aphasia have yielded promising results and there is growing interest in interventions targeting text writing. The development of technical writing aids offers opportunities for persons with aphasia, and studies have shown that using them can have a positive impact on written output. Aims: The aim was to investigate what impact training to use a computerised spell checker had on text writing in persons with aphasia. Methods & Procedures: The study had a multiple‐baseline single‐case experimental design replicated across six male Swedish participants with mild‐to‐moderate post‐stroke aphasia. The participants received training twice a week during 8 weeks, learning how to use the spell checker. At baseline and before every session, the participants wrote two texts which were logged in a keystroke‐logging tool. Dependent variables were continuously measured in the texts, and the participants performed tests of language function and answered questionnaires on reading and writing habits and health‐related quality of life before and after the intervention. The participants were also interviewed about how they had experienced the training. The results were evaluated on individual and group level. Results: The study showed that systematic individual training involving a spell checker was experienced as positive by the participants and that they all described their writing ability in more positive terms after the intervention. Evaluation showed statistically significant improvements on group level for the dependent variables of spelling accuracy, rated syntax, writing speed and proportion of unedited text during text writing when using the spell checker. The intervention also had a generalising effect on writing speed and editing during text writing without the spell checker and on spelling accuracy in a dictation test. The participants who had the greatest spelling problems were the ones who showed the most progress, but participants with only minor writing difficulties at baseline also improved. Conclusions & Implications: The study shows that a digital spelling aid constitutes effective support for people with aphasia and may also affect levels other than spelling. The training had a generalising positive effect on text writing and spelling in a test. Although writing difficulties is a persisting symptom in aphasia, it can be supported and improved through use of digital spelling aids. Hence, treatment of writing ability should always be included in the rehabilitation of people with aphasia. WHAT THIS PAPER ADDS: What is already known on this subject: Use of a technical writing aid can have a positive impact on the written output of persons with aphasia. Using a digital spell checker may improve spelling as well as other levels of writing, but it has not been investigated using a keystroke‐logging tool in combination with language‐test scores and results from questionnaires. What this paper adds to existing knowledge: Through analyses on both individual and group level, this study shows that a digital spelling aid constitutes effective support for people with aphasia and also affects levels other than spelling. The training had a generalising positive effect on text writing and spelling in a test. What are the potential or actual clinical implications of this work?: Digital spelling support, which is a relatively simple and inexpensive technology, can support and improve text writing in persons with post‐stroke aphasia. [ABSTRACT FROM AUTHOR]

Core outcome sets (COSs) are an agreed standardized collection of outcomes that should be measured and reported in all clinical trials for a specific clinical condition. Tsekhe aim of our position paper by the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life and Patient Oriented Outcomes was to identify the challenges and Patient Oriented Outcomes advantages in the development of COSs within dermatological QoL research. Twelve EADV Task Force multidisciplinary team members presented a total of 101 items (51 advantages and 50 disadvantages). All participants considered that COS are beneficial for comparison between different studies, treatments, dermatological diseases, geographical location and ethnicities. In conclusion, the EADV Task Force on Quality of Life and Patient Oriented Outcomes has recognized the primacy of advantages of COS and deliberated that the disadvantages in COS are related to development process and use of COS. [ABSTRACT FROM AUTHOR]

Background: Debilitating speech and communication changes in Parkinson's disease (PD) lead to diminished quality of life for people with PD and their communication partners. Maintenance of the long‐term effects of treatment such as LSVT LOUD® remains equivocal. Development of supported long‐term maintenance programs is warranted. Aims: This article describes the development and preliminary outcome data for PD Check‐In, a supported self‐management intervention for the maintenance of speech and social communication for people with PD following LSVT LOUD. Methods & Procedures: A narrative literature review of the principles of self‐management and social cognitive theory of self‐regulation was conducted to develop the core elements of PD Check‐In. PD Check‐In was conducted in person by a speech and language therapist (SLT) for three participants at 6 and 12 weeks, and at 6, 12 and 24 months following LSVT LOUD. Outcome measures included vocal intensity (SPL) during monologue and the dysarthria impact profile (DIP). PD Check‐In utilized semi‐structured discussion to develop, evaluate, and support the self‐efficacy and skill of the person with PD in maintaining speech and social communication. Outcomes & Results: Six conceptual elements of PD Check‐In were identified in the development phase: partnerships, self‐reflection, maintenance issues, revision, goal‐setting and maintenance strategies. Preliminary intervention data revealed monologue vocal intensity at 24 months post‐LSVT LOUD was maintained above pre‐treatment level, but below levels achieved post‐treatment. The psychosocial impact of speech changes from pre‐LSVT LOUD to 24 months post‐treatment as measured by the DIP was variable. Qualitative statements reflected participant experiences underlying the clinical data. Conclusions & Implications: The theoretical and practical underpinnings of PD Check‐In were defined. The impact of PD Check‐In on three persons with PD was variable but positive. Further evaluation of the model is warranted. What this paper adds: What is already known on the subject: LSVT LOUD provides efficacious treatment for the speech disorder associated with PD. Long‐term maintenance of speech post‐treatment varies following self‐managed and group therapy interventions. People with PD have an unmet expectation of long‐term maintenance of speech and improved quality of life following intensive treatment. What this paper adds to existing knowledge: This study describes the development of a novel clinic‐based approach to long‐term maintenance of speech in PD based on the principles of self‐management and self‐efficacy. It provides preliminary data to demonstrate the method and its effects on three participants with varying speech difficulty, self‐management skill development and psychosocial impact. What are the potential or actual clinical implications of this work?: The positive impact of PD Check‐In on the maintenance of monologue vocal intensity above baseline 24 months post‐intensive treatment was independent of the variable impact on the quality of life of the participants. Further exploration of PD Check‐In is warranted to determine the efficacy of this approach. [ABSTRACT FROM AUTHOR]

