Search

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]

Background: Previous research has demonstrated that many caregivers of care recipients with communication and swallowing impairments suffer from caregiver burden. Existing research sheds light on the presence of burden and various predicting factors, but little information on interventions to reduce caregiver burden. Aims: To determine how speech–language pathologists (SLPs) address caregiver burden in clinical practice. Methods: A systematic review was conducted according to PRISMA guidelines and 1898 unique articles were assessed for eligibility from nine electronic databases. Only 11 studies carried out a caregiver burden intervention involving an SLP. Details of the interventions were extracted per the Rehabilitation Treatment Specification System (RTSS) guidelines. Main Contribution: Results of the review revealed that SLP‐led caregiver burden interventions can be effective in reducing burden. Multiple aspects of the intervention approaches, such as multidisciplinary care and targeting emotional burden, are discussed. Demographic factors, such as gender and socio‐economic status (SES), are also taken into consideration. Conclusions & Implications: This review suggests that SLPs can be effective at reducing caregiver burden through interventions involving caregivers across the lifespan and continuum of care. What This Paper Adds: What is already known on this subject: Previous research has demonstrated that many caregivers of care recipients with communication and swallowing impairments suffer from caregiver burden. These caregivers range from parents of young children to spouses of individuals with dementia. However, it is unclear if and how SLPs address caregiver burden in clinical practice. What this paper adds to existing knowledge: Using the RTSS, details of various caregiver burden interventions involving SLPs were identified. This review revealed that SLP‐led caregiver burden interventions can be effective in reducing emotional and financial burden, as well as play a part in improving care–recipient outcomes. What are the potential or actual clinical implications of this work?: This systematic review demonstrates that efforts to reduce caregiver burden within SLP practice may yield benefits for both caregivers and care recipients. It provides clinicians with a preliminary resource to help consider caregiver burden interventions that best suit the needs of the caregivers and their care recipients. [ABSTRACT FROM AUTHOR]

Aim: The aim of this research is to identify the main approaches and domains of palliative care quality assessment through three questionnaires used for this purpose. Design: Systematic review. Methods: The proposed analysis process consists of three stages from 2000 to 2020: (i) massive literature search, (ii) text mining and (iii) systematic reviews carried out on the QLQ C30, Zarit Burden Interview and FAMCARE questionnaires. The Preferred Reporting Items for Systematic Reviews (PRISMA‐P) have guided our research. Results: Sixteen papers were included in our study. The main findings have been summarised using a descriptive narrative synthesis approach. Systematic reviews evidenced that such tools present variable factor structures or latent domains. The results obtained are generally representative of the evidence supporting the factor structure of the QLQ‐C30 in the general cancer population. The factor structure of the Zarit Burden Interview remains ambiguous, although the idea of a unifactorial structure predominates. In the case of FAMCARE, most of the factor structures differ from the initial proposal of Kristjanson. The categorisation of the main subjective assessment approaches could be useful for the construction of a coherent system of indicators to be used in nursing practice. For its part, the variability in the latent dimensionality of the questionnaires analysed could be due to: (i) the characteristics of the sample, (ii) the population studied, (iii) cross‐cultural variability, (iv) the design of the questionnaire and (v) the analysis techniques employed. [ABSTRACT FROM AUTHOR]

Background: Primary progressive aphasia (PPA) describes a group of language‐led dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves. Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs. Methods & Procedures: A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis. Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified. Conclusions & Implications: This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person‐centred approach that considers the broader needs of both the PwPPA and the people around them. This will enable service providers to deliver SLT that meets the needs of PwPPA and their families and will also inform future research in this field. WHAT THIS PAPER ADDS: What is already known on this subject: We know that PwPPA can maintain or even make improvements in word retrieval and speech fluency with SLT exercises. There is also developing evidence of the benefits of interventions such as CP training, communication aid support and other functional interventions. What this paper adds to existing knowledge: This study provides an understanding of the experiences and opinions of people living with PPA and their families in relation to SLT. Results demonstrate that PwPPA and their families have to navigate a complex journey, identifying strategies to support communication but also the influence of personality and other cognitive symptoms. SLT was useful, but not always available. What are the potential or actual clinical implications of this work?: This study will enable service providers to better plan, justify funding for and delivery of SLT that will meet the needs of PwPPA and their families. Most importantly this work underlines the importance of a person‐centred approach, incorporating the broader needs of the person with PPA and those around them. [ABSTRACT FROM AUTHOR]

