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Transition services—programs that support adolescents and young adults (AYAs) as they move from a child‐centered to a more autonomous, adult‐orientated healthcare system—have been associated with improved short‐ and long‐term healthcare outcomes. Unfortunately, there is a paucity of evidence exploring transition services within the neurogastroenterology and motility (NGM) field. The overall aim of this article, endorsed by the American Neurogastroenterology and Motility Society and European Society of Neurogastroenterology and Motility, is to promote a discussion about the role of transition services for patients with NGM disorders. The AYAs addressed herein are those who have: (a) a ROME positive disorder of gut–brain interaction (DGBI), (b) a primary or secondary motility disorder (including those with motility disorders that have been surgically managed), or (c) an artificial feeding requirement (parenteral or enteral tube feeding) to manage malnutrition secondary to categories (a) or (b). The issues explored in this position paper include the specific physical and psychological healthcare needs of patients with NGM disorders; key healthcare professionals who should form part of a secondary care NGM transition service; the triadic relationship between healthcare professionals, caregivers, and patients; approaches to selecting patients who may benefit most from transition care; methods to assess transition readiness; and strategies with which to facilitate transfer of care between healthcare professionals. Key areas for future research are also addressed, including the construction of NGM‐specific transition readiness questionnaires, tools to assess post‐transfer healthcare outcomes, and educational programs to train healthcare professionals about transition care in NGM. [ABSTRACT FROM AUTHOR]

Aim: To assess the protocol feasibility and intervention acceptability of a community-based, peer support diabetes prevention programme (DPP) for African-American (AA) grandmother caregivers at risk for diabetes., Materials and Methods: Grandmother caregivers were randomized in a 2:1 ratio to DPP (active comparator) or DPP plus HOPE (Healthy Outcomes through Peer Educators; intervention). DPP + HOPE incorporated support from a peer educator who met with participants in person or by telephone every week during the 1-year intervention. Outcomes included: (1) recruitment rates, outcome assessment, and participation adherence rates assessed quantitatively; and (2) acceptability of the programme assessed through end-of-programme focus groups., Results: We successfully consented and enrolled 78% (n = 35) of the 45 AA grandmothers screened for eligibility. Eighty percent of participants (aged 64.4 ± 5.7 years) were retained up to Week 48 (74% for DPP [n = 17] and 92% for DPP + HOPE [n = 11]). All grandmothers identified social support, neighbourhood safety, and access to grocery stores as influences on their health behaviours. At Month 12, the active comparator (DPP) group and the intervention group (DPP + HOPE) had a mean change in body weight from baseline of -3.5 ± 5.5 (-0.68, -6.29) kg and - 4.4 ± 5.7 (-0.59, -8.2) kg, respectively., Conclusions: This viable study met the aim of educating and equipping AA grandmothers with the practical and sustained support needed to work toward better health for themselves and their grandchildren, who may be at risk for diabetes. The intervention was both feasible and acceptable to participating grandmothers and their organizations., (© 2024 The Authors. Diabetes, Obesity and Metabolism published by John Wiley & Sons Ltd.)

Coronavirus disease 2019 (COVID-19) first emerged in China in November 2019. Most governments have responded to the COVID-19 pandemic by imposing a lockdown. Some evidence suggests that a period of isolation might have led to a spike in alcohol misuse, and in the case of patients with alcohol use disorder (AUD), social isolation can favour lapse and relapse. The aim of our position paper is to provide specialists in the alcohol addiction field, in psychopharmacology, gastroenterology and in internal medicine, with appropriate tools to better manage patients with AUD and COVID-19,considering some important topics: (a) the susceptibility of AUD patients to infection; (b) the pharmacological interaction between medications used to treat AUD and to treat COVID-19; (c) the reorganization of the Centre for Alcohol Addiction Treatment for the management of AUD patients in the COVID-19 era (group activities, telemedicine, outpatients treatment, alcohol-related liver disease and liver transplantation, collecting samples); (d) AUD and SARS-CoV-2 vaccination. Telemedicine/telehealth will undoubtedly be useful/practical tools even though it remains at an elementary level; the contribution of the family and of caregivers in the management of AUD patients will play a significant role; the multidisciplinary intervention involving experts in the treatment of AUD with specialists in the treatment of COVID-19 disease will need implementation. Thus, the COVID-19 pandemic is rapidly leading addiction specialists towards a new governance scenario of AUD, which necessarily needs an in-depth reconsideration, focusing attention on a safe approach in combination with the efficacy of treatment. [ABSTRACT FROM AUTHOR]

The linguistic input children receive across early childhood plays a crucial role in shaping their knowledge about the world. To study this input, researchers have begun applying distributional semantic models to large corpora of child-directed speech, extracting various patterns of word use/co-occurrence. Previous work using these models has not measured how these patterns may change throughout development, however. In this work, we leverage natural language processing methods-originally developed to study historical language change-to compare caregivers' use of words when talking to younger versus older children. Some words' usage changed more than others; this variability could be predicted based on the word's properties at both the individual and category levels. These findings suggest that caregivers' changing patterns of word use may play a role in scaffolding children's acquisition of conceptual structure in early development., (© 2022 Cognitive Science Society LLC.)

This paper is based on longitudinal ethnographic work among Bulgarian migrant women who work as live‐in caregivers and domestic workers in Italian households and explores the analytical potential of place and place making for transmigration literature by conceptualizing the co‐production of place with subjectivities. Such approach sensitizes to mundane practices of care and belonging, which actively create migratory lives of meaning. Drawing on Deleuze's concept of the fold as subjectivity and Clifford's notion of dwelling‐in‐travelling, I propose the term 'dwelling‐in‐folds' – and its mechanism 'folding place' – in order to make sense of temporary migrants' experience of place(s) that foregrounds their ability to connect and reconcile fractures and discontinuities, particularly when doing transnational motherhood. In doing so, the paper folds place empirically – showing how 'dwelling‐in‐folds' is achieved and unfolds place analytically – demonstrating the potential of this concept for sociology and transmigration studies. [ABSTRACT FROM AUTHOR]

Objective: This exploratory project aims to provide an empirical understanding of the caregiver-reported emotional and behavioural functioning of children 12 and under who present to an inpatient psychiatric unit with suicidal ideation and/or attempts., Method: A retrospective chart review was conducted, including all patients (n = 573) aged 12 and under admitted to a psychiatric inpatient unit between September 2011-December 2015 for suicidal ideation without proximal attempt (n = 155) or a suicide attempt (n = 37). Inpatients without suicidal thoughts and behaviour in the same age range (n = 381) served as a control group. The three groups were compared on a range of variables, including patient history/demographics, caregiver-reported emotional/behavioural functioning, and discharge diagnoses., Results: Children who were admitted to a psychiatric inpatient unit following suicide attempts and/or ideation demonstrated clinically significant levels of externalizing and internalizing symptoms. Children with suicidal thoughts and behaviour (STB) were more likely to be female and older than their peers without STB, more likely to report a history of sexual abuse and non-suicidal self-injury, and to be diagnosed with a depressive disorder., Conclusions: Children with STB differ demographically, symptomatically, and diagnostically from their peers without STB with comparable levels of psychiatric impairment (i.e., necessitating inpatient admission). Results provide provisional information on this concerning group of children, which can be used to aid identification of risk factors, inform treatment, and stimulate future work., (© 2022 John Wiley & Sons Australia, Ltd.)

