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Aim: To describe the co‐designing process of an online support programme with and for informal carers of people with heart failure. Design: A co‐design process built on core concepts and ideas embedded in co‐design methodology. Data sources: Our co‐design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme. Outcomes: The co‐design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal. Conclusion: Co‐design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process. Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person‐centred care and provides a valuable learning opportunity for those involved. Furthermore, a co‐designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self‐care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel. Reporting methods: Consolidated criteria for reporting qualitative research (COREQ). Patient or public contribution: Both informal carers and content creators were involved in developing the support programme. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this paper was to examine variables associated with food insecurity among community college caregivers during the COVID-19 pandemic. Methods: We used data from a multi-institutional survey of 15,051 caregivers enrolled at 130 community colleges in 42 states in fall 2020. We used a logistic regression to examine whether demographic, academic, caregiving-related, financial, or COVID-19-related variables were associated with caregivers' food insecurity. Results: Over half (52%) of community college caregivers experienced food insecurity. Transgender caregivers, first-generation caregivers, and caregivers who were divorced or single, had multiple disabilities, were previously in foster care, and had a family that experienced trouble making ends meet growing up had significantly (p < 0.05) higher probabilities of experiencing food insecurity. Community college caregivers who used childcare and those with at least one child up to 12 years old also had increased probabilities of experiencing food insecurity. Moreover, caregivers who felt childcare was not affordable and believed that they did not earn enough money to make employment worthwhile after paying for childcare expenses had higher probabilities of experiencing food insecurity, as did those who experienced housing insecurity and used Pell grants, student loans, and support from friends or family to pay for college. Losing a job, experiencing cuts to work hours or wages, employment as a frontline worker, and contracting COVID were associated with higher probabilities of food insecurity. Contributions: Community college caregivers experienced high rates of food insecurity during the pandemic and some caregivers were at greater risk of exacerbated probabilities of food insecurity. We advocate for targeted interventions, wraparound services, and increased advocacy for legislation to support student caregivers.

Aims and Objectives: To explore organisation‐wide experiences of person‐centred care and risk assessment practices using existing healthcare organisation documentation. Background: There is increasing emphasis on multidimensional risk assessments during hospital admission. However, little is known about how nurses use multidimensional assessment documentation in clinical practice to address preventable harms and optimise person‐centred care. Design: A qualitative descriptive study reported according to COREQ. Methods: Metropolitan tertiary hospital and rehabilitation hospital servicing a population of 550,000. A sample of 111 participants (12 patients, 4 family members/carers, 94 nurses and 1 allied health professional) from a range of wards/clinical locations. Semi‐structured interviews and focus groups were conducted at two time points. The audio recording was transcribed, and an inductive thematic analysis was used to provide insight from multiple perspectives. Results: Three main themes emerged: (1) 'What works well in practice' included: efficiency in the structure of the documentation; the Introduction, Situation, Background Assessment, Recommendation (ISBAR) framework and prompting for clinical decision‐making were valued by nurses; and direct patient care is always prioritised. (2) 'What does not work well in practice': obtaining the patient's signature on daily care plans; multidisciplinary (MDT) involvement; duplication of paperwork and person‐centred goals are not well‐captured in care plan documentation. (3) 'Experience of care'; satisfaction of person‐centred care; communication in the MDT was important, but sometimes insufficient; patients had variable involvement in their daily care plan; and inadequate integration of care between MDT team which negatively impacted patients. Conclusions: Efficient and streamlined documentation systems should herald feedback from nurses to address their clinical workflow needs and can support, and capture, their decision‐making that enables partnership with patients to improve the individualisation of care provision. Relevance to clinical practice: The integration of effective MDT involvement in clinical documentation was problematic and resulted in unmet supportive care from the patient's perspective. [ABSTRACT FROM AUTHOR]

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (M[subscript age] = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha = 0.93) and test-retest (ICC = 0.95) reliability. Scores were normally distributed and sensitive to age (r = - 0.19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = - 0.35), and challenging behaviors (r = 0.57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children.

Background: Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. Method: A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. Results: This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. Conclusions: This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.

Making sensitive pedagogic relationships in the nursery is a deeply human activity evoking joy and satisfaction, but stress and uncertainty too. From an international perspective, strong local reflective spaces are required if early childhood provision is to be culturally and context responsive, counter-balancing globalising pressure to standardise provision. Further, nursery practitioners are entitled to a formal space where their subjective experience of the work, its demands and dilemma, can be expressed and understood. This paper is about 'Work Discussion' (WD) as such a reflective space. Professional reflection is now included in early years policy frameworks internationally for the reasons above. WD, distinctive in including explicit attention to emotion in pedagogy, is one model of a reflective space. This paper arises from a longitudinal evaluation of WD in nursery funded by the Froebel Trust. The methodology of the evaluation and the positive findings of impact for children have already been published. The aim of this paper is to theorise WD, drawing on the work of Wilfried Bion, a psychoanalyst and theorist of thinking in groups. Empirical data if offered to illustrate the explanatory power of Bion's theory including what may be discussed openly and what is avoided in pedagogic reflection.