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

This paper examines, both theoretically and empirically, the relationship between rapid‐onset disasters and women's economic freedom. Rapid‐onset disasters create difficulties for all involved, but without proper discussion of and changes to women's economic status in society, they will continue to suffer disproportionately. The study answers the following question: 'how do disasters impact women's economic empowerment?'. It argues that there are underlying factors contributing to unequal economic opportunities that are exacerbated by disasters. Current literature discusses how disasters affect women's economic and political rights, but often it does not account for variables that may not have been captured in contemporary indices. The paper assesses women's burden of care, restrictions on mobility, formal economic employment, and access to recovery resources with respect to their economic empowerment. And it analyses 180 countries and territories that experienced disasters between 1981 and 2019 to uncover their effects on women's economic freedom. This research could facilitate and help to alter the overall narrative on women's empowerment. [ABSTRACT FROM AUTHOR]

Unequal distribution of child rearing and domestic responsibilities between parents contributes to gender inequity, a wicked problem in Australia. Inequitable parental leave policies at Australian public Universities place the burden of care squarely on the mother, diminishing or absenting the father. We examine how the gendered nature of the existing policies are constructed in ways that create inequities and discourage their uptake. A post‐structural feminist lens provides us with a theoretical vantage point from which this wicked problem can be problematized. We present three recommendations for enabling more equitable outcomes for parents. The first is to eradicate the punitive approach and support flexibility; second, the policies must be parental leave in name, provision and practice; and finally we recommend a minimum parental leave standard for Australian universities nationally. These findings have policy‐level significance for redressing parental leave inequity within the Australian university context. The paper concludes with theoretical contributions, practical implications, and suggestions for future research. [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]

Metaphors are valuable tools of expression, which give meaning to situations and allow the spontaneous processing of feelings and emotions. As therapists, we can support clients to develop and create their individual metaphor to explain their own meaning of experiences or communicate their perception of problems. Creativity provides us with a rich landscape to explore, expand, and enrich ourselves as therapists and consequently our clients. As systemic therapists, we are responsible for the co‐creation of a human process, which has at its core safety in allowing expression, connection, and movement. Through a respectful and curious approach, we can develop pathways to tap organically into our 'creative selves' while reaching into our clients' creativity and selves as catalysts for connection and positive change. Creative resources and therapies have been successfully used in psychotherapy to enhance the mental and emotional well‐being of children, particularly children with autism who have limited verbal capacity or who are non‐verbal. These children also wish to be understood in expressing their thoughts and feelings; however, they use other methods of communication – sometimes obvious, sometimes not. Therefore, it is important that a therapist can access diverse ways to support the child through this process. The creative use of animals in therapy neutralises spaces, eliciting calm, safety, and healing. This is particularly the case when working with this group of children. This paper is derived from my conversation with an elder statesman of the family therapy profession, Professor Carmine Saccu. He is a jovial master storyteller who craftfully communicates via metaphors. Through creative means, play, and humour, he has developed a remarkably unique way of working with children, especially non‐verbal children with autism. He uses his canine, co‐therapist Mafalda, as a powerful resource and intervention strategy to safely elicit engagement and connection in the therapeutic space. [ABSTRACT FROM AUTHOR]

In this paper, I create a framework that explains how homelessness reduces a child's attachment security. Attachment theory states how over time and repeated interactions, children and caregivers develop patterns of behavior that foster the development of children's schemas about what to generally expect from relationships with others. In order for children to develop secure attachments, a caregiver must be consistent and sensitive when responding to their child. Homeless caregivers have to juggle many stressors at once and therefore have fewer mental or physical resources (the effects of caregiver stress) to devote to consistent, sensitive, and responsive caregiving. This theoretically grounded framework proposes that stressors affect homeless caregivers, which in turn affects their effective parenting effort, which ultimately impacts the child's attachment. I describe in detail each of the proposed associations in the framework and summarize existing literature that supports these theoretical processes. Limitations and future directions are also discussed. [ABSTRACT FROM AUTHOR]

