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Background: Australia's National Disability Insurance Scheme (NDIS) was launched in 2013 to provide financial support packages for people with disability to purchase supports and services to enhance independence. People with disability are required to develop a plan with the National Disability Insurance Agency (NDIA), the government department responsible for managing the NDIS. This scoping review aims to ascertain the level of research into people's experience of the NDIS planning process in these geographic areas. Methodology: Research publication databases were searched using a specific search string to identify research about people with disability and their families/carer's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications focused on Aboriginal and Torres Strait Islander people were additionally appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications' contents was undertaken to ascertain people with disabilities and carers experience of the NDIS planning process. Results: Ten (N = 10) research papers were found that met the inclusion criteria. Two papers were policy reviews and reported on the improvements of the NDIS planning process since its conception. The analysis found the research archive focused on five themes: (1) healthcare workforce and NDIA staff; (2) NDIS package holders and carers lack of awareness of the NDIS; (3) cultural/socio‐economic barriers; (4) travel funding; and (5) emotional burden of the NDIS planning process. Conclusion: There are limited papers available that explore people's experiences of the NDIS planning process in regional, rural and remote regions of Australia. This systematic review illuminates the difficulties, barriers and concerns of people with disability and their carers about the planning process. [ABSTRACT FROM AUTHOR]

Background: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. Objective: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. Methods: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. Results: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. Conclusion: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. Patient or Public Contribution: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members. [ABSTRACT FROM AUTHOR]

Introduction: We conducted a systematic review of qualitative evidence to improve understanding of the processes and outcomes of redress and reconciliation following a life‐changing event from the perspectives of individuals experiencing the event and their families. Methods: We searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life‐changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. Title and abstract and full‐text screening were undertaken independently by two reviewers. Data extraction and quality appraisal were conducted by one reviewer and checked by a second. We used a best‐fit framework synthesis approach, drawing upon procedural and restorative justice concepts. Findings: Fifty‐three studies (61 papers) were eligible for inclusion. Forty‐one studies (47 papers) were included in the synthesis, from which we identified four themes. Three themes 'Transparency', 'Person‐centered' and 'Trustworthy' represent the procedural elements required to support a fair and objective process. The fourth, 'Restorative justice' encapsulates how a fair process feels to those who have experienced a life‐changing event. This theme highlights the importance of an empathic relationship between the different parties involved in the redress‐reconciliation process and the significance of being able to engage in meaningful action. Conclusion: Our findings highlight the procedural aspects and context of redress‐reconciliation processes required to ensure that the process and outcomes are experienced as fair. These criteria may be applied to the processes used to investigate both recent and historical patient safety events. Public Contribution: One member of the public affiliated with the Exeter Policy Research Programme Evidence Review Facility helped develop the review protocol. Two people with experience of medically life‐changing events provided insight which corroborated our findings and identified important limitations of the evidence included in this review. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics including use of medication in residential aged care facilities; effect of dementia on daily life; and improvements in the care for older cognitively impaired patients with benefits for families.

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health‐promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self‐identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health‐promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.). [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]