Objective: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.Methods: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.Results: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.Conclusions: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation. [ABSTRACT FROM AUTHOR]

Executive functions (EFs) enable us to control our attention and behavior in order to set and work toward goals. Strong EF skills are linked to better academic performance, and greater health, wealth, and happiness in later life. Research into EF development has been hampered by a lack of scalable measures suitable for infancy through to toddlerhood. The 31-item Early Executive Functions Questionnaire (EEFQ) complements temperament measures by targeting cognitive and regulatory capabilities. Exploratory Factor Analysis (n = 486 8- to 30-month-olds) and Confirmatory Factor Analysis (n = 317 9- to 30-month-olds) indicate Inhibitory Control, Flexibility, and Working Memory items load onto a common "Cognitive Executive Function (CEF)" factor, while Regulation items do not. The CEF factor shows strong factorial measurement invariance for sex, and partial strong factorial measurement invariance for age. CEF and Regulation scores show limited floor and ceiling effects, good internal consistency, short-term stability, and convergent validity with carer-report measures of attentional control. The EEFQ is sensitive to developmental change. Results indicate that the widely overlooked period between late infancy and early toddlerhood may be a sensitive period for EF development. The low-resource demands of the EEFQ afford the possibility to study emergent EFs at scale; opening up new opportunities in basic developmental and intervention research., (© 2021 The Authors. Infancy published by Wiley Periodicals LLC on behalf of International Congress of Infant Studies.)

Purpose: Dentists can address childhood obesity by educating patients about mediating factors, such as nutrition and dietary habits, facilitating behavioral interventions, and participating in interprofessional collaborations. Dental schools are encouraged to prepare future dentists to address childhood obesity. The aim of this study was to assess dental students' attitudes, comfort, and perceived barriers discussing nutrition and obesity prevention with parents and caregivers of children aged 0-5, after a one-time service-learning experience in a pediatric primary care setting to promote oral health., Methods: Following conversations with parents and caregivers, students completed an 11-item survey via Qualtrics., Results: Of 144 second-year dental students that participated in the service-learning experience over 2 years, 101 participated in the survey for a response rate of 70.1%. Most students agreed that dentists' roles include discussing nutrition (98.0%) and obesity prevention (83.2%). During the service-learning experience, 78.2 percent of students discussed nutrition, and 5.0% discussed obesity prevention, with 3.0% and 22.8% of students reporting some level of discomfort with each topic, respectively. The most reported barriers for discussing both nutrition and obesity prevention were concern for "appearing judgmental" and "fear of offending clients." Mean comfort scores among students who reported barriers of "appearing judgmental" (p = < 0.0001) and "fear of offending clients" (p = 0.017) for nutrition discussions, and a "lack of parental acceptance of guidance" as a barrier for discussing obesity prevention (p = 0.016), suggest that those barriers were associated with less comfort., Conclusion: Dental students' perceived barriers to discussing nutrition and obesity prevention with parents and caregivers may negatively influence dental students' comfort., (© 2021 American Dental Education Association.)

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context., Design: Real-time qualitative design using the photovoice method., Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narratives for each photograph based on their experiences of caregiving. In total, 126 photographs and their corresponding narratives were analysed using content analysis., Results: Seven inter-related themes were identified. MS caregiving-related challenges, sense of loss (e.g., loss of activities), emotional impact (e.g., feeling lonely), urge to escape, and sense of anxiety over the unpredictability of MS carer role were discussed in relation to the negative experiences that compromised their QoL. The themes precious moments (e.g., time spent with loved ones or hobbies) and helpful support (e.g., family and pets) encompassed participants' positive experiences that enhanced their QoL., Conclusions: Findings demonstrated the multi-faceted and complex nature of MS caregiver's QoL and highlighted that although the experiences of MS carers were mostly negative, there were also some positive aspects to caregiving, that helped enhance carers' QoL by ameliorating these negative experiences. These findings can be used to inform support programmes and enhance service provision for MS carers., (© 2020 The Authors. British Journal of Health Psychology published by John Wiley & Sons Ltd on behalf of British Psychological Society.)

Objective: The objective of the paper is to describe the impact of Spanish psychiatric reform on the organization and functioning of mental health services. Method: This paper is based on official administrative reports and on relevant related publications. Results: The most significant achievements of Spanish psychiatric reform have been: (i) the development of a new organization of mental health care, decentralized in character and territorially based; (ii) the integration of psychiatric patients in general health care; (iii) the creation of an extensive community network of health centres; and (iv) the development of more positive attitudes towards mental illness. However, our analysis also reveals the existence of significant deficiencies. Conclusion: Analysis of the Spanish experience shows that the process of psychiatric reform depends basically on long-term commitments, which in a system such as Spain's must come from central administration and also from the autonomous communities. [ABSTRACT FROM AUTHOR]

Objective: Psychological interventions reduce the impact of psychosis, but widescale implementation is problematic. We tested the feasibility of group acceptance and commitment therapy for Psychosis (G-ACTp), delivered by frontline staff, and co-facilitated by service-user experts-by-experience (SU-EbyE), for service-users and informal caregivers (ISRCTN: 68540929). We estimated recruitment/retention rates and outcome variability for future evaluation., Methods: Staff and SU-EbyE facilitators completed 1-day workshops, then delivered closely supervised G-ACTp, comprising four sessions (weeks 1-4) and two boosters (10 and 12 weeks). Participants recruited from adult community psychosis services were randomized to receive G-ACTp immediately or after 12 weeks, completing outcome assessments at 0, 4, and 12 weeks. Service-use/month was calculated for 1-year pre-randomization, weeks 0-12, and 5-year uncontrolled follow-up., Results: Of 41 facilitators trained (29 staff, 12 SU-EbyE), 29 (71%; 17 staff, 12 SU-EbyE) delivered 18 G-ACTp courses. Participant refusal rates were low (9% of service-users [10/112]; 5% of caregivers [4/79]); 60% of those invited to participate attended ≥1 G-ACTp session (64% of service-users [39/61]; 56% of caregivers [35/63]). Randomization of facilitators and participants proved problematic and participant follow-up was incomplete (78% [66/85]; 82% of service-users [36/44]; 73% of caregivers [30/41]). Effect sizes ranged from very small to large mostly favouring treatment. Service-use reductions require cautious interpretation, as very few participants incurred costs., Conclusions: Implementation appears feasible for service-users; for caregivers, retention needs improving. Outcome variability indicated n = 100-300/arm followed up (α = 0.05, 90% power). Methodological limitations' mean replication is needed: identified sources of potential bias may be reduced in a cluster randomized design with sessional outcome completion., Practitioner Points: Group acceptance and commitment therapy can be successfully adapted for people with psychosis and their caregivers. Implementation (training and delivery) is possible in routine community mental health care settings. Clinical and economic outcomes are promising, but replication is needed. Recommendations are made for future studies., (© 2020 British Psychological Society.)

Objective Despite increased research into how caring for a child diagnosed with juvenile idiopathic arthritis (JIA) affects mothers, more needs to be known about ways in which such experiences transform their lives. Insight into the experiences of such mothers was sought through analysis of interviews with eight mothers and one father caring for a child with JIA. Design The study is situated within a larger project involving families with a child with JIA. A social constructionist approach was adopted and grounded theory including a 'negative case,' guided gathering and analysing data. Individual, semi-structured interviews were conducted based on the research question: 'What is it like to be the mother of a child with juvenile idiopathic arthritis?' Results Findings suggest that mothers find difficulty living up to the 'ideal mother' expected within Western society when forced to provide competing demands of age-related, yet illness-relevant care. The unpredictable nature of JIA means mothers face a lack of understanding from professionals so become hyper-vigilant, 'battling' on behalf of their ill child. A self-perpetuating loop develops if this is misperceived as being overprotective, leaving mothers vulnerable to being judged 'neurotic'. However, with experience, often at an emotional cost, such mothers' confidence in managing the competing demands of caring for their ill child increases such they can navigate a positive journey from 'neurotic' to 'managing' mother. Conclusions Understanding this process could help health care professionals reduce stressful experiences faced by mothers when caring for a chronically ill child. Statement of contribution What is already known on this subject? Mothers of chronically ill children are often diagnosed with anxiety and depression. Such mothers will have taken over managing their child's condition, and this can include negative experiences within the health care system. Qualitative methods enable deeper understanding of the experiences of mothers of chronically ill children. What does the study add? Potentially gendered position of mothers of children with chronic conditions. Taken for granted assumptions implicitly underpin interactions between mothers and some professionals. Greater partnership between mothers and professionals ultimately improves the care of the ill child., (© 2020 The British Psychological Society.)