Aim: To determine whether functional impairments and autonomic symptoms are correlated in young people with developmental and epileptic encephalopathies (DEEs). Method: Cross‐sectional, online surveys (2018–2020) of parents recruited from family groups obtained information on several aspects of children's conditions including functional abilities (mobility, hand use, eating, and communication), 18 autonomic symptoms in six groups (cardiac, respiratory, sweating, temperature, gastrointestinal, and other), and parental stress. Bivariate and multivariable logistic regression analyses examined associations of dysautonomias with functional impairment, adjusted for type of DEE and age. Results: Of 313 participants with full information on function and dysautonomias, 156 (50%) were females. The median age was 8 years (interquartile range 4–12y); 255 (81%) participants had symptoms in at least one autonomic symptom group; 283 (90%) had impairment in at least one functional domain. The number of functional impairment domains and of autonomic symptom groups varied significantly across DEE groups (both p<0.001). The number of functional impairment domains and of autonomic symptom groups were correlated (Spearman's r=0.35, p<0.001) on bivariate and multivariable analysis adjusted for DEE group and age. Parental stress was also independently correlated with dysautonomias (p<0.001). Interpretation: Parent‐reported dysautonomias are common in children with DEEs. They correlate with extent of functional impairment and may contribute to caregiver stress. What this paper addsDysautonomic symptoms are common in young people with developmental and epileptic encephalopathies (DEEs).Burden of dysautonomias is strongly correlated with burden of functional impairments.Aspects of dysautonomic function may provide biomarkers of DEE disease severity. What this paper adds: Dysautonomic symptoms are common in young people with developmental and epileptic encephalopathies (DEEs).Burden of dysautonomias is strongly correlated with burden of functional impairments.Aspects of dysautonomic function may provide biomarkers of DEE disease severity. This original article is commented by Rheims on page 1367 of this issue. [ABSTRACT FROM AUTHOR]

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

This paper presents current information on policy developments, service design, best practices, and approaches to empower the users of health and medical care services for people with intellectual disabilities in Poland. Polish regulations allow systemic support to be provided for all people with disabilities. However, Polish patients with intellectual disabilitiy (PwID) and their caregivers face many barriers. Although a key obstacle is the lack of a standard definition that approaches disability in an interdisciplinary way, PwID are also more likely to experience difficulties in personal communication in medical settings and less likely to encounter specialists prepared to work with this group. There is also a need to pay greater attention to the expectations of PwID. To facilitate a holistic approach to diagnosis and therapy, there needs to be coordination between different specialists, including medical staff, paramedics, psychologists, and teachers. Providing personal communication training for medical personnel, as well as developing dedicated procedures for PwID in primary health care, clinics and hospitals, will improve equal access to health and health literacy for all in Poland. Even so, it is important to respect the autonomy of PwID and the commitment of caregivers. [ABSTRACT FROM AUTHOR]

Background: Eating disorders in childhood and adolescence negatively affect many areas of development and functioning of children, adolescents, and their families. Psychoeducation has an important role in management and treatment of eating disorders. Methods: A systematic literature review was performed using multiple databases (PsycInfo, PubMed, and Web of Science). The inclusion criteria comprised empirical studies of psychoeducation for patients with eating disorders or their caregivers. The study reporting quality was assessed with the revised Cochrane Collaboration's risk of bias tool and the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields for non‐randomized studies. Results: Ten studies met the inclusion criteria, in three of which the interventions were patient‐centred and in seven of which the interventions were caregiver‐centred. The studies differed in terms of methodology, outcome measures, and quality. The results suggest that psychoeducation is an effective intervention for children, adolescents and caregivers in the treatment of eating disorders. It may lead to weight gain, a decrease in eating disorder symptoms, and a reduction in caregiver burden. Conclusions: There is a need for more randomized controlled trials to determine the effectiveness of psychoeducation for children, adolescents and caregivers in treatment of eating disorders. Key points: Eating disorders in childhood and adolescence negatively impact many areas of development and functioning in children, adolescents, and their families.Psychoeducation for children, adolescents and parents plays an important role in the treatment of eating disorders.Psychoeducation can lead to positive outcomes for patients, their caregivers or both. It can lead to weight gain, a decrease in eating disorder symptoms, and a reduction in caregiver burden.Psychoeducation appears to be an effective treatment for eating disorders, but there is a need for more randomized controlled trials in this area. [ABSTRACT FROM AUTHOR]