To date, there is a lack of suitable assessment tools specifically for the looked after child population. Such assessments, often completed by foster carers, help to provide an overview of a child's presenting level of emotional and behavioural need, and are evidential in offering a pathway to further provision and services for young people in care. This study explores perspectives of foster carers working at one UK-based independent fostering agency, Five Rivers Child Care (FRCC). The twofold study, conducted in 2017, involved understanding foster carers' perceptions both of routine assessments and subsequent feedback procedures; activities which are mandatory to facilitate foster carers' understanding of the wellbeing needs of the young people within their care. In Study 1, an online quantitative survey established foster carers' (n = 42) experiences of assessment and intervention, over a six-month timeframe. Study 2, conducted with a subsample of carers (n = 6) used telephone interviews to provide additional qualitative insight. The findings of both studies were consistent, highlighting the need for enhanced relevance of assessments, active involvement in the assessment process, more knowledge of the process; greater support with assessments; and further opportunity to self-reflect. The paper reflects on how the findings resulted in developments within the FRCC assessment process in 2018, including adaptations and additions to its protocol, with the aims of improving outcomes for children in care services, increasing collaboration and support, and enhancing reflection and practice. These findings have allowed for assessments to be tailored or changed, with carers being far more involved and informed of the process, resulting in improved practice and enhanced learning about this population. Furthermore, this study has wider implications beyond FRCC: the extracted themes are likely to be highly pertinent and applicable across similar populations, with assessment protocols enhancing understanding about the expectations and challenges that might emerge within this population.

In this paper, we analyse mechanisms of exclusion in Norwegian daycare facilities for children ("Skolefritidsordning -- SFOs), which provide after-school care. Such mechanisms are analysed and discussed as unanticipated consequences of reform policy initiatives or simply as accepted trade-offs left to the SFO staff's discretion. The data are taken from a reanalysis of a national evaluation of Norwegian SFOs. The results show several examples of new exclusion mechanisms occurring as old inequalities are addressed through social policy reforms. Examples from case studies are used to highlight and discuss the staff's reactions and actions when faced with dilemmas of meeting demands from the system while taking care of demands from the children.

This paper contributes to the scarce literature on factors affecting EdTech use in households. These factors were considered through exploratory mixed-methods analyses of cross-sectional data on Kenyan girls and caregivers, captured during the COVID-19 pandemic. Quantitative analysis of the child dataset (n = 544) suggested the importance of both structural factors--such as technology hardware availability--and non-structural factors--including caregiver permission. Findings were supported by a thematic analysis of interview data from girls' caregivers (n = 58), which emphasised the role they play in girls' use of EdTech. Interviews also highlighted numerous caregiver concerns with EdTech, related to the relevance and rigour of educational content, the possibility of children accessing age-inappropriate material and child health (especially eyesight). Policy makers could alleviate these concerns by providing guidance on EdTech use and clearly signalling their approval of verified initiatives.

Aim: To map existing evidence and identify gaps in the literature concerning psychosocial impacts of being nil by mouth (NBM) as an adult. Design: A scoping review of the literature was undertaken using JBI guidance. A protocol was registered on the Open Science Framework (osf.io/43g9y). Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta‐Analysis extension for Scoping Reviews (PRISMA‐ScR). Methods: A comprehensive search of six databases (CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS and Web of Science) was performed for studies published up to February 2023, with no restriction to study type. A scope of the grey literature was also undertaken. Two authors independently assessed eligibility and extracted data. Descriptive statistical analysis and narrative synthesis were used, and patient and public involvement included in funding discussions. Results: A total of 23 papers were included in the review, consisting of 14 primary studies (7 qualitative and 7 quantitative) and 9 grey literature. Both global psychological distress and distress specific to being NBM (thirst, missing food and drink) were reported. Caregivers also experience distress from their family member being NBM. Furthermore, social impacts were reported for both patient and caregiver, primarily social isolation and subsequent low mood. Conclusion: Furthermore, research is needed to understand the prevalence of this population, how best to measure psychosocial impacts and to explore whether (and how) psychosocial impacts change over time. Advancement in this area would enable better service development to optimize care for this patient group. What is known about this topic?: Eating and drinking provides more than nutrition and hydration.A wide range of conditions can lead to recommendations for no longer eating and drinking (nil by mouth).Being nil by mouth (NBM) for short periods such as pre‐operative fasting causes distress; however, little is understood about impact on longer‐term abstinence from eating and drinking. What this paper adds?: Psychosocial consequences of being nil by mouth (NBM)have been investigated by both quantitative and qualitative studies.Being NBM impacts both patients and caregivers in various psychosocial aspects, including distress and social isolation.Several gaps remain, however, regarding ways to measure psychosocial impact of being NBM. [ABSTRACT FROM AUTHOR]