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]

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]

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]

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]

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]

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: 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]

Situated in the intersection of the literature on QoL and lifestyle migration, this paper contributes to the discussion of three subjective components of QoL after migrating to another country. These are hedonic (happiness), evaluative (life satisfaction) and eudaimonic (having a purposeful or worthwhile life). Based on 36 in‐depth interviews to Swedish citizens permanently living in Portugal, a group understudied in the lifestyle migration framework, three groups of individuals were identified according to the drivers of migration. Following a life‐course approach, the research question exploring in what way has the QoL changed (or not) after migrating to Portugal is responded. Swedes compare different issues premigrating and postmigrating, cutting across the drivers that brought them to Portugal. The findings suggest differences in happiness, life satisfaction and purposefulness differ according to one's relative economic comfort, standards established for oneself moral principles on how to live, and identity making projects. Despite the challenges that remain, the perceived QoL has generally increased after settling in Portugal comparatively to what it was in their home country, especially in the evaluative and eudaimonic components. [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]

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]

A significant proportion of somatic symptoms remain, at present, medically unexplained. These symptoms are common, can affect any part of the body, and can result in a wide range of outcomes-from a minor, transient inconvenience to severe, chronic disability-but medical testing reveals no observable pathology. This paper explores two first-person accounts of so-called 'medically unexplained' illness: one that is published in a memoir, and the other produced during a semi-structured interview. Both texts are revelatory for their expression of shame in the context of encountering disrespect from healthcare professionals. The first section of my paper, clinical encounters, explores disrespect which, I argue, takes three interconnecting forms in these texts: disrespect for pain when it is seen as 'medically unexplained', disrespect for the patient's account of her own pain, and disrespect for the patient herself. The second section elucidates the shame that occurs as an affective and embodied consequence of encountering such disrespect. I claim that patients living with so-called 'medically unexplained' illnesses suffer a double burden. They endure both somatic and social suffering-not only their symptoms, but also disrespectful, traumatic and shame-inducing experiences of healthcare systems. I conclude with a reflection on the urgent need for changes in clinical training that could improve the quality of life for these patients, even in the absence of an explanation, treatment or cure for their symptoms., (© 2022 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Background: Adults and children who are enterally tube‐fed can experience adverse gastrointestinal symptoms (GIS). Observational data suggests that blended diets (BD) could mitigate such symptoms, with potential to improve quality of life and clinical outcomes. We present a novel systematic review examining the impact of BD, compared to commercial feeds, on GIS of adults and children who are tube‐fed. Methods: The protocol was registered with PROSPERO (CRD42021261147). Four electronic databases were searched from inception to August 2021. Search terms included 'tube‐fed', 'blended diet' and 'formula'. Inclusion criteria were intervention studies comparing blended and commercial feeds using quantitative measures of GIS. Heterogeneity of outcome measures precluded meta‐analysis; therefore, a narrative synthesis was conducted. Results: Six papers (n = 219), including two randomised control trials (RCT) and four single arm pre–post studies, were identified. Equal numbers studied in‐ and out‐patients, adults and children. Risk of bias was notable for all studies. Equivocal and insufficient evidence prevented consensus on outcomes of vomiting, gagging, oral intake, bloating and constipation. However, one RCT and two single arm pre–post studies suggest that diarrhoea symptoms may be improved on BD. Conclusions: Diarrhoea is prevalent in tube‐fed populations and associated with adverse outcomes. Improvements in diarrhoea symptoms attributed to BD may be clinically important. Our findings are congruous with the wider observational evidence base, and support recommendations of the British Dietetic Association. BD may pose a viable alternative to commercial formula, and may mitigate symptoms of diarrhoea for adults and children who are tube‐fed. Key points: People who are enterally fed may experience adverse gastrointestinal symptoms (GIS) such as vomiting, diarrhoea, bloating, constipation and reflux.This systematic review finds evidence to suggest blended diets (BD) may mitigate symptoms of diarrhoea for adults and children who are enterally fed.There was insufficient evidence to determine the effect of BD on other GIS.These findings are congruous with the wider observational evidence base and support recommendations of the British Dietetic Association. [ABSTRACT FROM AUTHOR]