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: Thirty percent of children with acute otitis media (AOM) experience symptoms < 7 days after initiating treatment, highlighting the importance of comprehensive discharge instructions. Methods: We randomized caregivers of children 6 months to 17 years presenting to the emergency department (ED) with AOM to discharge instructions using a video on management of pain and fever to a paper handout. The primary outcome was the AOM Severity of Symptom (AOM‐SOS) score at 72 hours postdischarge. Secondary outcomes included caregiver knowledge (10‐item survey), absenteeism, recidivism, and satisfaction (5‐item Likert scale). Results: A total of 219 caregivers were randomized and 149 completed the 72‐hour follow‐up (72 paper and 77 video). The median (IQR) AOM‐SOS score for the video was significantly lower than paper, even after adjusting for preintervention AOM‐SOS score and medication at home (8 [7–11] vs. 10 [7–13], respectively; p = 0.004). There were no significant differences between video and paper in mean (±SD) knowledge score (9.2 [±1.3] vs. 8.8 [±1.8], respectively; p = 0.07), mean (±SD) number of children that returned to a health care provider (8/77 vs. 10/72, respectively; p = 0.49), mean (±SD) number of daycare/school days missed by child (1.2 [±1.5] vs. 1.1 [±2.1], respectively; p = 0.62), mean (±SD) number of workdays missed by caregiver (0.5 [±1] vs. 0.8 [±2], respectively; p = 0.05), or median (IQR) satisfaction score (5 [4–5] vs. 5 [4–5], respectively; p = 0.3). Conclusions: Video discharge instructions in the ED are associated with less perceived AOM symptomatology compared to a paper handout. [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]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Paid carers play an important role in helping older adults with care needs to remain living in their own homes. This paper examines changes in the home care field, specifically the emergence of self‐employed care entrepreneurs ('microentrepreneurs'). To do this, it employs Bourdieu's concepts of field, capital and habitus. Drawing on 105 semi‐structured interviews with stakeholders working in home care, the paper describes how the interaction of changes to field structures, and altered practices of care have challenged the taken‐for‐granted acceptance of traditional, transactional forms of care provision. This process has been highly dependent on local state actors, their ability to mobilise relevant forms of capital and the factors which shaped their habitus. It should be seen within the context of changes to local field structures and the hierarchical classification processes which underpin them. These changes threaten the distribution of capital in the home care field in ways that are beneficial to microentrepreneurs. Bourdieu might categorise these developments as 'partial revolutions', which do not challenge the fundamental axioms of the field. However, for care entrepreneurs, formerly employed as low‐paid home‐care workers, a revolution that is only partial may be better than none at all. [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]

Objectives: This study comprises a synthesis of published qualitative studies from developed countries on the perspectives of carers regarding the oral hygiene toothbrushing practices of preschool children, through the lens of social practice theory. Methods: A search of the following electronic databases was conducted for all available years: MEDLINE, EMBASE and Global Health using the Ovid platform; Dentistry & Oral Sciences Source (DOSS), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Scopus. Included qualitative studies reported primary caregivers' perceptions of oral hygiene practices (focusing on toothbrushing) in preschool children (0–5 years old) in developed countries. A thematic synthesis of the qualitative findings was undertaken for the results of each study. Results: Eleven articles were included in this meta‐synthesis. The focus of this paper was toothbrushing practices. A conceptual map of toothbrushing as a social practice was developed. Key findings included practice elements (meanings, competences, and materials), spatial and temporal aspects, and barriers and facilitators to performance. Conclusions: The application of a social practice lens to published qualitative research on the oral hygiene of preschool children provided insights into the meanings and competences related to toothbrushing, as perceived by primary caregivers. However, it also revealed limited information on material, spatial and temporal aspects of toothbrushing practices, indicating the importance of considering social practice theory as a framework in future research to address this gap. Furthermore, exploring toothbrushing in connection with related social practices has the potential to increase understanding of factors influencing oral health in preschool children. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co‐designed tool, the COVID Check‐in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check‐in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty‐four percent of participants engaged in the Health Check‐in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check‐in, along with challenges using the COVID Check‐in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Accessible Summary: Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check‐in'.Then people from our team taught online health courses about how to use the COVID Check‐in Tool and other health topics.After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check‐in with their doctor and how it went, or what problems they had with it.Almost half of the people who took the courses had a Health Check‐in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it.We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools. [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]

Introduction: The COVID‐19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. Methods: Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID‐19 pandemic. Results: The COVID‐19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID‐19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift. Conclusions: This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID‐19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners. Patient Contribution: Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners. [ABSTRACT FROM AUTHOR]

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia. [ABSTRACT FROM AUTHOR]

Objectives: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed‐methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers. Methods: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed‐method studies, published in English or German, focused on experiences of using technology‐delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included. Results: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech‐literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes. Conclusions: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery. Key points: Evidence emphasises benefits and challenges to the availability, implementation, use, of technology in health and social care access in dementia.Though there are issues, technology can help improve quality of life for people with dementia, can support carers to care, and facilitate positive relationships between unpaid carers and people with dementia.Proliferation of technology for care access was expedited during COVID‐19, but has not been equally rolled out, making remote and disadvantaged groups less well‐served.A hybrid delivery of services in which people are given choice of delivery method, and are supported in accessing and using technology, will better serve people with dementia and unpaid carers. [ABSTRACT FROM AUTHOR]

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were analyzed thematically. Study findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as "child play," it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions. [ABSTRACT FROM AUTHOR]