The research protocol described aims to examine and establish the health outcomes of children and young people living in Out-of-Home Care (OOHC) in Perth, Western Australia (WA) from the perspective of the care recipients and service providers. A Study Advisory Panel (SAP) will be established comprised of Aboriginal Elders (because of the over-representation of Aboriginal children in OOHC), health professionals and other relevant stakeholders to help co-design all phases of the study. Mixed methods will be used in data collection and analysis. In the quantitative phase, it is proposed to collect retrospective data from three WA Department of Communities (DOC) districts. The data proposed to be collected includes: the number of children who received initial and annual health assessments, the health needs identified, and interventions put in place to address these needs. The qualitative phase will consist of interviews with service recipients (young people who have exited OOHC and Carers), health service providers (Community Health Nurses, School Nurses, General Practitioners and Paediatricians) and OOHC Case Workers. The research will provide an overview of the current health needs of children and young people in OOHC in WA and the perspectives of these young people, their Carers and service providers on current processes for accessing healthcare. It is anticipated that the study will provide valuable evidence for quality improvement in health service delivery to better meet the health needs of children and young people in OOHC. [ABSTRACT FROM AUTHOR]

Sustainable Development Goal Target 4.2.1 is monitored by determining the proportion of children aged 24 to 59 months who are developmentally on track in the domains of health, learning, and psychosocial well-being. UNICEF has developed a caregiver report measure, the Early Childhood Development Index 2030 (ECDI2030), to measure progress towards this target. This paper examines whether a newly developed tool, the Early Childhood Development Assessment Scale--Direct Assessment (ECDAS-DA) can add value to the measurement of Target Indicator 4.2.1 by complementing UNICEF's ECDI2030, and explores the psychometric properties of the ECDAS-DA. A total of 956 children (476 girls) aged 3 to 5 years from Bangladesh, China, India and Myanmar were administered the ECDAS-DA in individual sessions. Caregivers provided responses to a survey based on UNICEF's ECDI2030. Confirmatory Factor Analyses indicated that learning, health, and psychosocial well-being domains of the ECDAS-DA were three component parts of one underlying construct of early child development. Significant correlations between the ECDAS-DA and the caregiver-reported ECDI2030 survey were found in the learning and health domains but findings were mixed for the psychosocial well-being domain. Multiple measures of early development could be important in measuring SDG Target 4.2.1 and the ECDAS-DA has the potential to complement UNICEF's ECDI2030.

Inclusive education is enshrined in law and supported by the literature as best practice in education. Inclusive education has been shown to provide better academic, social and behavioural outcomes for children with disabilities than segregated learning environments. In the Northern Territory, Australia, however, the dual system of mainstream and special education persists and so too does segregation and exclusion. The Northern Territory education strategy commits to strengthening inclusion and empowering families in educational decision-making by listening to their voices. In this paper, we highlight some of these voices, examining the experiences and perspectives of caregivers of children with disabilities as they participate in education in the Northern Territory. Caregivers' experiences were coded into categories of inclusion and exclusion. Those that were not clearly inclusion nor exclusion were identified and the theme of non-inclusion was created. Non-inclusion was analysed thematically and is discussed as a nebulous space that exists for caregivers, presenting significant challenges that threaten their child's inclusion at school as they navigate this dual system. If Australian education systems are to provide genuine inclusive education, we need to understand the experiences of caregivers better so we can remediate the issues creating non-inclusion for children with disabilities and caregivers.

COVID-19 poses serious challenges to the health and safety of childcare providers, and these challenges were particularly acute in early 2022 during the first Omicron wave when vaccines were not available for children. Childcare providers work in environments where the recommended methods to minimize COVID-19 infection were often not possible to implement: children could not wear masks for extended periods and were not able to maintain physical distance. Under these pressures, Canada's already-fragile childcare sector was strained, caregivers struggled, and existing deficiencies were exacerbated. As part of a larger quality assurance and improvement project examining the impacts of the pandemic on childcare in the Canadian prairie province of Manitoba, this paper reports on qualitative findings to make public health and policy recommendations for the childcare sector. Data were voluntarily provided by a sample of childcare providers between January 6-13, 2022. A thematic analysis of open-text responses was performed, finding: an urgent need for health and safety resources; a need for sustained support and guidelines; and an absence of value and respect. We also identified an emergent theme of gratitude, which was reflected by an overwhelming number of thanks to the project team for listening to the voices of childcare providers. We draw on our qualitative analysis to propose measures to improve public health and safety, funding, and infrastructure, as well as to underscore the importance of systematic data collection and evaluation to protect and support the essential childcare workforce through the COVID-19 pandemic and into the future.