Background: Immune checkpoint inhibitors (ICIs) have significantly improved survival in advanced melanoma but are associated with immune‐related adverse events (irAEs). This single center, cross‐sectional survey aimed to describe the long‐term symptom burden and impact on health‐related quality of life (HRQL) of advanced melanoma patients with sustained disease control following treatment with ICIs. Methods: Advanced melanoma patients (stage IIB, III or IV, AJCCv8), treated with anti‐PD1‐based ICIs, who were off‐treatment and had at least 6 months follow‐up from their last infusion with an ongoing response in the metastatic setting or no evidence of disease recurrence in the adjuvant setting. A paper‐based questionnaire, consisting of the EORTC QLQ‐C30, EORTC QLQ‐FA12, and the PRO‐CTCAE was administered. Results: Of 90 participants, 61 (68%) completed the questionnaire; 40 received single‐agent anti‐PD1, and 21 anti‐PD1/anti‐CTLA4. Thirty‐three (54%) were treated in the adjuvant setting. At the time of enrolment, 31 (51%) participants had active treatment for a previous irAE. Overall, 18/61 (30%) participants reported long‐term symptoms and trouble in physical and emotional functioning. Physical fatigue was common and interfered with daily activities (n = 12, 20%). In the PRO‐CTCAE questionnaire, muscle ache (n = 12, 20%) and joint ache (n = 9, 15%) were commonly reported. Despite this, participants reported overall good health (6.00, range 2.00–7.00) and reasonable level of HRQL (6.00, range 3.00–7.00). Discussion: Melanoma survivors experience long‐term symptoms in physical and psychosocial HRQL domains after ICI treatment. These results underline the importance to address existing gaps in survivorship care, implement these findings in clinical practice and increase awareness for long‐term symptoms in these patients. [ABSTRACT FROM AUTHOR]

Objective: This paper reports the study design, participant characteristics, and recruitment results of By‐Band‐Sleeve, which investigated the clinical and cost‐effectiveness of gastric bypass, gastric banding, and sleeve gastrectomy in adults with severe obesity in the UK. Methods: A pragmatic open adaptive noninferiority trial with 3‐year follow‐up was conducted. Participants were randomly assigned to bypass or band initially and to sleeve after the adaptation. Co‐primary end points are weight loss and health‐related quality of life assessed using the EQ‐5D utility index. Results: Between December 2012 and August 2015, the study recruited into two groups and, after the adaptation, into three groups until September 2019. The study screened 6960 patients; 4732 (68%) were eligible and 1351 (29%) were randomized; 5 subsequently withdrew consent to use data, leaving 462, 464, and 420 assigned to bypass, band, and sleeve, respectively. Baseline data showed high levels of obesity (mean BMI = 46.4 kg/m2; SD: 6.9) and comorbidities (e.g., 31% diabetes), low scores for health‐related quality of life, and high levels of anxiety and depression (e.g., 25% abnormal scores). Nutritional parameters were poor, and the average equivalized household income was low (£16,667). Conclusions: By‐Band‐Sleeve fully recruited. Participant characteristics are consistent with contemporary patients having bariatric surgery, and therefore the results will be generalizable. [ABSTRACT FROM AUTHOR]

This article aims to explore the legal consciousness of migrant children in transit at the France–UK border. Based on secondary analysis of legal measures to help ensure child protection, and on ethnographic fieldwork in Calais, this paper shows that the legal consciousness of migrant children is shaped by several factors such as their experience of migration, their previous interactions with public institutions in Europe, their living conditions in transit areas, the police's harassment strategy, the influence of migrant peers and by their own migration plans. We will show that these factors have a deep impact on the legal consciousness of unaccompanied minors and consequently on both their (non‐)claim of protection and (non‐)use of legal tools. By mobilizing biographical sets of data, we will also show that their legal consciousness results from the combination of these contextual factors with their individual experiences and sociological characteristics (education, origin, ...). From a methodological point of view, this contribution provides evidence of the importance of adopting a child‐centred approach in ethnographic research. This approach highlights discrepancies between policy aims and children's needs. [ABSTRACT FROM AUTHOR]