Background: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study. Methods: The IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS. Findings: In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard. Conclusions: There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling. Accessible Summaries: When the parents of people with intellectual die or can no longer provide care and support, brothers and/or sisters may take over the role.Little is known about the lives of these brothers and sisters and whether they need support.Our study asks brothers and sisters about their lives, their health and the good and more difficult things about being a carer.This paper reports on the results of four surveys over 9 years.Most brothers and sisters felt that their health was good but because many reported health problems, more support should be available to brothers and sisters who are carers. [ABSTRACT FROM AUTHOR]

Background: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure. Aims: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps. Materials & Methods: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid‐2020. Results: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members' reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health‐related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease‐centered approach. Discussion: This scoping review provides insight into a variety of healthcare practices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family‐focused approaches as integral models could lead to practices that improve families' well‐being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health. [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]

Aim: To investigate whether resilience mediates the connection between caregiver burden and hope among caregivers of patients with inflammatory bowel disease (IBD). Design: A cross‐sectional study. Methods: Two hundred patients with IBD were conveniently sampled from two tertiary hospitals in Jiangsu Province, China. The main instruments involved the Zarit Burden Interview, the 10‐item Connor‐Davidson resilience scale, and the Herth Hope Index. We conducted descriptive analysis and Pearson correlations using SPSS 25.0. The PROCESS v3.3 macro analysed the mediating effect. We report the results in line with the STROBE checklist. Results: Caregiver burden was significantly negatively connected with hope and resilience, whereas resilience positively correlated with hope. The mediation role of resilience was significant in the relationship between caregiver burden and hope, with mediating effects accounting for 47.86% of the overall effect. Conclusions: Resilience partially mediates the association between caregiver burden and hope among patients with IBD. This finding highlights the protective role of resilience in undermining caregiver burden and strengthening hope. Implications for Practice: In clinical practice, healthcare providers should perform routine psychological assessments for caregivers of patients with IBD. Furthermore, resilience training should be incorporated into interventions to alleviate caregiver burden and enhance hope. Patient or Public Contribution: None. [ABSTRACT FROM AUTHOR]

Respiratory syncytial virus (RSV) is the most common cause of acute respiratory infections in young children. Limited data are available on RSV disease burden in primary care and emergency departments (EDs). This review synthesizes the evidence on population‐based incidence rates of RSV infections in young children (< 5 years) in primary care and EDs. A systematic literature review was performed in PubMed and Embase. Studies reporting yearly population‐based RSV incidence rates in primary care and EDs were included. A total of 4244 records were screened and 32 studies were included, conducted between 1993 and 2019. Studies were mainly performed in high‐income countries (n = 27), with 15 studies in North America and 10 studies in Europe. There was significant variability in study methodology and setting among studies, resulting in considerable variability in reported incidence rates. Incidence rates were higher in primary care—ranging from 0.8 to 330 (median = 109) per 1000 population—compared to EDs (7.5–144.0, median = 48). The highest incidence rates were reported in infants. Additionally, incidence rates were higher in high‐income countries and in studies using laboratory‐confirmed RSV cases compared to studies using bronchiolitis ICD‐codes (non–laboratory confirmed). Our study found that a substantial number of children under 5 years of age attend primary care settings and EDs, every year for RSV infections. Due to the considerable heterogeneity in study methodology, it was impossible to draw definitive conclusions regarding factors explaining differences in reported incidence rates. Additionally, more studies in low‐ and middle‐income countries are recommended. [ABSTRACT FROM AUTHOR]