Rationale, Aims and Objectives: Although Bangladeshis are three times more likely to be carers than White British, Bangladeshi family carers are the most deprived, neglected, and effectively a hidden group in the United Kingdom. 1 There is a paucity of research within the Bangladeshi community that is capable of explaining and predicting the experiences and concerns of Bangladeshi family carers providing care for their relatives with dementia. The purpose of this study is to explore the perspectives of Bangladeshi family carers' knowledge and day-to-day experiences living in England., Methods: This is a qualitative study involving semistructured face-to-face interviews with six Bangladeshi family carers living in London and Portsmouth. Interviews were recorded with the consent and transcribed verbatim. Data were managed by using NVivo software, and thematic analysis was performed., Results: This paper explores that most carers have a lack of knowledge and awareness of the symptoms of dementia. The results of this study are in contrast to previous studies, where South Asian carers perceived dementia as being possessed by evil spirits or God's punishment for previous life's sins; this study reveals that Bangladeshi family carers believed dementia was a medical condition. Unlike earlier South Asian studies, however, all family carers in this study also believed that there was no stigma attached to dementia., Conclusions: Further research is warranted to investigate the religious beliefs, familism, and interpersonal motives as theoretical perspectives to explain how Bangladeshi family carers negotiate and construct their caregiving roles for their relatives with dementia., (© 2019 John Wiley & Sons, Ltd.)

Older adults are at increased risk of pressure injuries (PIs) due to age‐related changes. Traditionally, PI knowledge and education have been delivered in hospitals and residential aged care facilities, however, there remains a critical gap in understanding how PI knowledge on prevention and management is shared with older adults and their carers living in the community. We aimed to describe the nature and characteristics of structured and unstructured PI education programs available to community‐dwelling older adults and their carers. As coping review was undertaken. We searched five databases: CINAHL, Medline, Scopus, Cochrane Library and ProQuest from 2009 to August 2023. The review was guided by Arksey and O'Malley's six‐step framework and adhered to the PRISMA‐ScR guidelines. It included primary peer‐reviewed papers published in English, which focus on PI education for older adults and/or their carers living in community settings. Data extraction was organised in a table, and findings presented as a narrative summary. One‐hundred and thirty‐six papers were screened and four included in the review. Results indicate that consideration was placed on literacy levels and cognitive status of older adults and their carers when designing PI education materials. Educational materials such as leaflets/brochures, in‐person training sessions or a combination of both were used. However, duration of these interventions varied, lasting for 1–4 weeks while others were completed over 12 months. Some improvements in PI knowledge such as how to treat PI, dietary requirements and importance of mobility were noted. However, information retention and its translation into effective long‐term behaviour change remained unclear. In conclusion, adopting a multifaceted educational approach increases the effectiveness of PI knowledge translation. Continuous education, support and reinforcement on PIs over time are necessary when interacting with older adults and caregivers to ensure long‐term management and prevention success. Conversations on PIs should start at the primary care levels when older adults and carers are visiting their GP clinics and accessing support services for other healthcare needs. Understanding older adults' and carers' literacy levels, cognitive status and cultural background can assist clinicians in designing and delivering fit‐for‐purpose PI educational interventions that are accessible, relatable and effective in promoting knowledge transfer and behaviour change. Carers are vital conduits in the care continuum. These factors will lead to a more informed, collaborative and person‐centred approaches to PI management and prevention. [ABSTRACT FROM AUTHOR]

Family caregiving for those who suffer from Alzheimer's disease is an important but understudied area in Italian nursing. Population ageing and the existing burden of care for family caregivers indicate that there will be enormous pressure on families in the future to provide adequate and culturally appropriate care. This study attempted to redress this situation by examining anxiety and depression among 34 female Italian Alzheimer's caregivers over a total of 816 caregiving days. A descriptive, repeated measures design was used, using three instruments to survey caregiving: a General Questionnaire about Caregiving, the Spielberg State-Trait Anxiety Inventory and the Geriatric Depression Scale. Findings indicated that caregivers suffered high levels of anxiety (76%) and depression (42%). Statistical analyses showed that the anxiety and depression scores were positively correlated with hours of care, physical and psychological illness scores, and negatively correlated with level of education and time for leisure activities. However, no significant correlations were found with the Mini Mental State Examination scores, demonstrating that the burden of care is large, irrespective of the extent of mental impairment. Implications of the findings suggest that support and assistance given to Italian caregivers might be inadequate, particularly with respect to respite services and educational support. [ABSTRACT FROM AUTHOR]

Objective: To assess the mental health care system in Germany from the point of view of the federal association of family carers of people with mental illness. Method: Family carer involvement and perspective are discussed on the basis of available literature, questionnaire surveys and documents of carer organizations. Results: At the beginning of the reform movement the views of informal carers were not discussed. Since 1985 family carers have joined forces to express their views on needs of the severely mentally ill and their carers. Their aim is to point out deficits of the care system and to work towards improved care for their relatives with mental illness and changes in the mental health care system. Conclusion: In the reform process informal carers should receive support and be respected as experts and partners. [ABSTRACT FROM AUTHOR]

In this article, the author describes psychoanalytic therapist Louis W. Sander's new ways of exploring the child-caretaker relationship. Nearly two decades ago in pioneering work on newborn state organization, Sander studied the infant-caretaker relationship by describing each infant's uniquely characteristic regulatory patterns in the context of his or her particular and unique care taking environment. Sander's ideas about the infant-caregiver system are profound in their implications for the new way: to investigate and understand development.

Objectives: Culturally and linguistically diverse (CALD) communities experience widespread inequalities in dental care utilization. While, several studies have reported factors contributing to such inequalities, a synthesis of evidence is lacking for CALD carers. This review examined the barriers and facilitators to dental care utilization among CALD carers. Methods: Medline, CINAHL, ProQuest, Scopus and Web of Science were searched for dental utilization and related factors, without geographic limitations. An integrated mixed‐method design was adopted, where both qualitative and quantitative findings were combined into a single synthesis. Critical appraisal was conducted using JBI tools, and a Universal Health Coverage (UHC) framework guided the synthesis approach. Reliability and researcher triangulation occurred throughout the conduct of this review. Results: A total of 20 papers were included: qualitative (n = 8), quantitative (n = 8) and mixed method (n = 4). Studies were from Australia, Canada, South Korea, Trinidad and Tobago, United Kingdom and the United States. Three studies insufficiently reported confounding variables and nine qualitative papers lacked philosophical perspectives. Affordability was the foremost barrier at the system level, followed by psychosocial negative provider experiences and language/communication issues at the provider level. Cultural, knowledge, attitudes and beliefs were individual‐family level factors. Utilizing a UHC framework, the barriers and facilitators were aggregated at three levels; financial‐system, provider and individual‐family levels and illustrated in the rainbow model of CALD oral health. Conclusion: The review strengthens evidence for multilayered, system‐related policies and culturally sensitive provision of services for reducing oral healthcare inequalities in CALD carers. [ABSTRACT FROM AUTHOR]