Background: Studies suggest swallow intervention programmes that incorporate visual biofeedback and motor programming principles can improve swallowing and quality of life for people with idiopathic Parkinson's disease (IPD) and dysphagia. Few studies have examined outcomes using instrumentation. Aims: Using fibreoptic endoscopic examination of swallowing (FEES), this study examines the effectiveness of a neurorehabilitation intervention involving biofeedback via surface electromyography (sEMG) to improve swallowing in people with IPD, and to explore the feasibility of the intervention approach. Methods & Procedures: We recruited 12 participants with IPD and dysphagia. A total of 10 completed the study. Intervention was delivered for 1 h per day, 5 days per week, for 4 weeks (20 h). Swallowing tasks using sEMG biofeedback incorporated principles of motor learning and neuroplasticity. Instrumental and non‐instrumental assessment, including quality‐of‐life measures carried out at four different time points (two pre‐treatment and two post‐treatment). The final assessment was at 3 months post‐intervention. Outcome & Results: Statistically significant improvement (p < 0.05) in oral intake methods (95% confidence interval (CI) = 4.70–5.50) and in pharyngeal residue from saliva (95% CI = 2.14–3.15) and solids (95% CI = 2.4–3.5) post‐intervention were confirmed using FEES with improvements at 3 months. The intervention protocol was well tolerated. Participants reported positive change in saliva control and duration of mealtimes as well as unanticipated improvements in voice and cognitive attention. Conclusions & Implications: An intensive neurorehabilitation with biofeedback shows positive effects in improving swallow function in IPD. This protocol is feasible with amendments to inform a larger clinical trial. What this paper adds: What is already known on the subject: Biofeedback has positive effects on increasing swallowing function and quality of life in people with IPD and dysphagia. sEMG is the most common method used to deliver swallowing biofeedback in this population. The quality of the evidence on the intervention, based on findings from a recent systematic review, is low. Included studies in this review were heterogeneous in terms of type and frequency of biofeedback, study design and outcome measures. The majority of outcome measures were subjective and higher quality studies to examine the efficacy of biofeedback using sEMG are needed. What this study adds: Recognizing the limitations of earlier studies, this within‐subject feasibility study examined the efficacy and effectiveness of an intensive biofeedback intervention using sEMG in a sample of people with dysphagia and IPD. Valid and reliable outcome measures were used and repeated after a 3‐month period. The feasibility of the methodological approach was also tested and a qualitative component was included in the study. Positive findings were evident. Qualitative information added new perspectives and provided direction for new outcomes to be included in future studies. This study helps to inform further research trials as well as clinical practice. Clinical implications of this study: This intensive intervention using principles of neuroplasticity and motor programming with sEMG biofeedback led not only to positive swallowing outcomes but also to unexpected benefits such as improved voice production and general attention skills. No adverse events were reported. Improvement in function was retained at 3 months post‐intervention. Despite the small sample size, participants described the benefits of the treatment, and enjoyed sEMG biofeedback tasks, especially using an sEMG game mode. This suggests that intensive biofeedback not only improved swallowing but also was acceptable to these participants. This intensive protocol has merit and is worth considering further in clinical practice. [ABSTRACT FROM AUTHOR]

Background: Fragmented and complex healthcare systems make it difficult to provide continuity of care for patients with advanced cancer near the end of life. Nurse‐based cross‐sectoral navigation support has the potential to increase patients' quality of life. The objective of this paper was to evaluate associations between navigation support and health care utilization, and the associated costs of care. Methods: The evaluation is based on claims data from 37 statutory health insurance funds. Non‐randomized recruitment of the intervention group (IG) took place between 2018 and 2019 in four German hospitals. The comparison group (CG) was defined ex post. It comprises nonparticipating clients of the involved health insurance funds matched on age, gender, and diagnosis in a 1:4 ratio to the IG. Healthcare resource utilization was compared using incident rate ratios (IRRs) based on negative binomial regression models. Linear mixed models were performed to compare differences in lengths of hospital stays and costs between groups. Results: A total of 717 patients were included (IG: 149, CG: 568). IG patients showed shorter average lengths of hospital stays (IG: 11 days [95% CI: 10, 13] vs. CG: 15 days [95% CI: 14, 16], p < 0.001). In the IG, 21% fewer medications were prescribed and there were on average 15% fewer outpatient doctor contacts per month. Average billed costs in the IG were 23% lower than in the CG (IG: 6754 EUR [95% CI: 5702, 8000] vs. CG: 8816 EUR [95% CI: 8153, 9533], p < 0.001). Conclusions: The intervention was associated with decreased costs mainly as a result of a non‐intended navigation effect. The social care nurses had navigated patients within the hospital early, needs‐oriented and effectively but interpreted their function less cross‐sectorally. Linkage of hospital‐based navigators with the outpatient care sector needs further exploration. [ABSTRACT FROM AUTHOR]

The article discusses various papers published in this issue including one by Steel et al. on family quality life, Myson and Roeyers on qualitative research design and phenomenology-based interviews, and one by Svraka et al. on Bosmian families of adult school students.