Introduction: Human respiratory syncytial virus (RSV) is one of the most frequent causes of respiratory infections in children under 5 years of age, but its socioeconomic impact and burden in primary care settings is still little studied. Methods: During the 2022/2023 winter season, 55 pediatricians from five Italian regions participated in our community‐based study. They collected a nasal swab for RSV molecular test from 650 patients under the age of 5 with acute respiratory infections (ARIs) and performed a baseline questionnaire. The clinical and socioeconomic burden of RSV disease in primary care was evaluated by two follow‐up questionnaires completed by the parents of positive children on Days 14 and 30. Results: RSV laboratory‐confirmed cases were 37.8% of the total recruited ARI cases, with RSV subtype B accounting for the majority (65.4%) of RSV‐positive swabs. RSV‐positive children were younger than RSV‐negative ones (median 12.5 vs. 16.5 months). The mean duration of symptoms for all children infected by RSV was 11.47 ± 6.27 days. We did not observe substantial differences in clinical severity between the two RSV subtypes, but RSV‐A positive patients required more additional pediatric examinations than RSV‐B cases. The socioeconomic impact of RSV infection was considerable, causing 53% of children to be absent from school, 46% of parents to lose working days, and 25% of families to incur extra costs. Conclusions: Our findings describe a baseline of the RSV disease burden in primary care in Italy before the introduction of upcoming immunization strategies. [ABSTRACT FROM AUTHOR]

Introduction: Predicting caregiver burden in individuals with suspected dementia – is critical due to the debilitating nature of these disorders and need for caregiver support. While some examination of the factors affecting burden has been undertaken in Sub‐Saharan Africa, each country presents with its own unique challenges and obstacles. This pilot study investigates predictors of caregiver burden in family caregivers of individuals with suspected dementia living in the Democratic Republic of the Congo (DRC). Methods: Linear and multiple regression analyses were conducted to explore factors associated with caregiver burden in 30 patient‐caregiver dyads with the Zarit Burden Interview (ZBI) for caregiver burden evaluation. Cognitive impairments of patients were assessed using the Community Screening Instrument for Dementia, Alzheimer's Questionnaire (AQ), the African Neuropsychology Battery, and the Neuropsychiatric Symptoms Inventory (NPI). Results: Average caregiver burden on the ZBI was 36.1 (SD = 14.6; range = 12–58). Greater impairments in patient cognition (orientation, visuospatial, memory, executive functioning), fragility, and neuropsychiatric symptoms (delirium, agitation, depression) were predictive of caregiver burden. After controlling for AQ scores and caregiver gender, greater symptoms of depression, and worse performances on verbal memory and problem solving were associated with greater caregiver burden. Conclusion: Worsening patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. These findings are consistent with the prior literature. Future studies may wish to explore supportive factors and caregiver specific characteristics that buffer against perceived burden. Key points: It is critical to predict caregiver burden in individuals with suspected dementia due to the debilitating nature of these disorders and need for caregiver support.While some examination of the factors affecting caregiver burden has been undertaken in Sub‐Saharan Africa, these findings have had little impact on clinical care or research in Democratic Republic of Congo (DRC) where dementia is considered as "witchcraft."This study has shown that the worsening of patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. [ABSTRACT FROM AUTHOR]

Background and purpose: Patients with acute epileptic seizures form a large patient group in emergency neurology. This study aims to determine the burden caused by suspected epileptic seizures at different steps in emergency care. Methods: A retrospective, cross‐sectional, population‐based (>1,000,000 inhabitants), 4‐year (2015–2018) study was conducted in an urban setting with a single dispatch centre, a university hospital‐affiliated emergency medical service (EMS), and five emergency departments (EDs). The study covered all adult (≥16 years old) emergency neurology patients receiving medical attention due to suspected epileptic seizures from the EMS and EDs and during hospital admissions in the Helsinki metropolitan area. Results: Epileptic seizures were suspected in 14,364 EMS calls, corresponding to 3.3% of all EMS calls during the study period. 9,112 (63.4%) cases were transported to hospital due to suspected epileptic seizures, and 3368 (23.4%) were discharged on the scene. 6969 individual patients had 11,493 seizure‐related ED visits, accounting for 3.1% of neurology‐ and internal medicine‐related ED visits and 4607 hospital admissions were needed with 3 days' median length of stay (IQR=4, Range 1‐138). Male predominance was noticeable at all stages (EMS 64.7%, EDs 60.1%, hospital admissions 56.2%). The overall incidence was 333/100,000 inhabitants/year for seizure‐related EMS calls, 266/100,000 inhabitants/year for ED visits and 107/100,000 inhabitants/year for hospital admissions. Total estimated costs were 6.8 million €/year, corresponding to 0.5% of all specialized healthcare costs in the study area. Conclusions: Patients with suspected epileptic seizures cause a significant burden on the health care system. Present‐day epidemiological data are paramount when planning resource allocation in emergency services. [ABSTRACT FROM AUTHOR]