Given that the number of children and young people needing care keeps rising and fewer people are becoming foster carers, efforts to support carers and workers in foster caring are essential. This paper considers the experiences of carers and foster care agency workers involved in Australia's piloting of the Mockingbird Family. With a view understanding experience, data were collected via focus groups with carers and agency workers (n = 20) involved in piloting, implementation and evaluation. Deductive analysis applied the theory of experience to generate understanding of experience, as both intrinsic and extrinsic dimensions to capture strengths in the Mockingbird Family's foster caring networks. These dimensions of experience included collective passions of carers and workers; experiential change over time; collective experiences as a moving force; and experiences as transformational. Understanding of experience associated with the perceived strengths of the Mockingbird Family, including strategies to promote strong professional relationships between carers and workers, is an important element in strengthening environments of children and young people in care. Safe and stable environments are crucial for wellbeing. [ABSTRACT FROM AUTHOR]

Many children continue to be sexually abused worldwide. In Ghana, relatively high figures of child sexual abuse (CSA) are reported by the police daily. Although there are laws that seek to protect children from sexual abuse, in reality, there is a wide gulf between legislation and practice. This paper explores why this is so by examining the measures adopted in sanctioning perpetrators of CSA in the Ga community in Ghana. The study uses a qualitative approach to collect data from parents and guardians through in‐depth interviews. The study revealed that, generally, traditional rather than legal sanctions are adopted in handling CSA cases. This paper thus interrogates the consequences of the obvious contraventions of the law as traditional interventions are resorted to. We posit that CSA can be minimised only when child protection laws are enforced by the police and victims are reoriented to appreciate the benefits of seeking legal redress. Key Practitioner Messages: Conscious efforts must be made to destigmatise child sexual abuse.Sensitisation programmes should be organised periodically by stakeholders to educate community members on child sexual abuse.The police in partnership with the media must also lead the campaign to educate the populace that choosing traditional options of redress and non‐disclosure of incestuous acts against children is a clear violation of the law and the rights of the child. [ABSTRACT FROM AUTHOR]

Background: Men represent a growing proportion of unpaid family carers across Europe. Comparative studies have proposed male carers experience their caring role differently to females; men are less likely to avail of formal support services than women. Social ideas around masculinity have been linked to the help-seeking behaviours of male carers, as well as men's attitudes around accessing formal support. More understanding about this role from the perspective of male carers is required. Methods: The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the selected studies was evaluated using the Mc Master checklist. Using NVivo 12 software, primary data were analysed and themes throughout the papers were identi- fied. Results were synthesised as a meta-ethnography that retained direct quotes from the studies. Results: Two themes and five sub-themes were developed from the data. The first theme was 'Men's experiences of formal support' which contained sub-themes 'Reluctance to step back', 'A space to share emotions' and 'Education diminishes burden'. The second theme was 'Coping without Formal Support' with sub-themes 'Satisfied without help' and 'Duty prevents help seeking'. Conclusions: Fear of perceived failure and a loss of control in the caring relationship were key factors in men's low trust and dissatisfaction with available services. To engage more male carers, formal service providers should acknowledge men's wish to be seen as competent in the care role as well as their desire to stay involved in decision-making around care for their family member. Support services that were collaborative, education-based and gender-sensitive were favoured by male carers. [ABSTRACT FROM AUTHOR]

Background: Interest in internet‐based patient reported outcome measure (PROM) collection is increasing. The NHS myHealthE (MHE) web‐based monitoring system was developed to address the limitations of paper‐based PROM completion. MHE provides a simple and secure way for families accessing Child and Adolescent Mental Health Services to report clinical information and track their child's progress. This study aimed to assess whether MHE improves the completion of the Strengths and Difficulties Questionnaire (SDQ) compared with paper collection. Secondary objectives were to explore caregiver satisfaction and application acceptability. Methods: A 12‐week single‐blinded randomised controlled feasibility pilot trial of MHE was conducted with 196 families accessing neurodevelopmental services in south London to examine whether electronic questionnaires are completed more readily than paper‐based questionnaires over a 3‐month period. Follow up process evaluation phone calls with a subset (n = 8) of caregivers explored system satisfaction and usability. Results: MHE group assignment was significantly associated with an increased probability of completing an SDQ‐P in the study period (adjusted hazard ratio (HR) 12.1, 95% CI 4.7–31.0; p = <.001). Of those caregivers' who received the MHE invitation (n = 68) 69.1% completed an SDQ using the platform compared to 8.8% in the control group (n = 68). The system was well received by caregivers, who cited numerous benefits of using MHE, for example, real‐time feedback and ease of completion. Conclusions: MHE holds promise for improving PROM completion rates. Research is needed to refine MHE, evaluate large‐scale MHE implementation, cost effectiveness and explore factors associated with differences in electronic questionnaire uptake. [ABSTRACT FROM AUTHOR]

