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Background: Eating, drinking and swallowing (EDS) difficulties are important to identify early. Awareness of EDS changes starts with those living with dementia or their family carers. However, little is known about early identification from the perspective of people with dementia. Aim: The aim of this study was to understand the experience of EDS by people living with dementia in their own home. Methods: Published evidence pertaining to EDS difficulties in dementia was used to inform an online semi‐structured interview guide. Four people living with dementia and a third‐sector Empowerment Lead were invited to become co‐researchers. People living with dementia and their carers were invited to be interviewed. We enquired about their past and present experiences, and future expected changes in EDS, information needs, opinions on early problem identification, and lifestyle modifications following onset of EDS difficulty. Narrative concepts of heroes and villains in their 'stories' were identified. Responses were subjected to framework analysis informed by narrative enquiry. Results: Seven people living with dementia and five family carers were interviewed. The overarching theme was a 'missed connection' between EDS difficulty and dementia. Where EDS difficulties were identified, 'compensatory changes' and a need for 'access to information' were noted. Conclusions: The connection between potential EDS difficulties and a dementia diagnosis may not be made, even though EDS changes were recognised by people living with dementia and their family carers. This may be explained by behaviours that mask problems or allow individuals to cope or compensate. Reduced awareness may also be due to inadequate access to information and lack of specialist services. If the connection between dementia and EDS difficulty is missed it could further delay access to support services. WHAT THIS PAPER ADDS: What is already known on the subject: The prevalence of dementia is increasing and is expected to affect 9% of the population by 2040. EDS difficulties are common in people living with dementia and predispose to poorer outcomes. Better awareness of EDS changes early in the disease process of dementia or at preclinical stages can identify individuals at risk and allow for intervention prior to advanced EDS difficulties developing. What this paper adds to existing knowledge: This paper reports the perspective of people living with dementia and family carers and provides insights into experiences of EDS and the challenges faced and identifies commonalities. The connection between potential EDS difficulties and dementia is missed despite various changes reported by both people living with dementia and their family carers, who tend to make compensatory lifestyle changes without support. What are the potential or actual clinical implications of this work?: Lack of awareness of the connection between potential EDS difficulties and dementia may arise due to inadequate access to information to support people living with dementia and their family carers. Access to such information is needed and the quality assurance of information from reputable sources is important to people living with dementia. There is a need for greater service user awareness of signs of EDS difficulty and how to access specialist services. [ABSTRACT FROM AUTHOR]

Background: Public awareness of Developmental Language Disorder (DLD) is lower than other neurodevelopmental disorders, despite its high prevalence of 7.6%. This lower awareness means recruitment for DLD research studies is difficult. DLD is both underfunded and under‐researched, resulting in relatively limited research investigating individuals with DLD. Engage with Developmental Language Disorder (E‐DLD) is a response to these considerations. E‐DLD is the first international participant database of those affected by DLD. Parents of children with DLD under 16 and young people and adults over 16 from anywhere in the world can sign up to be a part of the E‐DLD. Aims: This paper aims to describe the families of children with DLD and adults with DLD in the database thus far. Methods & Procedures: E‐DLD members sign up via our website, reporting demographic characteristics as part of this procedure. We request all E‐DLD members subsequently fill in a yearly survey. The content of the yearly survey changes dependent on the age of the child, while the yearly survey for adults remains consistent. We measure a wide range of domains, such as speech and language therapy (SLT) support, school support, socialisation skills, and early developmental milestones for our youngest members, and health care support and mental well‐being measurements for our adults. We also collect parent and self‐reported reflections on strengths and challenges for the person with DLD using open‐ended questions and the Strengths and Difficulties Questionnaire. Outcomes & Results: The database currently consists of 196 parents of children with DLD and 20 individuals over the age of 16 with DLD or suspected DLD across a range of socioeconomic status (SES) backgrounds. Our initial results confirm that E‐DLD members meet the linguistic profile of DLD in relation to self‐ or parent‐rated language difficulties. Both children and adults show increased rates of psychosocial difficulties compared to established norms, consistent with past research on clinical samples of people with DLD. Conclusions & Implications: The findings indicate that a participant database for DLD research is feasible and useful. The rates of emotional, behavioural and sleep difficulties among the child probands are higher than reported rates amongst typically developing children. Initial data indicate that adults with DLD have poorer well‐being than their peers. The E‐DLD is a useful collection of data on those affected by DLD and is a promising method for connecting people with DLD with academic researchers. What This Paper Adds: What is already known on this subject: Developmental Language Disorder (DLD) is characterised by expressive and/or receptive language difficulties in the absence of another biomedical condition that could explain these difficulties. It is critically under‐researched and underfunded. As such, there is a lack of public awareness and difficulty recruiting sufficient sample sizes for DLD research studies. What this paper adds to existing knowledge: Engage with Developmental Language Disorder (E‐DLD) is the first international participant database of individuals with DLD. This paper provides a preliminary report on the profile of linguistic and psychosocial skills among the individuals on the database, adding to current understanding of DLD across age groups. What are the potential or actual clinical implications of this work?: Our aim is that the E‐DLD will provide much‐needed facilitation of research into DLD. E‐DLD will enable those with DLD and their families more readily to shape research agendas and to participate in studies that interest them. Families may be recruited into research that could directly translate to better clinical treatment of DLD. We also believe that the E‐DLD yearly survey holds potential to provide key information on the development and longitudinal experience of children and adults with DLD. [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]