Aim: The study aimed to translate and adapt the traditional Chinese Food Allergy Quality of Life‐Parental Burden Questionnaire (TC‐FAQL‐PB) into simplified Chinese language and determine the validity and reliability of the translated version. Design: A methodologic study design involving instrument translation and psychometric evaluation was used for the present study. Methods: The simplified Chinese FAQL‐PB (SC‐FAQL‐PB) was developed following Guillemin's guidelines for cross‐cultural adaptation. A convenience sample of 230 participants was recruited. The psychometric properties were examined using internal consistency, test–retest reliability, item discrimination, content validity and construct validity. Results: The values of I‐CVI ranged from 0.83 to 1.00. The CFA model revealed that the study supported the two‐factor model. The questionnaire had good internal consistency with a Cronbach's alpha coefficient of 0.946. The item‐total correlation values ranged from 0.707 to 0.866. Test–retest reliability showed that the intraclass correlation coefficient was 0.926 (95% CI, 0.830–0.968). [ABSTRACT FROM AUTHOR]

Aim: To examine specific correlates that may affect retention outcomes of neural stem cell therapy trials in families screened for cerebral palsy. Design: A prospective correlational study. Methods: Primary caregivers completed surveys of psychological resilience, care burden and family caregiver tasks. The overall data and differences between groups were analysed and compared. Results: Resilience was negatively correlated with the care ability and closely related to the monthly household income and educational level of the caregivers. Factors affecting the final retention rate included the type of disease, number of combined disorders, monthly household income, primary caregivers' education level and resilience. Conclusion: Economic level, literacy and psychological status may affect trial retention. These findings can provide tips for preparing for subsequent screening, identification and intervention in stem cell clinical trials. Implication for the Profession and/or Patient Care: The study results may provide nursing care tips to make recruitment more efficient, reduce trial costs, support patient‐centredness and accelerate trial progress. No Patient or Public Contribution: The target population involves the primary caregivers of children living with cerebral palsy. However, neither patients nor the public contributed to the design or conduct of the study, analysis, or interpretation of the data, or preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Family carers play a crucial role in dementia care. As the condition progresses, people with dementia become increasingly dependent on their carers for all areas of daily living. The risk of carer burnout is significant. One of the more stressful events for family carers is when hospital admission is required for the person they care for. Living in regional Australia adds complexity to the experience. Hospital and health services in regional Australia could use a greater understanding of the issues associated with hospital care to inform patient and carer management, improve outcomes for this population and support the goal of 'ageing in place'. Objective: To explore the experience of carers of people with dementia in regional Australia when hospital care or treatment was required for the person they provide care for. Design: Six family carers living in regional Australia participated in this interpretative phenological study. Individual, semistructured interviews were held and transcribed verbatim shortly after. Data analysis occurred via three key processes: reading and highlighting, coding and grouping, which yielded the major themes and subthemes of the study. Findings: Three major themes and nine subthemes emerged from data analysis. The major themes were: (i) support and supply of specialist care; (ii) travel needs and negotiations; and (iii) empathy and experience make a difference. Discussion: Findings from this study highlight aspects of care that healthcare providers can address to improve outcomes for patients with dementia and their carers. Carers need opportunities to seek clarification and provide input on care plans. Good communication, involvement and relationship building between healthcare staff and carers are vital to achieving optimal patient outcomes. Staff training supporting understanding of appropriate dementia care is essential for improved patient and carer outcomes. Conclusion: Factors related to regional location, including lack of specialist care and support, compound carers' challenges. Healthcare provider education on dementia care and dementia‐friendly processes in hospitals will support optimal patient and carers outcomes. [ABSTRACT FROM AUTHOR]