Professional development for sustainability in early childhood care and education (ECCE) has been perceived by experts as education that supports the workforce to acquire the right skills, attitudes, and knowledge that resonate through their practices to the benefit of the sector. Professional development for sustainability is aimed at providing quality and continuing development to the ECCE workforce to equip them with the relevant skills to perform their duties for the benefit of the children and society. This paper discusses practitioners' (n=211) professional development needs from a sustainability perspective and the impacts of some demographic features. The data were gathered through semi-structured interviews and questionnaire. The study found that practitioners' professional development was germane to the sustainability of the ECCE sector. The study further found that practitioners' perceptions of their professional development needs were independent of their marital status and age. Practitioners suggested that the transformation of communities depended on the sustainable provisioning of ECCE by a highly trained workforce.

Despite a focus on successful transitions to school, transition to School Aged Care (SAC) has largely been overlooked. This paper shares insights into transition programs provided for children commencing in SAC, at or close to their transition to school. Educators working in SAC programs in Victoria, Australia, participated in an online survey exploring their practices, beliefs, and understandings regarding children's transition into SAC in their Foundation year of school. Findings highlighted that whilst transition to SAC should be considered an integral component of a child's broader transition to school program, very few SAC programs are formally included in the process. Findings also showed that the programs that do offer transition to SAC programs for children commencing their Foundation year of school tend to design and implement these externally to the broader transition-to-school process. Furthermore, SAC educators share a strong consensus that clear integration of transitions into SAC and school should occur.

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]

Focussing on the experiences and perceptions of parents and volunteer caregivers of children with disabilities, this paper reports on a study that explored the provision of early childhood development and inclusive education for children with disabilities in rural Malawi. Drawing on a community-based participatory research (CBPR) design, ten local community researchers and two Malawian researchers collaborated to interview forty caregivers and parents of children with disabilities attending ten Community Based Care Centres (CBCCS) in Southern Malawi. Findings are reported through four key themes: experiences of disability, inclusion, learning and developmental progress; factors influencing non-enrolment and absenteeism; barriers to learning and progress; and accountability and support channels. Five key components were highlighted: (1) relevance of peer interactions for learning outcomes and wellbeing; (2) the importance of the CBCC as (a model for) a safe space against discrimination; (3) relevance of quality education and pre-school teacher training; (4) necessity of material support to decrease absenteeism; and (5) the need for greater community and state support for children with disabilities. The implications of the study's findings are discussed, including the importance and relevance of considering the perspectives of community based actors in program and policy design.

Family caregivers of people with dementia can find the impairments in their relative's ability to communicate an enormous challenge. Peer facilitated educational interventions are a potentially efficient and effective way to address these complex communication issues. This paper examines the processes required to support the development of peer educators and the impact this has had on facilitators and course attendees. Semi-structured interviews with six participants who facilitated Empowered Conversations (EC) a communication skills educational program for caregivers of people with dementia and 28 participants who attended the program. A qualitative thematic analysis approach identified emergent themes within the data. Three broad findings are reported: first the support that is needed for peer facilitators; second, the impact of the course reported by facilitators and course attendees; and third, suggestions for improvements. The content of the EC program is strong and the reflective cycle encouraged via support mechanisms prior to, during and following the delivery of sessions is effective for supporting facilitators. When upscaling the program it was important to enhance the support structures for new peer facilitators. Introducing a support session focusing on examples of logistical issues experienced and how these could be addressed would be a useful addition to the support mechanisms already devised. Attendees reported positively on participation in the course, particularly valuing the input from facilitators with experience of caregiving. Suggested improvements related to better information about the course and a settling in period, with some specific individual suggestions for content relating to their personal experiences.

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]

Purpose: The purpose of this paper is to provide a literature review on what is known about unpaid family carers who are at risk of or have experienced abuse from the people they provide care for and relevant policy/legal and practice responses for affected family carers. Design/methodology/approach: A literature search was carried out to locate literature relating to unpaid family carers who are at risk of or have experienced abuse from the people they provide care for. This also incorporated grey literature, including policy guidance and law, to determine the existing knowledge base, gaps in practice and areas that might require further research. Findings: The findings suggest that although carer harm is serious, it is under-researched. In addition, the unique needs of unpaid family carers who are at risk of or have experienced abuse, violence and harm from the people they provide care for are subsumed in safeguarding policy/law processes and practice under the auspices of the protection of "adults at risk" rather than the protection of "carers at risk". Research limitations/implications: It is important that those who support unpaid family carers who are at risk of abuse and harm know about their unique safeguarding needs and concerns to offer appropriate support. It is also apparent that policy and law need to address the gap in provision relating to the unique safeguarding concerns involving the abuse of unpaid family carers by the people they provide care for. This paper is based on this literature review and not on other types of research. Originality/value: The paper provides insights into what is known about the abuse of unpaid family carers by the people they provide care for, and the policy/legal and practice responses to affected unpaid family carers. It contributes to the body of knowledge on carer abuse and safeguarding carers from abuse and harm. [ABSTRACT FROM AUTHOR]