Objective. To determine whether e/Tablets (wireless tablet computers used in community oncology clinics to collect review of systems information at point of care) are feasible, acceptable, and valid for collecting research-quality data in academic oncology. Data/Setting. Primary/Duke Breast Cancer Clinic. Design. Pilot study enrolling sample of 66 breast cancer patients. Methods. Data were collected using paper- and e/Tablet-based surveys: Functional Assessment of Cancer Therapy General, Functional Assessment of Cancer Therapy-Breast, MD Anderson Symptom Inventory, Functional Assessment of Chronic Illness Therapy (FACIT), Self-Efficacy; and two questionnaires: feasibility, satisfaction. Principal Findings. Patients supported e/Tablets as: easy to read (94 percent), easy to respond to (98 percent), comfortable weight (87 percent). Generally, electronic responses validly reflected responses provided by standard paper data collection on nearly all subscales tested. Conclusions. e/Tablets offer a valid, feasible, acceptable method for collecting research-quality, patient-reported outcomes data in outpatient academic oncology. [ABSTRACT FROM AUTHOR]

Aim: To determine the efficacy of fenfluramine on seizure frequency in patients with Sunflower syndrome. Secondary endpoints were changes in electroencephalogram (EEG) characteristics, cognitive functioning, executive functioning, and quality of life. Method: In this open‐label study, patients underwent a 4‐week baseline period, followed by 3 months of treatment. An oral solution of fenfluramine was administered twice daily for 3 months. The dose was titrated up to a maximum dose of 0.7mg/kg/day or 26mg/day. Cardiac safety was monitored by transthoracic echocardiogram and electrocardiogram. EEGs, abbreviated neuropsychological testing, and questionnaires were administered before starting the study medication and again at the end of the treatment period. Results: Ten patients (eight females, two males; mean age 13y 4mo [SD 4y 11mo], range 7–24y) were enrolled in the study. Nine of the 10 patients completed the core study, eight of whom met the primary endpoint. There were no observations of cardiac valvulopathy or pulmonary hypertension during the study. Interpretation: Treatment with low‐dose fenfluramine resulted in a clinically significant reduction in seizure frequency, including hand‐waving episodes. Fenfluramine may be an effective treatment option for patients with Sunflower syndrome. What this paper addsNine patients with Sunflower syndrome were treated with fenfluramine.Eight patients were responders, displaying a ≥30% reduction in seizure activity.Six patients experienced a ≥70% reduction in hand‐waving episodes.Improvements on electroencephalogram were observed after treatment with fenfluramine.None of the patients developed evidence of cardiac valvulopathy or pulmonary hypertension. What this paper adds: Nine patients with Sunflower syndrome were treated with fenfluramine.Eight patients were responders, displaying a ≥30% reduction in seizure activity.Six patients experienced a ≥70% reduction in hand‐waving episodes.Improvements on electroencephalogram were observed after treatment with fenfluramine.None of the patients developed evidence of cardiac valvulopathy or pulmonary hypertension. [ABSTRACT FROM AUTHOR]

Copyright of Antipode is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

OBJECTIVE To investigate how quality of life (QoL) components measured by given instruments direct the QoL perspective in treatment studies of lower urinary tract symptoms (LUTS) and benign prostatic hyperplasia (BPH). METHODS Computer searches were conducted in Medline, CINAHL and Psychinfo; MeSH terms covering QoL and surgical treatments for BPH and LUTS were combined for the search. The analysis was based on a framework linking components of QoL to patient outcome. RESULTS Of the 74 papers meeting the inclusion criteria, 48 were published in 1997–2001, showing the increase of interest of the topic. Most of the papers reported the change in QoL by a one-item scale, whilst only a few reported results from several of the components in the QoL concept. Some papers regarded the change in general health status or parts of health status as changes in QoL. Functional status and symptoms, and the bother of symptoms, were often regarded as indicators of a change in QoL. CONCLUSION These analyses show an increasing interest in measuring QoL after surgery for LUTS and BPH. In most of the studies analysed, the batteries of instruments selected were too narrow in scope to study the complexity of QoL. Most papers are based on instruments sensitive to change, but the reports do not distinguish the basic assumptions for understanding relationships important in QoL research and as a result, the reason for change is open to question. [ABSTRACT FROM AUTHOR]