Background: Within the context of the increasing prevalence of prolonged critical illness, a situation intensified by the COVID‐19 global pandemic, advancing understanding of the experiences of families of survivors that are discharged home is important in understanding the complexity of life for these people. Aims: To examine research related to the experiences of families of survivors of prolonged critical illness that are discharged home. Study design: This review was conducted using the Whittemore and Knafl framework for integrated literature reviews. A literature search was conducted using the electronic databases of Web of Science, CINHAL, Scopus, and PubMed for English language studies published between January 2002 and October 2021. Article titles and abstracts were screened in view of finding a selection of articles that focussed on the experiences of families of people who have survived a prolonged intensive care stay that are discharged home. Study quality was assessed using the CASP (Critical Appraisal Skills Programme) tool. Data analysis of nine peer‐reviewed articles was informed by the Braun and Clarke approach to thematic analysis. The PRISMA guidelines were used to report the review process. Results: Nine articles were included in the review. Three major themes were identified, namely, (i) the negative impact on family caregiver health and well‐being, (ii) caregiver burden, and (iii) unmet support needs. Conclusions: Families of prolonged critical illness survivors that are discharged home face complex challenges that make their experience difficult and demanding. Family support needs once patients are discharged home are largely unrecognized in this population. Relevance to clinical practice: This review evidences the need to investigate further the experiences of families of survivors of prolonged critical illness. Further qualitative research has the potential to help inform service provision and support for these people. [ABSTRACT FROM AUTHOR]

Introduction: Increasing numbers of individuals admitted to hospitals for trauma are older adults, many of whom also have underlying serious illnesses. Older adults with serious illness benefit from palliative care, but the palliative care needs of seriously ill older adults with trauma have not been elucidated. We hypothesize that older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours before trauma admission. Methods: Using Health and Retirement Study data (2008–2018) linked to Medicare claims, we identified patients 66 years or older who met an established definition of serious illness in surgery and were admitted with trauma. Descriptive analyses were performed for baseline patient characteristics, pre‐admission pain (dichotomized as none/mild vs. moderate/severe), depression (dichotomized as no, Center for Epidemiologic Studies Depression scale [CES‐D] < 3 vs. yes, CES‐D ≥ 3), and unpaid caregiving hours (dichotomized as low (<30 h/month), high (≥30 h/month)). Results: We identified 1741 patients, 67.4% were female and 86.8% White. Mean age was 83 (SD 7.5), and 60.3% had ≥4 comorbidities. The majority (62.9%) were admitted due to falls, 33.5% had isolated hip fracture. The prevalence of baseline moderate/severe pain and depression were 38.1% and 42.6%, respectively. Among the cohort, 42.2% had unpaid caregiving, of those 27.7% had ≥30 h/week of unpaid caregiving hours. Conclusions: Prior to trauma admission, older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours. These findings may inform targeted palliative care interventions to reduce symptom burden and post‐discharge healthcare utilization. [ABSTRACT FROM AUTHOR]

Introduction: Von Willebrand disease (VWD) is the most widespread congenital bleeding disorder. Caregivers are highly involved in its treatment, and from the time of the child's bleeding diagnosis, they face new demands such as recognition of bleeds and treatment options. Aim: The aim of this study was to assess Health related quality of life (HRQoL) in caregivers of children with moderate and severe VWD in Sweden, and to describe the impact of psychosocial aspects on the burden. Methods: A multicentre, cross‐sectional study. The Short Form 36 Health Survey (SF‐36) was used to assess HRQoL. Caregiver burden was measured using The HEMOphilia associated Caregiver Burden scale (HEMOCAB). Children´s clinical data were collected from the Swedish national registry for bleeding disorders. Results: Seventy caregivers of children with moderate or severe VWD were included. Caregivers of children with moderate VWD scored significantly lower in the mental health domains on SF‐36, compared to matched normative data. Psychosocial aspects that significantly impacted the caregiver burden negatively measured by HEMOCAB total score were: if the caregiver reported that VWD affected their life in general (p =.001), if the child was absent from preschool/school ≥2 day/12 months due to VWD (p =.002) or that VWD had a financial impact on the family (p =.001). Conclusion: This study contributes to knowledge about caregivers' HRQoL and highlights the situation of caregivers of children with moderate VWD. Furthermore, the caregiver burden was negatively affected by psychosocial aspects. Clinical follow‐ups should include assessment of psychosocial aspects to identify caregivers that are at risk of high burden. [ABSTRACT FROM AUTHOR]