This article examines the practices of folding paper swans by Filipina migrants employed as live-in caregivers for elderly, dying patients in Israel. These practices create a microsystem model of adjustment through precise, small-scale, and repetitive movements. This microsystem synchronizes a tripartite process: the swan's process of construction, the patient's process of decay, and the caregiver's process of self-creation. In the short term, the microsystem is sustained, but in the long term, the microsystem contains within it the seeds of its own self-destruction, as the patient eventually dies, the caregiver is reassigned to another patient or deported, and the swans are gifted. Therefore, the swan folding expands both medical anthropology understanding of caregiving as a ritual and the phenomenology of global caregivers who use immediately accessible materials-paper and glue-as an imaginative tool for ordering their daily experiences as dislocated and marginalized workers. [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]

Background: Transitions to long‐term care are challenging for individuals and often associated with a loss of autonomy. Positive experiences are noted, especially when decisions involve the individual in a person‐centred way which are respectful of the person's human rights. One approach which facilitates self‐determination during a transitional period is shared decision‐making, but there is a lack of clarity on the nature and extent of research evidence in this area. Objective: The purpose of this scoping review is to identify and document research related to shared decision‐making and transitioning to long‐term care. Methods: A comprehensive search in CINAHL, Medline and Psych‐info identified papers which included evidence of shared decision‐making during transitions to a long‐term care setting. The review following the JBI and PAGER framework for scoping reviews. Data were extracted, charted and analysed according to patterns, advances, gaps, research recommendations and evidence for practice. Results: Eighteen papers met the inclusion criteria. A body of knowledge was identified encompassing the pattern advancements in shared decision‐making during transitions to long‐term care, representing developments in both the evidence base and methodological approaches. Further patterns offer evidence of the facilitators and barriers experienced by the person, their families and the professional's involved. Conclusions: The evidence identified the complexity of such decision‐making with efforts to engage in shared decision‐making often constrained by the availability of resources, the skills of professionals and time. The findings recognise the need for partnership and person‐centred approaches to optimise transitions. The review demonstrates evidence of approaches that can inform future practice and research to support all adult populations who may be faced with a transitional decision to actively participate in decision‐making. [ABSTRACT FROM AUTHOR]

Aims and Objectives: The overall aim of this paper is to provide practical insight into the way that professionals caring for a person with motor neurone disease (MND) can recognise, respect and respond to that person's temporality; that is, the person that they have been, that they are now and that they will be in the future. Background: MND is an umbrella term for a group of four rare, devastating neurodegenerative terminal diseases of middle/later life. Previously, we have acknowledged the importance of different time periods in the trajectory of MND as an illness, for example, during the diagnosis stage through to end of life and decision‐making at that time. Living with MND can cause anxiety at all stages of the disease trajectory especially as it can be difficult for people living with MND to communicate their desires and concerns to professionals and carers. It is important that professionals continue to provide holistic care throughout the illness trajectory and the aim of this paper is to explore past research about caring for someone with MND in relation to the concept of person‐centred care. Method: The paper is based on the concatenated exploration of the findings of a hermeneutic phenomenological project. Thus, this discursive paper links elements/studies which have been published previously to develop a model of person‐centred care for people with MND which recognises and respects their temporality. Conclusions: We suggest MND has a significant impact on a person's lifeworld. The proposed person‐centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that: a person is acknowledged as more than a 'patient with MND' and that a professional is providing person‐centred care based on individuality of the person, through a temporal lens. This requires a collaborative approach between the person, others and professionals. Such person‐centred care, focused on individuality, may prevent a person experiencing life in crisis and suffering towards the end of life. [ABSTRACT FROM AUTHOR]

Introduction: Patient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research. Methods: We searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full‐text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format. Results: We screened 22,009 titles/abstract, reviewed 375 full‐text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co‐design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI. Conclusions: Results of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes. Patient or Public Contribution: Two patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co‐authors of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co‐design Forward with Dementia—Social Care, a resource and information website supporting people receiving a dementia diagnosis. Methods: The PPIE partnership was set up in four stages: 1–identifying communities that have been under‐represented from PPIE in dementia research; 2—recruiting PPIE partners from these communities; 3—supporting PPIE partners to become confident to undertake their research roles and 4—undertaking research co‐design activities in an equitable fashion. Results: To address under‐representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. Conclusion: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co‐design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co‐design of research outputs that reflect the diversity and complexity of UK contemporary society. Patient or Public Contribution: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co‐authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co‐authors. [ABSTRACT FROM AUTHOR]

Background Aims Methods Main Contribution Conclusions WHAT THIS PAPER ADDS What is already known on the subject What this paper adds to existing knowledge What are the clinical implications of this work? Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders (RNDDs). Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments.This systematic review offers (1) a description of parent‐reported communication measures and (2) evidence for their psychometric properties, in RNDDs.The systematic review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO; CRD42022334649). MEDLINE (Ovid), Embase, PsychINFO, Web of Science, CINAHL Plus, Cochrane Library, ClinicalTrials.gov, the Australian New Zealand Clinical Trials Registry were searched from inception to August 2023. Methodological assessment of quality was completed using the COnsensus‐based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Parent‐reported measures used in observational studies and clinical trials were identified. Data on utility, reliability and validity for RNDDs were extracted.Sixteen parent‐reported communication measures were used in RNDD research, the Vineland Adaptive Behavior Scales being most commonly used. Validation data in RNDDs were identified for six of these measures. Limitations related to sample size or the scope of psychometric testing.Many communication measures have been used for RNDDs but there are few data validating their use. Valid and reliable methods of measuring communication in persons with RNDDs is a priority for future high‐quality clinical trials. Communication is a critical domain for families with a child with a rare neurodevelopmental disorder (RNDD). Validated outcome measures are essential for accurate evaluation and interpretation of responses to treatments in clinical trials. We identified 16 parent‐reported communication measures that have been used with RNDDs, but only six measures had validation data for at least one RNDD. High quality evidence is accumulating, with all validation studies in this review published between 2020 to 2023. Modifications of existing measures may be required to assess communication for RNDDs. This systematic review catalogues the available psychometric data for communication measures and indicates an ongoing need for new validation studies to ensure they are fit‐for‐purpose for upcoming clinical trials in RNDDs. This review will inform the selection of communication measures for clinical trials and research studies. [ABSTRACT FROM AUTHOR]

The criminalization of young women in care remains an important practice and policy issue in England despite 2018 national guidance and the subsequent development of local authority protocols to reduce the criminalization of care‐experienced young people. This paper contributes to the emerging research on young women whose behaviour challenges professionals, through secondary analysis of case file data and narrative interviews with 24 care‐experienced young women from a national project on care and offending. Analysis focused on young women's pathways through the care, justice and education systems and identified five domains within young women's lives where available risk or resilience factors were significant in directing young women towards prosocial opportunities, to new types of victimization or to criminalization and offending. These domains consisted of placements and caregiver relationships; partner relationships; pregnancy and motherhood; participation in education; and the transition to adulthood through leaving care. The paper concludes with implications for practice for professionals working with young women, in particular emphasizing that how the care, justice and education systems respond to young women can contribute to negative pathways or transform them. [ABSTRACT FROM AUTHOR]

Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Background: Training parents to implement language and communication intervention strategies is an effective approach to promote language development for children with language delay. Aims: This study introduces an online parent training program conducted in Hubei province, China, which was designed to help parents of language‐delayed children with a diagnosis of autism spectrum disorder (ASD), developmental language disorder (DLD) or global developmental delay (GDD) apply language intervention strategies into daily interactions and promote their children's language development at home. Methods & Procedures: The Bethel Hearing and Speaking Training Center Family Training for Early Communication & Language Development (Bethel Family Training Program, BFT) (Bethel HSTC, 2020) was designed to improve the language and communication skills for children with language delay in a naturalistic way. The caregivers (including parents, grandparents and other main caregivers) participated in an 8‐h online program, including lectures on milestones in child language development, common misunderstandings of child language development, and three basic family language intervention strategies ('Looking together, playing together, and talking together') incorporating active learning through video analysis and discussion. Tongji Hospital in Hubei then continued with 3 months of online home intervention monitoring to all the caregivers via weekly online Q&As led by BFT certified speech therapists' team. The Gesell Developmental Schedules (GDS) was carried out before the online parent training program and after the 3‐month online home intervention monitoring. Outcomes & Results: 146 families whose children aged 12–68 months with language delay participated in the online training program. The results of the GDS assessments conducted before and after the program showed that not only did the developmental quotient (DQ) of language improve, but so did the DQ of social behaviour and adaptive behaviour (p < 0.001). There is no between‐group difference in the application of three strategies between the ASD group and the DLD or GDD group (p > 0.05). Furthermore, both caregivers' ability to apply 'looking together, playing together, talking together' strategies and the effective interaction time played important roles in improving the child's language abilities. Conclusion & Implications: The online parent training focusing on improving daily interaction with children through speech–language stimulation strategies promoted the development of language skills. It is an economic and practical approach for children with language delay who have limited access to local language intervention programs. WHAT THIS PAPER ADDS: What is already known on the subject: Parent‐implemented language intervention is an effective approach at improving children's language development. Telepractice is an appropriate model of service delivery for audiologists and speech–language therapists and may be the primary mode of service delivery or may supplement in‐person services. What this paper adds to the existing knowledge: This paper explores the effectiveness of an online parent training program and provides new evidence that online training on language support strategies (looking together, playing together, talking together) followed by home intervention monitoring works for Mandarin‐speaking children and it is equally effective for children with ASD and non‐ASD diagnosis. What are the potential or actual clinical implications of this work?: Developmental behavioural paediatricians and speech–language therapists in countries and areas that lack sufficient training resource for every child will have the option to deliver parent training and home intervention monitoring online, which will save time and cost considerably while offering convenience. [ABSTRACT FROM AUTHOR]

This paper proposes connection abstract theory as a detailed abstract formulation of the volitional elements of John Bowlby's theory of child attachment and its expansion to include adult relationships. Connection abstract theory is a formal statement of causal connections within and between attachment and caregiving systems. It is so‐called to give an unambiguous name to the attachment–caregiving relationship. The analysis addresses some limitations traceable to the cultural background within which Bowlbian theory was developed. This paper rethinks these limitations by conceptualizing the emotional motivations for attachment and caregiving. In so doing, it goes beyond individual differences to focus on microfoundations of normative attachment and caregiving processes and expands the potential activators of attachment. Connection abstract theory asserts that caring is the emotion that motivates the caregiving system and that trust is the emotion that motivates the attachment system. [ABSTRACT FROM AUTHOR]

Background: The present study aims to summarise current knowledge and identify gaps in knowledge and research regarding experience, decision‐making and information needs around parenteral nutrition, among people with advanced cancer, and their carers. Methods: This review was informed by previous methods and guidance on conducting and reporting scoping reviews. A literature search was conducted in March 2021 using Embase, Medline, CINAHL, Google and Web of Science to identify studies that examined the experience, decision‐making process and information needs of adults with advanced cancer, and their carers, who were making decisions around commencing and discontinuing parenteral nutrition. There were no date limitations, although only papers published in English were included. Results: Of the 588 papers identified, 12 papers, all qualitative, met the eligibility criteria. Despite the reported negative aspects of home parenteral nutrition, patients and carers felt the benefits outweighed these. There was variability in whether patients and carers felt involved in decisions around commencing parenteral nutrition. No studies specifically addressed information needs. Conclusions: Research is required to explore the information that patients with advanced cancer, and their carers, need to facilitate their decision‐making around commencing and discontinuing parenteral nutrition. We recommend the development of processes for obtaining written informed consent from patients commencing parenteral nutrition to ensure that core topics are discussed on initiation, enabling patients and carers to make informed decisions. Additionally, we recommend development of a national framework to inform patients and carers of the whole discharge process on PN from decision‐making to discontinuing PN. Key points: Carers would like to receive more information around home parenteral nutrition.No studies have specifically explored the information needs of patients with advanced cancer and their carers making decisions around parenteral nutrition.The best ways to communicate information around parenteral nutrition to patients and carers are unknown.Patients should be asked if they wish to involve a carer in decision‐making.Reasons for stopping parenteral nutrition are not routinely discussed with patients.The rationale for stopping parenteral nutrition should be discussed at its initiation.We recommend the development of procedures for obtaining written informed consent from patients commencing parenteral nutrition.We recommend the development of a national, standardised framework outlining the discharge process for patients with advanced cancer on home parenteral nutrition.Research is required to explore the information that patients with advanced cancer, and their carers, need to facilitate their decision‐making around commencing and discontinuing parenteral nutrition. [ABSTRACT FROM AUTHOR]

Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members. [ABSTRACT FROM AUTHOR]

Objectives: To describe and explain the outcomes of community dementia friendly initiatives (DFIs) for people with dementia and their caregivers to inform the development and tailoring of DFIs. Methods: Literature searches on DFIs were performed through two systematic online database searches of PubMed, Embase, ASSIA, CINAHL and Google scholar. Papers were only included if they evaluated outcomes using empirical data from people with dementia or caregivers. Data collection and analysis were guided by the categorization in the DEM‐FACT taxonomy and RAMESES guidelines for realist reviews. Results: Of 7154 records identified, 22 papers were included with qualitative, mixed method and quantitative study designs. The synthesis led to a description of programme theories addressing caring, stimulating and activating communities. Outcomes for people with dementia and caregivers included having contact with others, enjoyment and decrease of stress and, lastly, support. This synthesis also indicated how people with dementia participated in a specific role in DFIs, such as patient, team member or active citizen. Conclusions: DFIs generate different outcomes for people with dementia and caregivers, depending on the kind of initiative and the specific role for people with dementia. These findings could be a catalyst for initiation and further development of DFIs in a dementia friendly community (DFC). This draws attention to the multiple aspects of DFCs and supports reflection on their essential principles. Key points: This is the first synthesis of the outcomes and mechanisms of dementia friendly initiatives (DFIs) using studies with empirical data from the perspective of people with dementia or caregivers.DFIs generate different outcomes for both people with dementia and caregivers.DFIs have different outcomes for people with dementia participating in different specific roles (i.e. patient, team member or active citizen).DFI outcomes according to people with dementia and caregivers support both the practical development and research of how dementia friendly communities (DFCs) succeed in fulfilling their purpose. [ABSTRACT FROM AUTHOR]

Aim: Access to timely treatment is key to early intervention in psychosis. Despite this, barriers to treatment exist. In this review, we aimed to understand the structural barriers that patients and caregivers face in help‐seeking for first‐episode psychosis, and the recommendations provided to address these. Methods: We conducted a systematic review (PROSPERO: CRD42021274609) of qualitative studies reporting structural barriers to help‐seeking from the patient or caregiver perspective. Searches were performed in September 2023, restricted to studies published from 2001. Study quality was appraised using Critical Appraisal Skills Programme. Data were analysed using thematic synthesis. Results: Nineteen papers from 11 countries were included. Across all papers, participants reported experiencing structural barriers to receiving healthcare. For many patients and caregivers, the process of accessing healthcare is complex. Access requires knowledge and resources from parents, caregivers and healthcare providers, yet too often there is a misalignment between patients' needs and service resources. Expertise amongst healthcare providers vary and some patients and caregivers experience negative encounters in healthcare. Patients highlighted earlier caregiver involvement and greater peer support as potential routes for improvement. Conclusion: Patients and caregivers face multiple structural barriers, with legislative practices that discourage family involvement, and healthcare and transport costs found to be particularly problematic. Understanding these barriers can facilitate the co‐design of both new and existing services to provide easier access for patients and caregivers. Further research is needed focusing not only on the perspectives of patients and caregivers who have accessed professional help but also crucially on those who have not. [ABSTRACT FROM AUTHOR]