Background: Older people with frailty and multimorbidity are at high risk of problematic polypharmacy. Community pharmacists have a key role in medication safety for older people. Aim: The aim of this study was to investigate the perspectives of older people with frailty, multimorbidity, and polypharmacy, and their family caregivers or whānau on the role of community pharmacists, including in situ pharmacist care practices. Method: This study was part of a larger video reflexive ethnography (VRE) study to explore medication safety and wellbeing for older people with frailty across care transitions including hospital, home, aged residential care, primary care, and outpatient care. This paper reports data from the interview, participant observation, and filming phases of the study. Results: Community pharmacists play a significant role in the medication safety of older people with frailty and polypharmacy. Analysis resulted in three main themes: (1) the older person–determined role of the pharmacist, (2) the 'taken for granted' safety work of the pharmacist, and (3) collective agency and medication safety. Conclusion: In circumstances where older people and their family caregivers or whānau had a trusted relationship with a community pharmacist, the pharmacist played a key role as mediator of medication safety and was central to older people's care. This key role as a member of the multidisciplinary team in the care of older people with frailty and multimorbidity should be better recognised and legitimised by clinicians and policy makers and resourced accordingly. [ABSTRACT FROM AUTHOR]

This paper discusses the methodological processes of a qualitative PhD research project with young people aged between 12 and 17 years who are the primary carer for a family member with physical or mental health problems. The field work was conducted over 2 years in rural Australia and involved one‐on‐one discussions with young carers in their family homes. The research was grounded in post‐structural epistemology that questioned existing literature and challenged the assumptions of childhood on which it is based. Consequently, it sought to pursue a different approach to young carer research, one that adopted a participatory methodology that positioned the young people as co‐researchers. Young people were involved in the design and conduct of the research and the analysis process. This paper critiques the research space, reflecting on what was made possible and what was limited or not fully realised. The paper discusses the tensions between post‐structural theory and participatory methodology that reveal limitations to collaboration between adult researchers and young people. [ABSTRACT FROM AUTHOR]

Background: Despite recommendations for nutritional risk screening of all inpatients, outpatients and care home residents, as well as work to assess clinician's experiences and the validity of tools, little attention has been paid to the experiences of patients undergoing nutritional screening. This review aims to synthesise systematically the current evidence regarding nutritional risk screening with respect to the experiences and views of patients, their families and carers. Methods: A systematic search was performed in MEDLINE, Embase, PsychINFO, CINAHL, Web of Science and British Nursing Database (inception – July 2019); with screening terms related to malnutrition, screening tools and experience. Titles, abstracts and full‐text papers were independently reviewed by two reviewers and then quality‐appraised. Qualitative papers and quantitative surveys were included. A narrative review of surveys and a thematic framework synthesis of interviews were used to identify themes. Results: Nine studies, including five qualitative interview papers, were included. Qualitative and quantitative study results were combined using a matrix chart to allow comparison. Surveyed participants reported processes of nutritional screening as acceptable. Three key themes emerged from qualitative data: (i) experience of nutritional screening; (ii) misunderstanding of malnutrition: of causes, role of screening and poor self‐perception of risk; and (iii) barriers to and opportunities for change. Conclusions: Although the screening process is acceptable, patients' misunderstanding and poor knowledge regarding causes and consequences of malnutrition result in reduced risk perception and disbelief or disregard of nutritional screening results. Findings should inform policy and clinical practice, as well as highlight the known paucity of data regarding the effectiveness of screening on clinical outcomes. [ABSTRACT FROM AUTHOR]