Background: Communication and cognitive impairments are known barriers to shared decision‐making. Most people diagnosed with motor neurone disease (MND) will develop a motor speech impairment over the disease course. Some will develop cognitive, linguistic or behavioural disturbance. Despite this, the impact of communication and cognitive impairment on personal healthcare decision‐making in MND is not well known. Aims: This exploratory, longitudinal study aimed to capture the perspectives of people living with MND (plwMND) and family members on managing their healthcare with, or in anticipation of, a communication impairment. Methods & Procedures: Semi‐structured interviews and functional assessments were conducted with plwMND and family members over one to three time points between December 2017 and January 2020. Participants were recruited from a specialist MND clinic using a maximum variation sampling approach. Interview transcripts were analysed using trajectory data analysis: a matrix‐based approach for thematic analysis of longitudinal data. The study was underpinned by interpretive descriptive methodology. Outcomes & Results: A total of 19 plwMND with a range of MND phenotypes and 15 family members were recruited. Disease progression and participant withdrawal resulted in attrition, however 12 plwMND and seven family members participated at all three time points. Consistent cognitive screening was not feasible, which limited the opportunity to explore the impact of cognitive change. An overarching theme 'Communicating takes effort' was identified and illustrates the efforts required to compensate for, or circumnavigate, impairments to maintain involvement in healthcare. Assistance from family and accommodation from healthcare professionals (HCPs) was needed for ongoing engagement. Where plwMND were dependent on alternative communication devices, this assistance was essential and primarily carried out by family members. Despite these efforts, the quality, quantity and accuracy of communication were sometimes compromised. Participants equated good communication with receiving good healthcare, and some expressed anxiety in the anticipation of being unable to express their needs to healthcare workers. Conclusion & Implications: Communication impairment has a direct impact on healthcare involvement. This study demonstrates the effort required by plwMND and their carers to maintain or maximize ongoing involvement. This effort may not always be visible to HCPs. This information may prompt clinicians to consider the best ways to conduct clinical consultations to accommodate patients' abilities. Compromised communication experiences can be moderated by accommodations and support from HCPs and appropriate adjustments in the health system. Asking patients about their communication preferences and needs, allowing extra time and conducting multidisciplinary sessions are examples of such support. What this paper adds: What is already known on this subject?: Communication and cognitive impairments are known contributors to negative health outcomes and barriers to shared decision‐making generally. The existing literature in decision‐making in MND does not address the specific impact of these impairments on personal healthcare involvement for plwMND and their carers. What this paper adds to existing knowledge?: This paper reports the findings of a research project that interviewed 19 plwMND and 15 carers on one to three occasions over a 26‐month period to obtain their perspectives of the impact of communication on healthcare involvement. Whilst a priori the intention was to look at both communicative and cognitive decline, only the former was achieved. The effort and often 'invisible' activity undertaken to manage or maintain involvement in healthcare is identified. Communication impairment requires support and accommodation, otherwise healthcare involvement can be compromised. Results show participants may associate effective communication with good healthcare. What are the potential or actual clinical implications of the work?: Clinicians may wish to use these insights from plwMND and their carers to guide adjustments to their professional practice to maximize healthcare involvement for their patients. Tailored education for different healthcare groups is needed to improve understanding of MND‐related communication impairments and supportive strategies so that involvement in healthcare is not compromised. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube‐feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. Aims: To explore family members' experiences of living with a spouse with post‐stroke dysphagia. Methods & Procedures: This exploratory qualitative study used one‐to‐one semi‐structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio‐recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Outcomes & Results: Five spouses aged 70–93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. Conclusions & Implications: It is important to consider family members' perspectives as they often provide vital care to loved‐ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better‐targeted support. What this paper adds: What is already known on the subject: Informal caregivers, often spouses, play a vital role in supporting the health and well‐being of older people with health conditions. The presence of post‐stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge: Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem‐solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work?: Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality‐of‐life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well‐being and patient safety. [ABSTRACT FROM AUTHOR]