Introduction: People with a borderline personality disorder (BPD) diagnosis or symptoms may experience emotional crises which necessitate use of the emergency department (ED). No existing reviews focus specifically on experiences of consumersa, carersb and clinicians in relation to ED presentations by people diagnosed with BPD. Aim/Question: The aim of this study was to synthesise knowledge on consumer, carer and clinician experiences of BPD in the ED. Method: An integrative review methodology was chosen as it best captures the complexity of varied perspectives and emergent phenomena from diverse literature sources. EMBASE, CINAHL, PsycInfo and Medline were searched for papers published before 16 February 2022. Results: Nine papers met the inclusion criteria (five qualitative, one quantitative, one mixed methods and two letters to the editor). Key themes were barriers to timely and adequate care, and stigmatising attitudes and practices towards people diagnosed with BPD. Negative attitudes were perceived to perpetuate harmful outcomes and further ED visits. Discussion: Predominantly negative ED experiences were expressed by clinicians, consumers and carers. Further work is needed in ED models of care and staff education to improve the experience of care for consumers, carers and clinicians alike. Implications for Practice: Opportunities for change will exist through co‐designed innovation, education, advocacy and leadership. [ABSTRACT FROM AUTHOR]

Purpose: As populations are ageing and the global average life expectancy is rising, the provision of care for older people is an increasingly salient issue. This paper aims to focus on family-provided care for older immigrants, examining how older immigrants and care providers experience and construct family caregiving. Design/methodology/approach: Based on interviews with care recipients, family care providers, municipal staff and representatives for migrant organisations in Sweden, this study presents a typology of family caregiving for older immigrants. Findings: The authors found three caregiving types, namely, solely family-provided care and a combination of family care and public care (predominantly one or the other). The decision to select family-provided or publicly-funded care depends on personal and institutional factors. Originality/value: The paper makes three empirical contributions to the literature on care provision for older immigrants. Firstly, this study provides insights into the structural and personal factors that shape care-giving arrangements for older immigrants. Secondly, this study examines the perspectives of care recipients and care providers on family-provided care. Care expectations differ between both groups and sometimes result in intergenerational disagreement. Thirdly, in terms of institutional support, this study finds that the Swedish state's notion of individual needs does not match the needs of immigrant elderly and their caregivers. The paper places the care types in a broader discussion about eldercare provision in the Swedish welfare state, which has experienced a decline in publicly funded care services and an increase in family caregiving in the past 30 years. In addition, it addresses questions of dignified ageing from a minority perspective. [ABSTRACT FROM AUTHOR]

Intellectual disability (ID) is an emerging field of research in Nigeria. This review seeks to identify what has been published in order to describe the evidence and to identify the major gaps in knowledge and practice. A systematic search of five databases and an African disability journal yielded 15 papers that reported on empirical studies related to people with ID in Nigeria. Fifteen studies across the databases and journal searched met the inclusion criteria. The participants included adults and children with ID and their families. Twelve of the papers employed quantitative methods, two were qualitative and one was a mixed methods study. There is a paucity of empirical research on people with ID in Nigeria, thus emphasising the need for more primary research about people with ID living in Nigeria. Nigeria is estimated to have the largest population of people with disabilities in Africa; however, this review found limited empirical work regarding their lives, prevalence and care. This limited evidence hinders the understanding of the challenges people with an intellectual disability face and potentially inhibit the creation of policy-oriented solutions to their plights in a globalised world. [ABSTRACT FROM AUTHOR]

High health literacy (HL) is important to optimise health outcomes, particularly for older people (who are substantial consumers of health services) and their adult caregivers. The aim of this systematic review was to evaluate measurement properties of HL instruments tested with these population groups. Six databases (MEDLINE (OVID); CINAHL; EMBASE (OVID); PsycInfo; Scopus; Cochrane Library) were searched for studies evaluating eight measurement properties of HL tools administered to older people or their caregivers. Only studies evaluating multi-domain self-report HL tools were included in analyses, using the COSMIN methodology. From 4261 unique papers located, 11 met inclusion criteria; six reported measurement properties of three HL self-report tools administered to older people (HLQ, eHEALS, and HeLMS) so are reported in this review, none involved caregiver samples. The HLQ and HeLMS were rated "moderate," and eHEALS "low" for tool development. The HLQ, examined in four included studies, had the highest ratings and quality of evidence across the three measurement properties investigated in included papers. The HLQ was the most highly rated self-report HL tool of just three tested with older people. Further studies evaluating measurement properties of self-report HL tools used with older people and/or their caregivers are needed. Health literacy is important to optimise health outcomes of interventions for older people and their adult caregivers. Few studies have evaluated measurement properties of self-report / multi-domain health literacy tools for this population. The Health Literacy Questionnaire (HLQ) had the highest ratings and quality of evidence across the three measurement properties investigated in included studies, and is recommended for use in rehabilitation settings. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [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]