Using Australian data, this paper proposes a three‐tiered model of overall life satisfaction as a function of socio‐economic characteristics and satisfaction with areas of life and personality traits. Mediation analysis through structural equation modelling is employed using data from the 17th wave of the Household, Income and Labour Dynamics in Australia (HILDA) survey. The findings provide evidence for the interconnectedness of the three tiers of the model and their joint contribution to overall life satisfaction. Personality traits have significant direct and even stronger indirect effects on life satisfaction, mediated by their effects on satisfaction with areas of life, which has been previously overlooked. Socio‐economic characteristics have significant indirect effects on life satisfaction, which are most often omitted in analyses of life satisfaction. Satisfaction with areas of life remain strong predictors of overall life satisfaction, but only alongside personality traits and socio‐economic characteristics. The findings provide new methodological insights into the factors contributing to the measurement of life satisfaction, "all things considered". Furthermore, results may support policy makers to target vulnerable groups and identify approaches to improve their well‐being. [ABSTRACT FROM AUTHOR]

Aim: To examine the impact of clinical factors, cognitive deficits, and sleepiness on health‐related quality of life (HRQoL) among young people with craniopharyngioma. Method: Seventy‐eight patients (67% White; 41 males, 37 females; mean age 10y 8mo, SD 3y 11mo, range 6–20y) with craniopharyngioma were assessed for tumor extent and diabetes insipidus. All patients underwent overnight polysomnography and multiple sleep latency tests after surgical resection. Executive functioning was assessed using parent‐reported measures. Patients and their parents completed measures of HRQoL. None had a history of previous radiation therapy. Results: Path analysis was used to test hypothesized relations while controlling for demographic and disease characteristics. Analyses revealed poorer parent‐reported HRQoL among young people with greater executive functioning symptoms (estimate −0.83; p<0.001). Direct and indirect effects were found among diabetes insipidus, executive functioning, and parent‐reported HRQoL. Diabetes insipidus directly predicted greater global executive functioning impairment (estimate 5.15; p=0.04) and indirectly predicted lower HRQoL through executive functioning impairment (estimate −4.25; p=0.049). No significant effects were found between excessive daytime sleepiness, tumor hypothalamic involvement, diabetes insipidus, executive functioning, and patient‐reported HRQoL. Interpretation: These findings suggest that young people with craniopharyngioma presenting with diabetes insipidus may benefit from targeted neurocognitive and psychosocial screening to inform interventions. What this paper addsChildren with craniopharyngioma and executive functioning impairment are more likely to have poorer health‐related quality of life (HRQoL).Diabetes insipidus, a complication associated with surgery, predicted greater executive functioning impairment.Diabetes insipidus indirectly predicted lower parent‐reported HRQoL through executive functioning impairment. What this paper adds: Children with craniopharyngioma and executive functioning impairment are more likely to have poorer health‐related quality of life (HRQoL).Diabetes insipidus, a complication associated with surgery, predicted greater executive functioning impairment.Diabetes insipidus indirectly predicted lower parent‐reported HRQoL through executive functioning impairment. This article is commented on by Cheetham and Wood on page 895 of this issue. [ABSTRACT FROM AUTHOR]

Microfinance institutions have made a significant progress in the last decade with elliptic growth in clients all over the world. As a financial inclusion initiative, microfinance institutions have performed well insofar as outreach to gender diverse groups is concerned. However, their role in poverty alleviation and social mobility is still not convincing albeit the incentives targeted on female borrowers. This paper aims to study the impact of microfinance initiative on enhancement of quality of life (QOL), personal empowerment and familial harmony of the female borrowers through logit probit regression model. Our results show a significant impact of microfinance on QOL enhancement of female borrowers, as well as their families, mediated by personal empowerment. This paper introduces the concept of familial harmony as an integral predictor of QOL of females in Pakistan. Our findings may be helpful in devising cointegrated policies directed upon community and gender‐based microfinance initiatives in public private partnerships. [ABSTRACT FROM AUTHOR]

Aim: To gain insight into parents' perspectives about their decision‐making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. Method: This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. Results: Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. Interpretation: It is important physicians understand that there are different perspectives influencing the decision‐making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper addsParents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.Parents' perspectives varied from battling the disease to preserving quality of life.Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.Clear and honest information facilitated the alignment of values and goals. What this paper adds: Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.Parents' perspectives varied from battling the disease to preserving quality of life.Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.Clear and honest information facilitated the alignment of values and goals. [ABSTRACT FROM AUTHOR]