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. [ABSTRACT FROM AUTHOR]

Objective: This article addresses the persistent challenge of Delayed Hospital Discharge (DHD) and aims to provide a comprehensive overview, synthesis, and actionable, sustainable plan based on the synthesis of the systematic review articles spanning the past 24 years. Our research aims to comprehensively examine DHD, identifying its primary causes and emphasizing the significance of effective communication and management in healthcare settings. Methods: We conducted the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐ScR) method for synthesizing findings from 23 review papers published over the last two decades, encompassing over 700 studies. In addition, we employed a practical and comprehensive framework to tackle DHD. Rooted in Linderman's model, our approach focused on continuous process improvement (CPI), which highlights senior management commitment, technical/administrative support, and social/transitional care. Our proposed CPI method comprised several stages: planning, implementation, data analysis, and adaptation, all contributing to continuous improvement in healthcare delivery. This method provided valuable insights and recommendations for addressing DHD challenges. Findings: Our DHD analysis revealed crucial insights across multiple dimensions. Firstly, examining causes and interventions uncovered issues such as limited discharge destinations, signaling unsustainable solutions, and inefficient care coordination. The second aspect explored the patient and caregiver experience, emphasizing challenges linked to staff uncertainty and negative physical environments, with notable attention to the underexplored area of caregiver experience. The third theme explored organizational and individual factors, including cognitive impairment and socioeconomic influences. The findings emphasized the importance of incorporating patients' data, recognizing its complexity and current avoidance. Finally, the role of transitional and social care and financial strategies was scrutinized, emphasizing the need for multicomponent, context‐specific interventions to address DHD effectively. Conclusion: This study addresses gaps in the literature, challenges prevailing solutions, and offers practical pathways for reducing DHD, contributing significantly to healthcare quality and patient outcomes. The synthesis introduces the vital CPI stage, enhancing Linderman's work and providing a pragmatic framework to eradicate delayed discharge. Future efforts will address practitioner consultations to enhance perspectives and further enrich the study. Patient or Public Contribution: Our scoping review synthesizes and analyzes existing systematic review articles and emphasizes offering practical, actionable solutions. While our approach does not directly engage patients, it strategically focuses on extracting insights from the literature to create a CPI framework. This unique aspect is intentionally designed to yield tangible benefits for patients, service users, caregivers, and the public. Our actionable recommendations aim to improve hospital discharge processes for better healthcare outcomes and experiences. This detailed analysis goes beyond theoretical considerations and provides a practical guide to improve healthcare practices and policies. [ABSTRACT FROM AUTHOR]

Introduction: Those with severe and enduring mental ill health are at greater risk of long‐term physical health conditions and have a reduced life expectancy as a result. Multiple factors compound this health inequality, and the need for setting research priorities in this area is highlighted with physical and mental healthcare services being separate, and limited multimorbidity research. Methods: The aim of this exercise was to work in partnership with healthcare professionals and carers, family, friends and individuals with lived experience of both mental and physical health conditions, to set research priorities to help people with mental health conditions to look after their physical health. The exercise was guided by the James Lind Alliance approach. For this, a steering group was set up, two surveys were completed and a final priority workshop was conducted. Results: This priority setting exercise guided by people's needs and lived experience has produced a set of well‐defined research topics. Initially, 555 research questions were suggested in the first survey, which were refined to 54 questions for the second survey. A priority setting workshop was then conducted to get the final 10 priorities. Conclusions: Taking these topics forward to improve services and treatment for both mental and physical ill health may in turn improve physical health and lessen the reduced life expectancy of those living with mental ill health. Patient or Public Contribution: This work was completed in collaboration with people who have lived experience of mental ill health and physical health conditions, as well as carers, family and friends. Their contribution has been significant for this work from piloting surveys, amending language used and educating the researchers and contributing to this paper. The initial work was completed with a steering group and continued with surveys and workshops. [ABSTRACT FROM AUTHOR]

Although adults are known to play an important role in young children's development, little work has focused on the enactive features of scaffolding in informal learning settings, and the embodied dynamics of intergenerational interaction. To address this gap, this paper undertakes a microinteractional analysis to examine intergenerational collaborative interaction in a science museum setting. The paper presents a fine‐grained moment‐by‐moment analysis of video‐recorded interaction of children and their adult carers around science‐themed objects. Taking an enactive cognition perspective, the analysis enables access to subtle shifts in interactants' perception, action, gesture, and movement to examine how young children engage with exhibits, and the role adult action plays in supporting young children's engagement with exhibits and developing ideas about science. Our findings demonstrate that intergenerational "embodied scaffolding" is instrumental in making "enactive potentialities" in the environment more accessible for children, thus deepening and enriching children's engagement with science. Adult action is central to revealing scientific dimensions of objects' interaction and relationships in ways that expose novel types of perception and action opportunities in shaping science experiences and meaning making. This has implications for science education practices since it foregrounds not only "doing" science, through active hands‐on activities, but also speaks to the interconnectedness between senses and the role of the body in thinking. Drawing on the findings, this paper also offers design implications for informal science learning environments. [ABSTRACT FROM AUTHOR]

Aim: To describe caregiver experiences, perceptions, and device preferences between a modified ride‐on car (MROC) and an Explorer Mini, including perceived changes in participation, barriers, and benefits for young children with cerebral palsy (CP) classified in Gross Motor Function Classification System (GMFCS) level V. Method: A subset of data were analyzed from a larger multisite study. Semi‐structured interviews were conducted with 10 caregivers of children with CP in GMFCS level V across a 16‐week trial with two mobility devices. Each interview was audio‐recorded, transcribed verbatim, and analysed using constant comparison methods. Results: Seven of 10 caregivers preferred the Explorer Mini over the MROC. Four themes emerged. One related to the perceived benefits and barriers of each device (ease and convenience is essential) and three related to perceived changes in participation: (1) autonomy enacted through mobility; (2) belonging and being present; and (3) participation recognized as an area of growth. Interpretation: Despite limited consideration of powered mobility for this population, caregivers of children in GMFCS level V reported similar benefits and barriers compared to children in other GMFCS levels shown in the literature. Particularly, caregivers perceived positive changes in their child's participation and recognized the ability for continued improvements in participation when using powered mobility. What this paper adds: Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research.Despite this, caregivers reported positive experiences for their children.Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children.Most caregivers preferred the Explorer Mini over the modified ride‐on car but recognized that both devices had benefits and barriers to use. What this paper adds: Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research.Despite this, caregivers reported positive experiences for their children.Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children.Most caregivers preferred the Explorer Mini over the modified ride‐on car but recognized that both devices had benefits and barriers to use. This original article is commented on by Jahan and Islam on pages 276–277 of this issue. [ABSTRACT FROM AUTHOR]