Background and Objectives: Hospitals streamline treatment pathways to reduce the length of time older adults admitted for planned procedures spend in hospital. However patient perspectives have been poorly evaluated. This systematic review aimed to understand the experiences of older patients, carers, families and staff of multi‐component interventions intended to improve recovery following elective treatment. Research Design and Methods: Bibliographic databases searched in June 2021 included MEDLINE ALL, HMIC, CENTRAL, CINAHL, AMED and ProQuest Dissertations and Theses. We conducted citation searching and examined reference lists of reviews. Two reviewers independently undertook screening and data extraction, resolving disagreements through discussion. We used an adapted Wallace checklist for quality appraisal and meta‐ethnography to synthesise data. Clinician, carer and patient views were incorporated throughout the review. Results: Thirty‐five papers were included in the synthesis. Thirteen studies were conducted in the UK, with patient views the most frequently represented. We identified six overarching constructs: 'Home as preferred environment for recovery', 'Feeling safe', 'Individualisation of structured programme', 'Taking responsibility', 'Essential care at home' and 'Outcomes'. Discussion and Implications: Findings explore the support patients, families and carers need throughout hospital admission, and may inform commissioning of services to ensure patients and carers receive appropriate follow‐up support after hospital discharge. The findings may help hospital and community‐based health and social care staff provide person‐centred care based upon assessments of emotional and physical wellbeing of patients and family/carers. Research is needed to establish a core‐set of patient‐reported outcome measures which capture aspects of recovery which are meaningful to patients. [ABSTRACT FROM AUTHOR]

Introduction: As patient and public involvement (PPI) in research has become increasingly common, research‐based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. Objective: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. Methods: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand‐searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. Findings: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. Conclusion: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. Patient and Public Involvement: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis. [ABSTRACT FROM AUTHOR]

Objective: This paper used network analysis to test the associations between eating disorder‐related psychopathology and carers' responses to anorexia nervosa symptoms in adolescents. Additionally, the prognostic value of central and bridge network nodes was explored. Method: This is a secondary analysis of a three‐armed randomised‐controlled‐trial of adolescents with anorexia nervosa (n = 149) and their primary carer (n = 149) who were allocated to either treatment as usual (TAU), or one of two versions of a carer skills intervention (ECHO) added to TAU. A network analysis was run in the full sample. The prognostic role of central and bridge nodes was tested through multiple regression analyses. Results: Carers' depression and emotional over‐involvement, as well as patients' depression showed the highest strength centrality. Patients' depression and carers' accommodation exhibited the highest bridge expected influence. Across the full sample, and in the ECHO group, carers' accommodation predicted patients' higher body mass index (BMI), while patients' depression predicted worse psychosocial functioning at 1‐year follow‐up. In the ECHO group, higher carers' depression also predicted lower BMI. Conclusions: Carers' accommodation and depression in both carers and patients were involved in the maintenance of psychopathology in adolescents with anorexia nervosa. Depression in both patients and carers is a potential treatment target for family interventions. Key points: Accommodation is the carers' variable most connected with adolescents' symptoms and is positively associated with adolescents' BMI at 1 year follow‐up.Depression is the adolescents' symptom most connected with carers' functioning and predicts impaired psychosocial functioning at 1 year follow‐up.carers' depression contributes to the maintenance of anorexia nervosa psychopathology and is negatively associated with adolescents' BMI at 1 year in ECHO treatment group. [ABSTRACT FROM AUTHOR]

Background: There are challenges to person‐centred care provision in Emergency Medical Services (EMS) settings. The environment is often busy and noisy which can influence the experience of older people and their carer/partners when they attend emergency departments. Older people with mental health needs are a vulnerable group of people who are at risk of not having their needs met in acute care settings. This is due to complex presentations and increased pressures on the EMS system. Aim: The aim of the paper was to explore the care experience of older people with mental health needs and their carer/partners in pre‐hospital and in‐hospital Emergency Medical Services settings. Method: This study used an interpretive qualitative approach incorporating in‐depth, individual interviews to gather information on the experience of the older person with mental health needs and carers/partners. Data were analysed using Braun and Clarke's (2006) thematic analysis. Results: Fifteen individual interviews were carried out with older people with mental health needs (n = 10) and with carers/partners (n = 5). Six themes on 'Getting there, getting in and getting out', 'Seeing the person', 'Perceptions and experiences of the pre‐hospital and Emergency Department (ED)', 'The effects of the experience on personal well‐being', 'Older person/carer/partner perceptions and experiences of the EMS staff' and 'Making it better' emerged from the data. Conclusions: The results suggest that previous experiences with the emergency care system influence the way older people with mental health needs and their carers make decisions on current and future care needs. Negative experiences can be influenced by the layout and organisation of the ED. Participants remain reluctant to discuss or disclose their diagnosis in the Emergency Medical Services setting due to a perceived stigma. Health and social care systems and services need to undergo transformations to ensure that all people who access services are treated fairly and effectively. [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]