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

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

Aims: To assess the association between length of dental arch and oral health‐related quality of life in head and neck cancer patients post‐radiotherapy. Methods: Thirty head and neck cancer participants reported their oral health‐related quality of life using the oral health impact profile‐14 instrument and their global self‐rating of general and oral health. All patients had received chemotherapy and radiotherapy. The length of dental arch was assessed in three tooth relational categories: canine‐to‐canine, shortened (premolars to premolars), and long (molars to molars) dental arches. Inclusion of participants for any of the three categories required verification of opposing teeth relationship with Shim Stock paper. Results: Out of 30 head and neck cancer patients, eight (27%) had a canine‐to‐canine dental arch, 14 (46%) had a shortened dental arch, and eight (27%) had a long dental arch. The median oral health impact profile‐14 scores for participants respectively with the canine‐to‐canine dental arch was six (IQR = 9.25), seven (IQR = 8) for participants with shortened dental arch, and 11 (IQR = 12.5) for participants with long dental arch. There were no significant differences in oral health impact profile‐14 scores between the three‐tooth relational groups (Kruskal‐Wallis H = 0.769, df = 2, P‐value =.681). Similarly, there were no significant differences between three‐tooth relational groups on the self rating of general (Chi‐squared = 1.714, df = 2, P‐value =.424) and oral health (Chi‐squared = 1.393, df = 2, P‐value =.498). Conclusion: Within the limitations of this study, no association was found between the length of dental arch and oral health‐related quality of life in head and neck cancer patients post‐radiotherapy. Other factors such as dry mouth, oral mucositis, loss of taste, and trismus should be considered as contributory factors to reduced oral health‐related quality of life in head and neck cancer patients post‐radiotherapy, particularly in relation to eating difficulties. [ABSTRACT FROM AUTHOR]

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

Aim: To assess the association between epilepsy characteristics and proxy‐reported health‐related quality of life (HRQoL) in children and young people with non‐ambulatory cerebral palsy (CP) and seizures. Method: This was a cross‐sectional study of 164 children and young people (74 females, 90 males; mean age 10 years 6 months, range 2–21 years, SD 5 years 5 months). Caregivers completed the Child Health Index of Life with Disabilities (CPCHILD) in an outpatient setting. We utilized univariable linear regression and multivariable modeling to study relationships between variables and CPCHILD scores. Results: Gross Motor Function Classification System levels were 37% IV and 63% V. Sociodemographic factors included the Child Opportunity Index (median 51, interquartile range [IQR] 25–80). A median of 2 (IQR 1–3) antiseizure medications (ASMs) were used, and days with seizures ranged from 0 (30%) to 28 (20%) days in the previous 4 weeks. Total CPCHILD scores decreased 2.3 points for each ASM (95% confidence interval [CI] –4.1 to −0.42). Compared to persons with focal epilepsy, those with generalized epilepsy had lower total CPCHILD scores (−5.7; 95% CI –11 to −0.55). Number of days with seizures was not associated with total CPCHILD scores. Interpretation: Proxy‐reported HRQoL was affected by epilepsy‐specific features in children and young people with severe CP. What this paper adds: Health‐related quality of life (HRQoL) was lower with increasing numbers of antiseizure medications.Overall quality of life (QoL) scores were lower by a similar amount, independent of seizure frequency.HRQoL was lower in persons with recent hospital admissions for epilepsy. [ABSTRACT FROM AUTHOR]

Topic: Mobile Health (mHealth) stands as a potential means to better reach, assess, and intervene with teens with socially complex needs. These youth often face overlapping adversities including medical illness and a history of experiencing adverse childhood experiences (ACEs). Clinicians are faced with navigating ethical decisions when developing mHealth tools for teens who have socially complex needs. Many tools have been developed for adults from the general population. However, despite the development of thousands of mHealth interventions, developers tend to focus on designing for usability, engagement, and efficacy, with less attention on the ethical considerations of making such tools. Purpose: To safely move mHealth interventions from research into clinical practice, ethical standards must be met during the design phase. In this paper we adapt the Four Box Model (i.e., medical indications, preferences of patients, quality of life, and contextual features) to guide mHealth developers through ethical considerations when designing mHealth interventions for teens who present with a medical diagnosis and a history of ACEs. Sources: A review of language, inclusive features, data sharing, and usability is presented using both the Four Box Model and potential scenarios to guide each consideration. Conclusions: To better support designers of mHealth tools we present a framework for evaluating applications to determine overlap with ethical design and are well suited for use in clinical practice with underserved pediatric patients. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcome measures (PROMs) are not routinely used in clinical care by pediatric liver transplant (LT) teams. The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) assessed feasibility of using a disease‐specific Quality of Life (QoL) questionnaire in the ambulatory setting at 10 SNEPT sites. Methods: A mixed methods feasibility project assessing administration processes, barriers, and user experiences with the Pediatric Liver Transplant Quality of Life (PeLTQL) tool. Iterative processes sought stakeholder feedback across four phases (Pilot, Extended Pilot, Development of a Mobile App PeLTQL version, and Pilot App use). Results: A total of 149 patient–parent dyads completed the PeLTQL during LT clinic follow‐up. Clinicians, parents, and patients evaluated and reported on feasibility of operationalization. Only two of 10 SNEPT sites continued PeLTQL administration after the initial two pilot phases. Reasons include limited clinical time and available personnel aggravated by the COVID‐19 pandemic. In response, a mobile application version of the PeLTQL was initiated. Providing PeLTQL responses electronically was "very easy" or "easy" as reported by 96% (22/23) parents. Conclusions: Administration of a PROM into post‐pediatric LT clinical care was feasible, but ongoing utilization stalled. Use of a mobile app towards facilitating completion of the PeLTQL outside of clinic hours may address the time and work‐flow barriers identified. [ABSTRACT FROM AUTHOR]