Background and Aims: Hypospadias, a congenital anomaly, can have long‐term effects on sexual, urinary, and reproductive functions, making proper postoperative care essential for desirable outcomes, which could be facilitated through a mobile application for diseases with long‐term complications. The aim of this study was to investigate the data and functional requirements or minimum data set of a postoperative education mobile application for caregivers of children with hypospadias. Methods: A literature review of papers published until April 2023 using Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) statement was conducted to determine the data and functional requirements of a mobile application that provides postoperative education to caregivers of children with congenital hypospadias. Based on the results, a questionnaire was prepared, and its content validity and reliability were evaluated by CVI and CVR. Additionally, data was examined by 30 residents, specialists, and subspecialists in pediatric surgery using the Delphi approach. Results: The study identified 28 data elements in three main categories: demographic data, clinical data, and application function. Functional requirements of the mobile application were suggested for use in designing the application. Also, the most critical data elements included the definition of disease, the importance of treatment, surgical preparation, bandage, hygiene, symptoms and infection, bleeding, and emergency condition. Conclusion: The study will pave the way for developing postoperative educational applications for caregivers of children with congenital hypospadias. M‐Health app developers and clinician specialists can utilize these findings to design practical applications that assist caregivers in managing the care of hypospadias patients. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke aphasia tend to have smaller social networks, a higher risk of depression and poorer health‐related quality of life than those who do not have aphasia after stroke. Stroke‐specific or general rehabilitation programmes offered by community‐based organizations are commonly group‐based and involve discussions among group members with or without stroke. Research has shown that people with post‐stroke aphasia may be unable to participate fully in verbal sharing of experiences and exchange of thoughts. Aims: To explore the experiences of people with post‐stroke aphasia in relation to participating in group‐based rehabilitation programmes organized by community‐based organizations. Methods & Procedures: A qualitative design was adopted, including individual, semi‐structured interviews with 20 adults with post‐stroke aphasia recruited from community‐based rehabilitation centres and support groups. The participants had a mean age of 68.86 ± 13.54 years and a mean post‐stroke duration of 9.24 ± 7.72 years. They had participated in at least one group‐based rehabilitation programme organized by community‐based organizations in the past year. The participants were asked about their experiences of attending group‐based programme(s), thoughts and feelings while interacting with the facilitators and group members, and satisfaction with their participation. The interview data were thematically analysed. Outcomes & Results: Three themes were identified: (1) hurdles to active and fulfilling participation including the dominance of verbal sharing, short duration of the programme, being a minority in the group and accumulated negative experiences; (2) strategies adopted to improve participation including accepting a reduced speaking ability, having support from caregivers, and trying mobile apps to vocalize and supplement meanings; and (3) a preference for certain group conditions including receiving invitations by staff with whom they were familiar, groups that are led by experienced facilitators, a large or small group, the dominance of non‐verbal activities, and inclusion of only people with post‐stroke aphasia. Conclusions & Implications: The findings showed that people with post‐stroke aphasia experience difficulties participating more actively in group‐based rehabilitation programmes due to hurdles in terms of the structure and format of the programmes and accumulation of negative experiences. Facilitating positive group experiences for these people with innovative methods, such as using technology and providing professional and standby support, would be helpful. Longer sessions with smaller groups, exclusively including people with post‐stroke aphasia and involving more non‐verbal activities to help them express feelings, are suggested to optimize the benefits they derive from these group‐based programmes. WHAT THIS PAPER ADDS: What is already known on the subject: Stroke‐specific or general group‐based rehabilitation programmes are commonly offered by community‐based organizations to support the recovery of people with or without stroke. However, some people with post‐stroke aphasia may be unable to participate fully in verbal sharing of experiences and exchange of thoughts during these group‐based programmes, which can limit the benefits they derive from these programmes. What this paper adds to existing knowledge: This study explored the experiences of people with post‐stroke aphasia in relation to participating in group‐based rehabilitation programmes not specifically designed for people with stroke‐induced aphasia organized by community‐based organizations. The findings provide an insight into how these people participate in groups, their thoughts and feelings during interactions with the facilitators and group members, their satisfaction with their level of participation, and the characteristics of the groups they prefer to join. What are the potential or actual clinical implications of this work?: People with post‐stroke aphasia experience difficulties participating more actively in group‐based programmes due to hurdles in terms of the structure and format of the group‐based programmes and accumulation of negative experiences contributing to decreased motivation to participating in groups. More positive group experiences can be fostered by adopting longer sessions with smaller groups that exclusively include people with post‐stroke aphasia and involve more non‐verbal activities to help them express their feelings. Communication partner training for facilitators and the use of technology to support communication are suggested to promote active and fulfilling participation of the people with aphasia in group‐based programmes. [ABSTRACT FROM AUTHOR]

This paper contributes to the scarce literature on factors affecting EdTech use in households. These factors were considered through exploratory mixed‐methods analyses of cross‐sectional data on Kenyan girls and caregivers, captured during the COVID‐19 pandemic. Quantitative analysis of the child dataset (n = 544) suggested the importance of both structural factors—such as technology hardware availability—and non‐structural factors—including caregiver permission. Findings were supported by a thematic analysis of interview data from girls' caregivers (n = 58), which emphasised the role they play in girls' use of EdTech. Interviews also highlighted numerous caregiver concerns with EdTech, related to the relevance and rigour of educational content, the possibility of children accessing age‐inappropriate material and child health (especially eyesight). Policy makers could alleviate these concerns by providing guidance on EdTech use and clearly signalling their approval of verified initiatives. Practitioner notesWhat is already known about this topicEdTech can benefit girls' education, yet there are various barriers to it being used.Existing research shows clearly that EdTech use can be impeded by structural factors (eg, hardware ownership).However, we find insufficient empirical evidence on the role of non‐structural or behavioural factors.What this paper addsThis paper addresses this gap, using a mixed‐methods approach to explore the influence of 33 different measures (including non‐structural factors) that could affect the number of hours girls spend using EdTech at home.Findings from a quantitative sample of girls (n = 544) and a qualitative sample of girls' caregivers (n = 58) highlighted the importance of non‐structural factors, especially caregiver permission.The variable most strongly associated with girls' EdTech usage in our selected quantitative model concerned whether this was sanctioned by their caregivers.Our qualitative data suggested why caregiver permission to use EdTech might be withheld: caregivers emphasised perceived concerns about the risks and rigour of EdTech.Implications for practice and/or policyOur findings suggest the viability of policy interventions that provide EdTech guidance to caregivers.Caregivers uncertain about EdTech could be reassured of the appropriateness of verified initiatives, while those already convinced might be aided in their attempts to support EdTech learning.Such guidance could provide a low‐cost means of further exploiting the benefits that household EdTech learning can provide. [ABSTRACT FROM AUTHOR]

Graphic elicitation, an arts‐based method that focuses on participant‐led drawing activities, is often conducted with the researcher in situ and discussed in an interview setting, either during or after drawing. However, the COVID‐19 pandemic and the subsequent lockdowns have meant that using graphic elicitation in its current form required a re‐evaluation. Reflecting on a research project that undertook graphic elicitation remotely, this paper considers the emotional affordance and disruption management of the method in caregiver research. While informal caregiving may be an emotionally fraught topic for the participants, we demonstrate how graphic elicitation explores emotions and experiences with sensitivity and care. Furthermore, we show that graphic elicitation enabled us to acknowledge the pandemic but maintain focus on caregiving itself. The caregivers were responsive to the method and found it rewarding and insightful, albeit with some initial hesitancy and ingrained perceptions of arts‐based outputs. Through our discussions, we show the potential for remote graphic elicitation in geography as a method to explore potentially sensitive, emotionally charged topics like caregiving. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review.Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

The article presents abstracts of medical research. They include "Health Care Transitions and Incident Feeding Tube Insertion Among Persons with Advanced Cognitive Impairment: Lost in Transition," "Changes in Quality of Life over Time among Older Persons with Advanced Illness" and "Patient and Caregiver Quality of Life in Alzheimer's Disease in Relation to Cognitive Severity."