Consumers of mental health services experience poor physical health compared to the general population, leading to long‐term physical illness and premature death. Current research and policy activity prioritizes the physical health of consumers yet few of these recommendations have translated to practice. This implementation gap may be influenced by the paucity of literature exploring consumer perceptions and experiences with physical healthcare and treatment. As a result, little is understood about the views and attitudes of consumers towards interventions designed to improve their physical health. This integrative review aims to explore the literature regarding consumer perspectives of physical healthcare and, interventions to improve their physical health. A systematic search was undertaken using (i) CINAHL, (ii) MEDLINE, (iii) PsycINFO, (iv) Scopus, and (v) Google Scholar between September and December 2021. Sixty‐one papers comprising 3828 consumer participants met the inclusion criteria. This review found that consumers provide invaluable insights into the barriers and enablers of physical healthcare and interventions. When consumers are authentically involved in physical healthcare evaluation, constructive and relevant recommendations to improve physical healthcare services, policy, and future research directions are produced. Consumer evaluation is the cornerstone required to successfully implement tailored physical health services. [ABSTRACT FROM AUTHOR]

Currently dominant in medical discourse, the concept of self‐management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under‐theorised. While self‐management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day‐to‐day management. In all, 22 couples participated in in‐depth, semi‐structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork. [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]

An introduction to the journal is presented that focuses on articles related to learning disabilities, with topics covered such as the sexuality of young people with learning disabilities in Malta, sleep hygiene education as an intervention for addressing behavioural sleep problems in children with developmental disabilities, and relationship interventions to boost self-determination of people with learning disabilities as a major issue for social care.

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

Background: To facilitate change for person‐centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person‐centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person‐centred care. Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person‐centred care from the patient's perspective. Methods: The Centre for person‐centred care at Gothenburg university and the UK Person‐centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person‐centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. Results: From the initial pool, 155 items covering core domains and subdomains of person‐centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person‐centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two‐ways and care is co‐created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well‐being and identifying goals). Conclusion: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person‐centred care. [ABSTRACT FROM AUTHOR]

Most of the research examining children visiting a parent in prison indicates that visits have a positive impact on children's well‐being, their connection to the imprisoned parent and the parent themselves. However, the COVID‐19 pandemic brought about a significant change to prison visits worldwide, with limits or bans on face‐to‐face contact. Understanding the experiences and needs of children during this period remains limited. This paper presents the findings of a survey of 84 carers of 184 children across Australia, investigating children's experiences of contact with their imprisoned parent both before and during COVID‐19 restrictions. Although most carers reported maintaining contact during restrictions, a range of difficulties were noted: reduced availability; the effect of prison‐based issues, including lockdowns; and the suitability of video/telephone visits for young children. Some described the benefits of videoconferencing, including reduced travel time and cost, and not needing to take children into a prison environment. Despite this, respondents typically described the negative impact of restrictions, and lack of physical contact, on children's emotional well‐being. Our findings suggest that, for video visiting to be successful, it should be complementary to in‐person visits, tailored to the needs of children, with support offered to families. [ABSTRACT FROM AUTHOR]

The majority of children and young people removed from the care of their parents by the state of Victoria, Australia, reside in foster or kinship care. These children have experienced a broad range of adverse conditions and are up to 4 times more likely to experience problems with mental health than their mainstream peers. This paper draws on the perspectives of foster and kinship carers, describing the disconnection between their role as mental health advocates and their interest in early intervention in a field which is dominated by crisis and the historic marginalisation of foster and kinship carers. Thirty‐one foster and kinship carers across greater metropolitan Melbourne, Australia, contributed to this study through interviews and focus groups. Participants demonstrated a practical understanding of mental health and an ability to identify a range of conditions that have an adverse impact on the mental health of children and young people in their care. The paper concludes that there is a lack of systemic support and even a range of barriers that affect the capacity of foster and kinship carers to promote the mental health and well‐being of the children and young people in their care. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