This scoping review aims to examine the caregiving experiences of Korean American caregivers of persons with dementia. A comprehensive electronic search was conducted within 5 databases (PubMed, CINAHL, Web of Science, Embase, PsycINFO-ProQuest) for papers published from 01/01/00 −01/24/22. Seventeen articles met the inclusion criteria. Thematic analysis was used to summarize key findings from these papers. Most Korean American dementia caregivers were immigrants and wives/daughters/daughters-in-law. Two themes emerged: 1) how Korean American caregivers perceived their caregiving experiences, and 2) how Korean American caregivers perceived their caregiving support services. Korean American caregivers often experience poor mental health and burden. Social support and familism were found to be two of the most important factors that determine their attitudes toward caregiving. Most reported barriers to utilizing public services. Challenges in finding culturally relevant resources were common. Dementia caregiving is a significant public health problem facing Korean Americans. Recommendations for future research are provided. [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]

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

OBJECTIVES: (1) Assess whether health-related social needs (HRSN)/caregiver mental health concerns (CMHC) disclosure rates differ when screening questions are administered on paper versus electronic tablet. (2) Evaluate whether changes in need identification alters referral rates to social work and our medical-legal partnership (MLP). METHODS: We conducted a retrospective review of HRSN/CMHC screening in publicly insured patients 0-18 years presenting for well-child visits in three primary care practices. Our primary outcome was HRSN/CMHC disclosure rate, comparing the proportion of positive HRSN/ CMHC screens during the 11 months before and after screening modality change. Generalized estimating equations and interrupted time series (ITS) were used to assess changes over time. Mediation analyses assessed the indirect effect of HRSN/CMHC disclosure during the electronic screening period on changes in referrals to social work/MLP. RESULTS: A total of 16,151 patients had paper-based HRSN/CMHC screens; 13,019 patients had electronic screens. Overall, 11% of paper-based screens identified ≥1 need, compared to 26% of electronic screens (p<0.001). All three practices saw an increase in disclosure rate after transition from paper to electronic screening (odds ratio [OR] range 1.54 to 4.24). Using ITS, two of three practices had significantly increased odds of need disclosure with electronic screens compared to paper (OR 3.0, 95% confidence interval [CI] 2.5, 3.6; and OR 1.7, 95%CI 1.2, 2.4). Increased HRSN/CMHC disclosure rates from transitioning to electronic screening mediated increased referrals to social work/MLP. CONCLUSIONS: Electronic screening was associated with an increased HRSN/CMHC disclosure rate compared to paper, which led to increased referrals to social work/MLP. [ABSTRACT FROM AUTHOR]

Background: In Germany, live-in migrant carers provide essential social, emotional and physical support to a growing number of community-dwelling people with dementia. However, opaque legal regulations and employment models as well as a lack of formal supervision for families employing live-in migrant carers contribute to the vulnerability of these already strained arrangements. This study analyses the family caregivers' perspective, their conceptualisations of good dementia live-in migrant care and conflicts that arise in live-in care arrangements. Methods: The study adopted a qualitative-explorative approach. We conducted focus groups with family caregivers (n = 15) to learn about their perspectives on and experiences with live-in care as a model of home-based dementia care. Due to the restrictions of the COVID-19 pandemic, data collection took place online, which enabled us to include participants from all over Germany in our sample. Data were analysed with qualitative content analysis. Results: In this paper, two main categories, Indicators of good live-in migrant care for people with dementia and perceived conflicts, are presented. We identified indicators applied by family caregivers to assess the quality of care provided by migrant live-in carers and its outcomes for the person with dementia. These relate primarily to interpersonal and emotional aspects and a person-centred attitude towards the person with dementia. Conflicts arise when the needs and personalities within the triad do not match, due to intransparent and unreliable work of and communication with the placement agencies, or permanent crisis as a result of the German model with alternating live-in carers. Conclusion: Our findings point to the complex dynamics and relationships within live-in care triads and support the theoretical assumption that taking into account the needs of all actors involved is essential for good and stable care arrangements. The conceptualisations of family caregivers of good dementia live-in migrant care offer starting points for a scientific as well as a social and health policy debate about the future regulation of this model of care. [ABSTRACT FROM AUTHOR]