In this paper, we provide an analysis of the concept of recovery from substance use. We performed a literature search in CINAHL Plus, PsycINFO, MEDLINE, and Embase using key terms that focused on the concept of recovery from substance use. We also conducted a grey literature search and included select resources. Inclusive years for the search ranged from January 1, 2000 to March 10, 2022. Records were screened for eligibility by two independent reviewers; data were extracted by one reviewer and confirmed by a second. A total of 22 literature sources were included. Identified core attributes of recovery include: (i) recovery as a process, (ii) recovery as more than managing substance use, (iii) recovery as life improvements, and (iv) recovery as a person‐centred, individual concept. Antecedents, consequences, and empirical referents are identified, and model and contrary cases are presented. We propose the following definition for recovery: Recovery from substance use is defined by the affected individual, who sets goals and objectives for life improvements that include managing their substance use, but this is not the sole focus. Recovery is a person‐centred, individualized process that can be measured by referents that suit the individual's own goals and objectives. What may constitute "recovery" and "recovered" requires definition by each individual. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disabilities are an at‐risk group of developing dementia. In the absence of a cure for dementia, emphasis on treatment is the promotion of Quality of life (QoL). The aim of this review is to identify and describe QoL tools for people with intellectual disabilities and dementia. Method: A systematic review was carried out using 10 databases and papers from up to March year 2021. Results: Two instruments were identified and examined. The QoL in late‐stage dementia, which showed evidence of good levels of internal consistency, intra‐rater reliability, test–retest reliability, and convergent validity. The Dementia Quality of Life – proxy was also used; however, its psychometric properties have yet to be studied within the intellectual disabilities population. Conclusion: It is recommended instruments should be developed and psychometrically tested specifically for adults with intellectual disabilities and dementia to help inform policy makers, measure outcomes of interventions and personal outcomes. [ABSTRACT FROM AUTHOR]

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

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

An introduction to the journal is presented that focuses on people with learning disabilities, including a study on experiences of men becoming fathers that relates to a developing child without intellectual disabilities, reasons for disclosure and non-disclosure of bad news to people with learning disabilities, and health policy in England that requires learning disability services to include the people who use them in service commissioning, planning, and delivery.

Interpersonal relationships are critically important to ensuring that people with disability can access the benefits of individual funding models such as the National Disability Insurance Scheme (NDIS). The NDIS aims to enhance participants' self‐determination of supports and social and economic participation, but the emerging evidence indicates that achieving these policy outcomes requires stronger recognition of participants' relational context, even in a system focused on individual choice and control. This paper reports on a content analysis of the NDIS Act, NDIS Rules, Operational Guidelines, and Price Guide to examine the extent to which the scheme's conceptual foundations and funded supports in individual plans enable it to support relationships. Implications are drawn from this analysis and theory and evidence about the importance of relationships for disability policy and practice. The paper outlines three areas where the approach of the NDIS to relationships is limited and can be improved: first, by conceptualizing relationships as relationships rather than simply sources of informal support; second, through provisions to actively support relationships; and third, by considering the relational appropriateness of support provided by family, carers, and friends. It concludes with suggestions for how relational considerations can be enhanced, including implications for government in administering the scheme. This paper examines the extent to which Australia's National Disability Insurance Scheme (NDIS) has been shaped in accordance with the "relational turn" in thinking about services for people with disability. Drawing on a content analysis of key NDIS documents, we argue that the success and sustainability of the scheme relies on participants' relational context. Fostering positive and fulfilling relationships should be a stronger focus of the scheme to ensure successful implementation and positive outcomes for participants. [ABSTRACT FROM AUTHOR]

The article highlights various research papers published in Acta Paediatrica. The Young Investigator Award for 2023 was shared by Elina Oldhoff and Magnus Öhlund for their papers on Human bocavirus 1 epidemiology in children and Food protein‐induced enterocolitis syndrome among children in northern Sweden, respectively. Another study examined the increase in cases of foetal situs inversus in China during the COVID-19 pandemic, while a separate study investigated normal values of cerebral blood volume in preterm neonates. Additionally, a systematic review assessed the cognition, mental health, and quality of life of term-born children with preterm-born siblings, and a study examined the trends in underweight among Danish school children from 1936 to 2011. [Extracted from the article]