Childhood malnutrition, which is endemic in rural areas of low‐income countries, leads to a host of deleterious outcomes such as poor cognitive development, low educational attainment and lower lifetime wages. Promoting the consumption of eggs among young children has emerged as a promising strategy to combat childhood malnutrition, though pathways to scale remain unclear. In this paper, we evaluate the impact of a social and behaviour change communication (SBCC) campaign combined with a program in which rural families purchased chickens on credit (poultry + SBCC; n = 769) relative to an arm in which families only received the poultry intervention (poultry only; n = 750), using a difference‐in‐difference estimation strategy with propensity score matching. The SBCC consisted of radio messages, in‐person training, text message reminders and posters. We found a relatively modest but statistically significant increase in the number of times per week respondents in the poultry + SBCC arm reported feeding eggs to children of 0.28 (p = 0.02) compared to the poultry‐only arm. The increase in egg feeding, however, was more pronounced for boys (0.42, p < 0.01) than for girls (0.14, p = 0.26). In addition, the campaign increased egg feeding more for those who were already feeding eggs to children (0.63, p < 0.01) than those who were not engaging in those practices at baseline (0.26, p < 0.01). However, the difference in these differences was not statistically significant. Future campaigns should ensure higher saturation of messaging and include specific messaging around the importance of feeding girls as well as boys. Campaigns seeking to scale up egg feeding quickly could potentially target the easier‐to‐reach segment of caregivers who already occasionally feed eggs to children though these might not be the neediest group. Key messages: A multi‐pronged social and behaviour change communication campaign increased egg consumption among young children in rural Rwanda.While the egg consumption gains were modest, the social behaviour change campaign was not fully implemented due to COVID‐19 and other challenges, so it is possible that a more fully implemented campaign could achieve greater impacts.Effects appeared to be most pronounced for boys and those who were already feeding eggs to children. [ABSTRACT FROM AUTHOR]

With the large ongoing number of aged people and Alzheimer's disease (AD) patients worldwide, unpaid caregivers have become the primary sources of their daily caregiving. Alzheimer's family caregivers often suffer from physical and mental morbidities owing to various reasons. The aims of this paper were to develop alternate methods to understand the transition properties, the dynamic change, and the long‐run behavior of AD caregivers' stress levels, by assuming their transition to the next level only depends on the duration of the current stress level. In this paper, we modeled the transition rates in the semi‐Markov Process with log‐logistic hazard functions. We assumed the transition rates were non‐monotonic over time and the scale of transition rates depended on covariates. We also extended the uniform accelerated expansion to calculate the long‐run probability distribution of stress levels while adjusting for multiple covariates. The proposed methods were evaluated through an empirical study. The application results showed that all the transition rates of caregivers' stress levels were right skewed. Care recipients' baseline age was significantly associated with the transitions. The long‐run probability of severe state was slightly higher, implying a prolonged recovery time for severe stress patients. [ABSTRACT FROM AUTHOR]

Background: Communication difficulties are common in people with dementia, and often present from an early stage. However, direct treatment options for people with dementia that positively influence their daily communication are scarce. Aims: To evaluate the potential impact and feasibility of a personalized logopaedic intervention. Methods & Procedures: A total of 40 community‐dwelling persons with dementia and their caregivers were recruited. Five experienced speech and language therapists (SLTs) delivered the six‐session Com‐mens intervention at home. Com‐mens aims to improve positive communication between people with dementia and their primary caregivers and comprises five elements: interactive history‐taking, dynamic observational assessment, education about the consequences of dementia on communication, development and use of personalized communication tools, use motivational, and person‐centred strategies by the SLT. We conducted a single‐group mixed‐methods pilot study with five measurements: baseline, directly after intervention, and at 3, 6 and 9 months follow‐up. Semi‐structured interviews and questionnaires for Experienced Communication in Dementia, quality of life, psychological well‐being and caregiver burden were conducted. Process evaluation was performed by interviewing participants, drop‐outs, SLTs and other stakeholders. Outcomes & Results: A total of 32 dyads completed the intervention. Repeated measures analyses revealed no significant changes over time. In the interviews, participants reported a positive impact on their feelings, increased communication skills and better coping with the diagnosis. Participants would recommend the intervention to others. Facilitators were timely delivery, personalized content and adequate reimbursement. Barriers were unfamiliarity with Com‐mens among referrers, an overburdened caregiver or disrupted family relationships. Conclusions & Implications: This newly developed logopaedic intervention is feasible and has a perceived positive impact on both people with dementia and their caregivers, which is confirmed by a stable pattern over a period of 1 year. Future comparative studies are needed to test the effectiveness of personalized interventions in this patient population. What this paper adds: What is already known on the subject?: SLTs are experts in the field of communication, but even though communication problems are common between people with dementia and their caregivers, there is a lack of logopaedic guidelines and materials for the direct treatment for this population. Interventions that are available either focus on (professional) caregivers only or aim to enhance cognitive functioning and do not target on joined communication. What this paper adds to the existing knowledge?: A newly developed intervention called Com‐mens can be provided by trained SLTs and takes an average of six 1‐h sessions. The intervention is perceived to be valuable and feasible for people with dementia and their caregivers, by the participants themselves, as well as by healthcare professionals and other stakeholders. What are the potential or actual clinical implications of this work?: Dissemination of this intervention will give SLTs skills, tools and materials to provide meaningful care to home‐dwelling persons with dementia and their caregivers. Also, persons with dementia and their caregivers will receive education and materials that can help them increase their understanding of communication problems, enhance their communication skills and better cope with the communication problems that result from dementia. We consider the Com‐mens intervention to be a valuable addition to the field of speech language therapy and dementia. [ABSTRACT FROM AUTHOR]

Background: Early in development, caregivers' object labelling contributes to children's word learning. Language development is a bi‐directional process, and differences in joint engagement (JE) and language among children with developmental disabilities such as autism spectrum disorder (ASD) may provide caregivers varying contexts and opportunities to provide object labels. However, potential variation in caregivers' production of object labels and its relation to language development remain relatively unexplored among toddlers with ASD. Aims: This study characterized the structural and functional features of object labels produced by parents of children with typical (TL) or elevated likelihood (EL) of ASD during naturalistic toy play. We examined features of object labels within two JE contexts, supported and coordinated JE, which are differentiated by a child's use of eye contact, as well as their relations with concurrent and future child language skills. Methods & Procedures: The present study included 55 (TL = 12, EL = 43) children who completed a naturalistic parent–child interaction in the home at 18 months of age. Children's expressive and receptive language was assessed at 18, 24 and 36 months. At 36 months, EL children were assessed for ASD and classified as either EL‐No Diagnosis, EL‐Language Delay or EL‐ASD. Videos of interactions were divided into discrete engagement states, including supported and coordinated JE. All parent speech was transcribed and coded to capture structural (types, tokens, mean length of utterance (MLU), sentence position) and functional (follow‐in comments, directives, lead‐in labels) features of object labels as well as parent prompts for the child to produce a label. Outcomes & Results: Parents of toddlers across outcome groups labelled objects at similar rates within each engagement state. However, parents of EL‐ASD children provided the lowest rates of prompts for labels in supported JE and the highest rate of labels as the final word of an utterance (sentence‐final position) in coordinated JE. Additionally, parent prompts in supported JE were related to concurrent child expressive language. Labels in sentence‐final position were positively related to later language outcome when delivered in supported JE but were associated with poorer language outcomes when delivered in coordinated JE. Conclusions & Implications: Subtle differences in parent object labels across outcome groups demonstrate the role that child language and social engagement can play in influencing parent input and the cascading impact of this input on language development. WHAT THIS PAPER ADDS: What is already known on this subject: Variations in caregiver object labelling can impact child language development. However, child characteristics such as language ability also actively shape the input caregivers provide, demonstrating the bi‐directionality of language development. What this paper adds to existing knowledge: The present study demonstrates that characteristics of the engagement context in which a label is delivered may be important for understanding how object labelling relates to child language acquisition and whether this relation varies for children who face challenges in language learning. What are the potential or actual clinical implications of this work?: As child differences in social engagement emerge, parents may be more attuned to moments their children are engaging with eye contact. Caregiver‐mediated interventions might consider strategies that guide caregivers in recognizing engagement without eye contact as a similarly meaningful opportunity for learning and encourage the use of rich input within these moments. [ABSTRACT FROM AUTHOR]