This paper considers the ways that publicly funded developmental services for adults with developmental disabilities in southern Ontario are limited in how they support clients. This paper is informed by field research conducted in the summer of 2019, which was composed of semi-structured interviews, focus groups, and a policy review. Informed by parent advocates who are the main caregivers of their adult children labelled with intellectual and developmental disabilities, this paper claims that the administrative processes of the Ontario ministry that manages and funds adult disability services relate to broader exclusionary patterns among adults with developmental disabilities. I explore this claim by reviewing how common ableist assumptions of people with developmental disabilities are ingrained in the policies and administrative processes of these services. I contribute to ongoing discussions among Critical Disability Scholars of the ways that disability as a social category can be articulated outside of ableist assumptions. Informed by parent caregiver perspectives, this article outlines how the limitations of provincially funded disability services in Ontario, Canada cause significant challenge in the lives of those labelled with intellectual and developmental disabilities. One possible explanation for these limitations is that there is a disconnect between how the provincial government classifies who should receive immediate services and how many services, versus the actual need of those labelled with intellectual and developmental disabilities. The criteria for high supports, such as monthly funding, placement into a living facility, and the provincial assessment for determining a person's 'adaptive functioning' are rooted in problematic assumptions made of people labelled with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Background: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia. Methods: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. Results: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. Conclusion: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients. [ABSTRACT FROM AUTHOR]

Aims: A discussion of the personal and social contexts for Millennial family caregivers and the value of including complex identity and intersectionality in Millennial family caregiving research with practical application. Design: Discussion paper. Data sources This discussion paper is based on our own experiences and supported by literature and theory. Implications for Nursing: Millennial family caregivers have distinct generational, historical and developmental experiences that contribute to the care they provide as well as their own well‐being. Complex identity, the integration of multiple identities, and intersectionality, systems and structures that disempower and oppress individuals with multiple identities, need to be addressed in nursing research so intervention tailoring and health equity can be better supported in this population. From research conceptualization and design to data analysis, data must be used intentionally to promote equity and reduce bias. The inclusion of diverse Millennial caregivers throughout all stages of the research process and having a diverse nursing research workforce will support these efforts. Conclusion: Millennial family caregivers comprise one‐quarter of the family caregiving population in the United States, and they are more diverse than previous family caregiving generational cohorts. Their needs will be more fully supported by nursing scientists with the adoption of methods and techniques that address complex identity and intersectionality. Impact: Nursing researchers can use the following research approaches to address complex identity and intersectionality in Millennial caregivers: inclusion of qualitative demographic data collection (participants can self‐describe); data disaggregation; data visualization techniques to augment or replace frequencies and descriptive statistics for demographic reporting; use of researcher reflexivity throughout the research process; advanced statistical modelling techniques that can handle complex demographic data and test for interactions and differential effects of health outcomes; and qualitative approaches such as phenomenology that centre the stories and experiences of individuals within the population of interest. [ABSTRACT FROM AUTHOR]

As the ageing population in China continues to grow, more people will be living with long-term health conditions and require support from family care-givers. This scoping review therefore aims to explore sources of stress and coping mechanisms adopted by care-givers of older relatives living with long-term conditions in mainland China. Literature searches were conducted in English (CINAHL, EMBASE, MEDLINE, PsycINFO and SCOPUS) and Chinese (CNKI, WANFANG DATA, CQVIP and CBM) databases between October and November 2019. The searches focused on the stressors and coping mechanisms utilised by family care-givers residing in the community. Narrative synthesis was used to identify themes within the data. Forty-six papers were included: 20 papers from English and 26 from Chinese databases. Six themes captured stressors: care-giving time (N = 22), financial resources (N = 17), role and personal strains (N = 42), preparedness (N = 4), social roles (N = 10) and lack of adequate formal support (N = 22); and one theme captured coping (N = 14). Unmet needs of care-givers of older relatives in mainland China were found to be extensive. Only a few studies had attempted to explore the causal link between stressors, coping and the influence of culture. Findings underscore the significance of adequately capturing intricacies around care-givers' unmet needs, rather than generalising on the basis of culture. Qualitative studies are critical to providing a better understanding of the relationship between stressors, coping and resources afforded to care-givers by their cultural environment. Having such understanding is crucial to inform the development of competent care, which promotes self-efficacy and self-actualisation in care-givers in mainland China. [ABSTRACT FROM AUTHOR]

Inclusive education is enshrined in law and supported by the literature as best practice in education. Inclusive education has been shown to provide better academic, social and behavioural outcomes for children with disabilities than segregated learning environments. In the Northern Territory, Australia, however, the dual system of mainstream and special education persists and so too does segregation and exclusion. The Northern Territory education strategy commits to strengthening inclusion and empowering families in educational decision-making by listening to their voices. In this paper, we highlight some of these voices, examining the experiences and perspectives of caregivers of children with disabilities as they participate in education in the Northern Territory. Caregivers' experiences were coded into categories of inclusion and exclusion. Those that were not clearly inclusion nor exclusion were identified and the theme of non-inclusion was created. Non-inclusion was analysed thematically and is discussed as a nebulous space that exists for caregivers, presenting significant challenges that threaten their child's inclusion at school as they navigate this dual system. If Australian education systems are to provide genuine inclusive education, we need to understand the experiences of caregivers better so we can remediate the issues creating non-inclusion for children with disabilities and caregivers. [ABSTRACT FROM AUTHOR]