Are the clean intermittent catheterization (CIC)‐cgQ and the CIC‐childQ feasible and generate valid measures of success performing CIC? CIC is the primary treatment for neurogenic bladder. However, instituting CIC with children can be challenging. Currently there are no validated instruments to measure the abilities of paediatric patients and their caregivers to perform CIC. The purpose of this study was to evaluate the validity and reliability of a modified version of the Intermittent Self Catheterization Questionnaire (ISC‐Q) in children with neurogenic bladder and their caregivers performing CIC. Children with spinal dysraphism, such as myelomeningocele (MMC) may face urologic challenges related to neurogenic bladder including renal compromise, recurrent urinary tract infections, and urinary incontinence due to bladder deterioration. CIC is an important intervention in the management of patients with neurogenic bladder. There are no valid tools currently available to measure the success of CIC in paediatric patients or their caregivers. A non‐experimental, psychometric research design was employed for this pilot study. Data collection was performed using online and paper surveys. The ISC‐Q was modified into two versions for use in the United States, one for caregivers of children on CIC (CIC‐cgQ) and one for paediatric patients on CIC (CIC‐childQ). A convenience sample of subjects was recruited from Spinal Differences Clinic and the local spina bifida support group. Informed consent was embedded in the invitation letter/email with survey completion indicating consent to participate. Criterion related validity was described using known group sum scores along with Cronbach's α for internal reliability. The tools were pilot tested on 15 caregivers and four children. Cronbach's alphas were.84 and.83 for the caregivers and children, respectively. Subjects identified a priori as successful with CIC scored higher than those identified as unsuccessful. The CIC‐cgQ and the CIC‐childQ are valid and reliable measures of the impact of CIC on the lives of caregivers and children. Future studies with larger sample sizes will allow further psychometric testing. This instrument gives researchers the ability to measure the impact of CIC on the lives of children and caregivers. [ABSTRACT FROM AUTHOR]

Objective: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. Methods: A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results: 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution: A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up. [ABSTRACT FROM AUTHOR]

Aim: Behavioral and psychological symptoms of dementia (BPSD) are common in patients with moderate–severe dementia and have negative impacts on both patients and caregivers. There is a lack of a tool for caregivers to monitor patients' BPSD by themselves. This study aimed to develop and validate a mobile application for caregivers to use in monitoring BPSD. Methods: A total of 104 pairs of patients with moderate–severe dementia and their caregivers completed the study. The Neuropsychiatric Inventory (NPI) was modified and digitally transformed to a caregiver‐rating mobile application to quantify nine domains of BPSD for their frequency and impact on the emotion of the caregivers. Data collected from the application were compared with the paper‐and‐pencil NPI for prevalence, concurrent validity (Spearman's rho) and internal consistency (Cronbach's alpha). Results: The application was able to detect 93% of BPSD compared with the NPI. Concurrent validity was good–very good when compared with the Frequency × Severity score (ρ = 0.77, P < 0.001) and the burden score (ρ = 0.85, P < 0.001) from the NPI. Levels of internal consistency were acceptable for both frequency (α = 0.73) and impact (α = 0.79) scores. 80% of the caregivers reported that the application was "very likely to be helpful in caregiving". Conclusions: The mobile application for monitoring BPSD in patients with moderate–severe dementia had an excellent sensitivity, and good–very good validity and consistency. The caregivers had a positive perception of the application as an aid in caregiving. Geriatr Gerontol Int 2021; 21: 472–477. [ABSTRACT FROM AUTHOR]

There is currently limited information about the impact and experiences of a suicide attempt on the well‐being of a person providing care before, during, or after the attempt. Scant evidence available suggests that providing care has a profound impact on the support person or carers' own physical and psychological health; they may experience adverse health, financial, and functional outcomes, collectively described as 'caregiver burden'. This project sought to understand insights into the experience of providing care for someone who has previously attempted suicide. The larger study was designed in three phases consisting of an online survey, semi‐structured interviews, and a follow‐up survey. This paper reports the qualitative findings of the interviews which were thematically analysed. Two symbiotic themes emerged: the lived experience of caring and the impact of engagement and support from the healthcare system. The authors concluded that that the carer position is a multidimensional role involving informal agreements and situational or time‐based support. Further, awareness of this shifting relationship needs to be embedded in the provision of care by health professionals following a suicide attempt. Recommendations for enhanced health system response are proposed. [ABSTRACT FROM AUTHOR]