Background: Artificial nutrition and hydration (AN&H) may be provided to individuals in the home environment, and family caregivers are often involved in the management of this intervention. This experience can have multiple consequences for families. Aims: The aim of this meta‐ethnography is to explore and synthesize the personal experiences of family caregivers providing care to a person receiving home AN&H. Methods & Procedures: A comprehensive search of the literature was conducted without any time limitations applied. Seven stages of meta‐ethnography were followed. Public and patient involvement was incorporated into the development of the line of argument synthesis in this review. This review is reported following the eMERGe guidelines and it was registered in PROSPERO. Main Contribution: A total of 22 studies were included representing the experiences of 336 family caregivers. Two main themes emerged: (1) sink or swim, being thrown in at the deep end; and (2) professional support as a bedrock. The first theme represents the experiences from the very start of home AN&H when the family caregivers may be overwhelmed with the level of skills they have to acquire. With time, family caregivers perceived the benefits, but also the challenges, associated with managing home AN&H. If a person receiving home AN&H was able to continue with some oral intake, it had a positive impact on family caregivers' experiences. The second theme represents the influence of professional support on the lived experience of family caregivers managing home AN&H. This support should be individualized, comprehensive, and co‐created with the family caregiver and the person receiving home AN&H. Conclusions & Implications: This review concluded that caring for a person receiving home AN&H can be very challenging for family caregivers. Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to acquire skills, competence and confidence in this new role. Speech and language therapists are important members of this multidisciplinary team because they can facilitate a continuation of oral intake as appropriate. WHAT THIS PAPER ADDS: What is already known on the subject: AN&H has an impact not only on the person receiving it but also on the wider family and family caregivers. Healthcare professionals have a role in supporting people living with AN&H. What this paper adds to existing knowledge: This review presents a rigorous qualitative evidence synthesis that adheres fully to the eMERGe guidance for reporting of meta‐ethnography. Within this meta‐ethnography a current caregiver was consulted during the creation of the line of argument synthesis to provide a unique perspective to the review process. This review synthesized the current body of evidence that explores the lived experience of home AN&H (any type) for family caregivers, identifies where professional support is required and highlights current gaps. What are the potential or actual clinical implications of this work?: Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to adjust to living with home AN&H. This support assists people living with home AN&H in perceiving benefits and developing more positive experiences. Speech and language therapists are important members of the multidisciplinary team supporting individuals with home AN&H and their family caregivers as they can facilitate a continuation of oral intake as appropriate. [ABSTRACT FROM AUTHOR]

Background: Huntington's disease (HD) is a neurodegenerative disease characterized by a triad of motor, cognitive and psychological symptoms, leading to a gradual breakdown of communication skills. Few studies have investigated how people affected by HD and their professional caregivers, for example, medical doctors, physiotherapists and nurses, experience the patients' gradual loss of speech and language. Aims: To examine communication‐related experiences of patients and professional caregivers. Experiences with speech therapy and the use of augmentative and alternative communication aids (AAC) were also investigated. Methods & Procedures: Seven individuals with HD and seven professional caregivers were interviewed individually, using a semi‐structured interview guide. Transcripts were analysed using a conventional content analysis, and the results presented in three main categories. Outcomes & Results: Most individuals with HD were aware of having communication difficulties, struggling with understanding others as well as being understood. This was confirmed by professional caregivers, who also raised ethical issues encountered when patients struggled with communication. Both groups talked about external factors (such as noise or crowded social settings) as disrupting communication, and shared recommendations on how people in general, and speech and language therapists (SLTs) in particular, could optimize communication. Very few patients had received information about communication aids, and none was using AACs. Professional caregivers underlined the importance of interdisciplinary collaborations, including SLTs, in order to optimize care. Conclusions & Implications: Findings shed a light on everyday communication challenges faced by people with HD and their professional caregivers, and the lack of implementation of communication aids in this group. The dramatic impact of HD on patients' communication skills underscores the need to include SLTs in the follow‐up of this patient group, ideally from the early stages of the disease, while the patient is still capable of voicing his/her own wishes and thoughts. Future research that explores how to optimize communication and implement the use of AACs for individuals with HD is needed. What this paper addsWhat is already known on this subjectAlthough the ability to communicate gradually deteriorates in individuals affected by Huntington's disease (HD), there is little knowledge about how affected individuals experience the loss of speech and language skills. Interdisciplinary care is recognised as essential for this patient group. However, professional caregivers' thoughts and experiences of communicating with their patients have not been fully explored. Recent years have seen a rapid growth of available communication supporting technologies that could potentially be helpful for individuals