Background: Critical illness and the intensive care unit can be a terrifying experience to patients and relatives and they may experience the extreme life‐saving measures as dehumanizing. Humanizing intensive care is often described as holism or dignity, but these abstract concepts provide little bodily resonance to what a humanized attitude is in concrete situations. Objective: To explore what contributes to patients' and relatives' experience of intensive care as humanized or dehumanized. Design: Thematic synthesis. Materials: Findings from 15 qualitative papers describing patients' and/or relatives' perceptions of humanizing or dehumanizing care. Methods: A systematic literature search of PubMed, CINAHL, Scopus and EMBASE from 1 January 1999 to 20 August 2022 identified 16 qualitative, empirical papers describing patients' and relatives' experiences of humanizing or dehumanizing intensive care, which were assessed using Critical Appraisal Skills Programme Qualitative Checklist, 15 papers were included and analysed using Thematic Synthesis and Ricoeur's model of the text. Findings Intensive care was humanized when patients felt connected with healthcare professionals, with themselves by experiencing safety and well‐being and with their loved ones. Intensive care was humanized to relatives when the patient was cared for as a unique person, when they were allowed to stay connected to the patient and when they felt cared for in the critical situation. Conclusion: Patients and relatives experienced intensive care as humanized when healthcare professionals expressed genuine attention and supported them through their caring actions and when healthcare professionals supported patients' and relatives' opportunities to stay connected in the disrupted situation of critical illness. When healthcare professionals offered a connection to the patients and relatives, this helped them hold on and find meaning. Patient or Public Contribution: No patient and public contribution. [ABSTRACT FROM AUTHOR]

Purpose: A systematic review of the literature was completed to examine the needs of those who provide care to people with intellectual disability and dementia. The purpose of this paper was to develop an understanding of the complexities, challenges and support available to meet the needs of an ageing population. Design/methodology/approach: A qualitative evidence synthesis was used to appraise 12 studies. An evidence synthesis approach was used to better understand the challenges caregivers experience in caring for a person with intellectual disability and dementia. Aggregating and integrating findings from multiple studies allowed to identify inconsistencies, quality, relationships and trends to enhance the awareness of gaps in care provision. Findings: There were six main domains identified from the available literature which included: gaps in knowledge and skills, early identification of dementia and associated difficulties, managing behaviour, coping, burden of care and Impact on confidence. Originality/value: To the best of the authors' knowledge, this is the first paper to use qualitative evidence synthesis to understand the challenges of caring for a person with intellectual disability and dementia. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer patients often present with numerous eating problems, posing a significant challenge for family caregivers during the provision of nutritional care. Aim: To systematically identify and synthesize empirical literature on the experiences, perceptions, and support needs of family caregivers of patients with advanced cancer and eating problems to ascertain directions for future research. Design: Integrative review guided by Whittemore and Knafl's methodological framework. Data sources: Five electronic databases were searched from their inception to April 2021. Studies were eligible if they examined family caregivers' perspectives and experiences when caring for their relatives with advanced cancer and eating problems and were primary quantitative, qualitative, and mixed-methods studies published in English-language peer-reviewed journals. The Mixed Methods Appraisal Tool was used to evaluate the quality of the studies. Results: Twenty-seven papers from 21 studies met the eligibility criteria and were included in this review. The included papers were mostly qualitative studies and were of moderate to high methodological quality. Three themes were identified: (a) multiple negative effects of advanced cancer patients' eating problems; (b) coping responses in managing advanced cancer patients' eating problems; and (c) unmet support needs in the provision of nutritional care. Conclusions: Research on the studied topic was descriptive and predominantly qualitative in nature. Quantitative research examining the impact of caregiving experiences in relation to food and eating in the context of advanced cancer patients is the first important step moving this research area forward. [ABSTRACT FROM AUTHOR]

Aims: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. Design: Experience‐based co‐design. Methods: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. Results: Twenty‐three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient–provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow‐up care. Conclusion: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. Implications for the Profession and/or Patient Care and Impact: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. Reporting Method: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. Patient or Public Contribution: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience‐based co‐design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co‐design events, to support symptom management for people with multimorbidity. [ABSTRACT FROM AUTHOR]

Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student's school environment and explores how schools can develop comprehensive, sustainable support systems for young carers—systems that consider and involve as many actors as possible in the student's school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and "invisible" young carers, as well as other students. [ABSTRACT FROM AUTHOR]

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians—being listened to empathetically and receiving reassurance—can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them. [ABSTRACT FROM AUTHOR]