Introduction: Poor medical information transfer across healthcare visits and providers poses a potential threat to patient safety. Patient‐held health records (PHRs) may be used to facilitate informational continuity, handover communication and patient self‐management. However, there are conflicting opinions on the effectiveness of PHRs, other than in maternal and child care. Moreover, the experiences of users of PHRs in low‐ and middle‐income countries are critical in policy decisions but have rarely been researched. Aim: This study aimed to explore similarities and differences in the perspectives of patients, carers and healthcare providers (HCPs) on the current PHRs for diabetes and hypertension in Kerala. Methods: A qualitative design was used comprising semistructured interviews with patients with diabetes/hypertension (n = 20), carers (n = 15) and HCPs (n = 17) in Kerala, India. Data were analysed using thematic analysis. Results: Themes generated regarding the experiences with PHRs from each user group were compared and contrasted. The themes that arose were organized under three headings: use of PHRs in everyday practice; the perceived value of PHR and where practice and value conflict. We found that in the use of PHRs in everyday practice, multiple PHRs posed challenges for patients carrying records and for HCPs locating relevant information. Most carers carried all patients' past PHRs, while patients made decisions on which PHR to take along based on the purpose of the healthcare visit. HCPs appreciated having PHRs but documented limited details in them. The perceived value of PHRs by each group for themselves was different. While HCPs placed value on PHRs for enabling better clinical decision‐making, preventing errors and patient safety, patients perceived them as transactional tools for diabetes and hypertension medications; carers highlighted their value during emergencies. Conclusion: Our findings suggest that users find a variety of values for PHRs. However, these perceived values are different for each user group, suggesting minimal functioning of PHRs for informational continuity, handover communication and self‐management. Patient and Public Involvement: Patients and carers were involved during the pilot testing of topic guides, consent and study information sheets. Patients and carers gave their feedback on the materials to ensure clarity and appropriateness within the context. [ABSTRACT FROM AUTHOR]

A child's diet should be composed of appropriate nutrients to achieve optimal nutritional status, and though there is a substantial evidence base for child feeding recommendations, developing countries continue to face challenges regarding optimal child feeding. This paper describes an ethnographic study undertaken in rural northern Ghana to explore community perceptions of what 'counts' as food for children and the impact this had on the nutrients they received. Fifteen households with children under 5 years were purposively selected. In‐depth interviews were held with 25 mothers, 7 fathers and 8 grandparents within these households as well as 2 diviners. Participant observations were also undertaken. Findings show that satiety rather than nutrition was the key consideration in adult choices about a child's diet. The community regarded carbohydrate‐based meals as food, but considered protein, vitamins and mineral‐based foods as nonessential elements of a child's diet, and important sources of these nutrients were regarded as treats. [ABSTRACT FROM AUTHOR]

Introduction: With governments worldwide reducing their involvement in the provision of institutional long‐term elder care, community‐based family caregivers (FCs) have become a key element in policies aimed at improving the quality of healthcare systems and maintaining their financial sustainability. This paper uses data from focus groups with FCs providing care to older adults to describe their approaches to and priorities for achieving care quality and sustainability as they work with formal health and social care systems. It describes FCs' views on information and communications technology (ICT) as potential supports for achieving these care quality and sustainability goals. Methods: We held 10 focus groups from May 2017 to August 2018 and recruited 25 FCs through a mix of convenience and snowball sampling strategies. We employed an inductive approach and used qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Results: Quality of care – as delivered by both FCs themselves, and formal health and social care systems – was a major preoccupation for our participants. They saw communications quality as a key aspect of the broader concept of care quality. Our data analysis produced a typology of communications quality from the FC perspective. Analysis of our data also revealed ICT development opportunities and available products in key areas. Conclusions: Our findings suggest that the formal care system providers could be more caregiver‐oriented in their communications by engaging FCs in the decision‐making process and allowing them to express their own concerns and goals. The implication of our findings for those seeking to develop policies and ICT products in support of FCs is that these should focus on human relationships and seek to expand facilitative communications. [ABSTRACT FROM AUTHOR]