with HD, but limited attention has been given to this subject.What this paper adds to existing knowledgeWhat do we now know as a result of this study that we did not know before the results highlight that patients are aware of problems with speech and language even in early phases of the disease, and include patients' personal outlook on problems with communication. Professional caregivers raised ethical issues encountered when patients struggled with communication. Both groups described specific strategies that could facilitate communication. There was a significant lack of experience and knowledge about augmentative and alternative communication aids (AACs).What are the potential or actual clinical implications of this work?Clinical implications of this study. The introduction of communication aids in the follow‐up of patients with HD needs to be discussed with the patients in the early phases of the disease, and implemented while the individual still has the capacity to learn and take advantage of alternative communication support. Results underline the importance of including speech and language therapists (SLTs) into multidisciplinary care of patients with HD. SLTs should be available also for professional caregivers who need advice on how to facilitate conversations and social interactions, in order to optimise care of patients with HD. [ABSTRACT FROM AUTHOR]

Background: There is a wide agreement that family and friends of people with aphasia (PWA) can play a crucial role in the rehabilitation of interpersonal communication. Therefore, speech and language therapists (SLTs) should include family and friends in the process of therapy. However, little has been said about the role of caregivers of severely disabled PWA in the rehabilitation of communication functions. Aims: To examine how caregivers of severely disabled PWA perceive their relationship and communication with PWA, how they facilitate communication with PWA, and whether the caregiver's personality and emotional intelligence modify the abovementioned processes. Methods & Procedures: The study involved 123 caregivers of severely disabled stroke survivors with aphasia. Participants took part in a structured interview based on a structured interview guide created for the purpose of this study. The standardized psychological questionnaires NEO Five‐Factor Inventory (NEO‐FFI) and Schutte Emotional Intelligence Scale (SEIS) were used. Outcomes & Results: The caregiver's positive attitude towards the PWA correlated with the active facilitation of communication. The personality traits of caregivers and their level of emotional intelligence were associated with the tendency to use certain techniques to facilitate communication with PWA. Conclusions & Implications: Caregivers' positive attitude towards PWA is beneficial for the rehabilitation of communicative functions. Personality traits and emotional intelligence could modify the caregiver's strategy of coping with aphasia‐related challenges and should be taken into consideration when providing support. What this paper addsWhat is already known on the subjectInterpersonal communication must by definition involve at least two people. Therefore, there are a lot of approaches in SLT where support is given not only to the PWA but also to the communication partners. The most important group is significant others, which is usually understood as family members and friends. There is an increasing recognition that SLTs should include them in therapy.What this paper adds to existing knowledgeFor those PWA who need constant care, caregivers may have a significant influence on the quality of communication. Their positive attitude towards PWA corresponds with more active facilitation of communication and can make rehabilitation more efficacious. Caregivers should be educated on the cognitive and behavioural aspects of aphasia and encouraged to look actively for a PWA's positive characteristics. Caregivers' personality traits play a role in facilitating communication. For example, caregivers with high agreeableness are more likely to enjoy providing care, while those with higher conscientiousness declare using more techniques to facilitate communication with the PWA.What are the potential or actual clinical implications of this work?Caregivers' personality traits play a role in caring. Their positive attitude towards PWA corresponds to more active facilitation of communication, which can lead to more effective rehabilitation. This should be taken into account when training caregivers. Training programmes should include cognitive and behavioural aspects of aphasia as well as emphasize the need to maximize the PWA's abilities. [ABSTRACT FROM AUTHOR]

Background: Up to 40% of stroke survivors acquire aphasia and require long‐term caregiver assistance after discharge from the hospital. Caregivers assume multiple roles as they help people with aphasia to access outpatient rehabilitative care in an increasingly person‐centred model of care. Examining caregiver roles and how different stakeholders in the rehabilitative journey perceive these roles may be the first step in providing more tailored support to caregivers and improving outcomes for both caregivers and people with aphasia. Aims: To characterize the roles caregivers assume while navigating outpatient rehabilitative care for people with aphasia after stroke from the perspective of different stakeholders in the rehabilitative process. Methods & Procedures: Thirty‐six people participated in the study, including seven caregivers, 22 stroke survivors with aphasia and seven healthcare providers. Focus groups were conducted, and an iterative thematic analysis was used to identify themes. Outcomes & Results: Results indicate that caregivers are perceived differently by varying stakeholders, and that caregivers adopt diverse roles as advocates, therapists, motivators and guardians. They assume these roles in order to fill gaps in services or otherwise to facilitate the recovery journey for the person with aphasia. Conclusions & Implications: This study provides a valuable glimpse into how varying stakeholders view the role of the caregiver during rehabilitation for people with aphasia after stroke. Providing caregivers with the training and support they need throughout the recovery journey by treating them as partners in the process may mitigate the perception of caregivers as feeling compelled to adopt multiple roles. [ABSTRACT FROM AUTHOR]