Background: Few studies have examined whether family caregivers' own primary care providers can affect caregiving‐specific well‐being, such as caregiver stress. In this pilot study, we explored whether primary care experiences when family caregivers report as patients were associated with the stress of caregiving. Methods: We used cross‐sectional data from a survey conducted in Japan between November and December 2020. We recruited family caregivers aged 40–74 years who were caring for community‐dwelling adults with chronic conditions. We assessed primary care experience using the Japanese version of the Primary Care Assessment Tool Short Form (JPCAT‐SF) and caregiver stress using the Japanese short version of the Zarit Caregiver Burden Interview. Results: In total, 406 family caregivers were included in the analysis. The mean JPCAT‐SF total score was 42.1 out of 100 points. The proportion of caregivers who had higher caregiver stress was 48.8%. After adjusting for possible confounders, the JPCAT‐SF score was found to be significantly associated with caregiver stress (lower stress = 0 vs. higher stress = 1; adjusted prevalence ratio per 1 SD increase in JPCAT‐SF score = 0.89; 95% CI 0.80–0.98). Among the subscales of the JPCAT‐SF, longitudinality, and comprehensiveness (services available) were associated with caregiver stress. Conclusions: Better primary care experiences when family caregivers reported as patients were associated with lower caregiver stress. Longitudinality, which includes focusing attention on the individual as a whole person, and comprehensiveness in the context of building provider‐patient relationships that make consultation easier when needed, were associated with lower stress. [ABSTRACT FROM AUTHOR]

Objective: To conduct an exploratory examination of caregiver burden involving toilet problems in patients with mild cognitive impairment (MCI) and Alzheimer's disease (AD) and related characteristics. Methods: We included 50 outpatients with amnestic MCI and AD and their caregivers. Patients were subclassified into three groups: MCI, mild AD, and moderate/severe AD. We used the Japanese version of the Zarit Burden Interview (J‐ZBI) to evaluate caregiver burden and conducted a questionnaire on the frequency of lower urinary tract symptoms and related caregiver burden. We compared the frequency of questionnaire items with the level of burden in each group and subsequently determined the J‐ZBI correlation coefficient. Results: Among the questionnaire items, the caregiver's burden of "increased daytime urinary frequency," "nocturia," "urinary incontinence," and "they cannot clean the toilet" statistically significantly correlated with J‐ZBI scores (ρ = 0.52, 0.65, 0.79, and 0.83, respectively). Items including "they cannot clean the toilet," "the smell of excrement is bothersome," "assistance for transfer is necessary," "they soil the clothes and bed," and "they cannot clean the genital region" were significantly more common in the patient group with moderate/severe AD. Conclusions: Lower urinary tract symptoms and toilet problems were significantly correlated with caregiver burden. Toilet problems differ depending on the severity of dementia. Therefore, a support system based on dementia severity is required to address toilet problems. [ABSTRACT FROM AUTHOR]

Aims: Determine efficacy of "KARER" educational intervention on caring ability and burden of caregiving relatives of disabled patients with stroke and cardiovascular diseases. Design: Clinical, randomized, controlled and double blinded trial with a mixed approach. Methods: Study population will be made up of 96 caregiving relatives of patients of home‐hospitalized care programs in the cities of Bogotá and Bucaramanga, (Colombia), between March 2021 and March 2022. Participants will be randomly assigned into two groups, either intervention (n = 48) or control (n = 48). The intervention is interdisciplinary and multi‐component: B‐Learning modality and clinical simulation. Follow‐up of participants will last 8 weeks from intervention period start‐out, and measurements will be taken and analysed in masked form. The main results will be the mean score changes of care ability and caregiver burden. Discussion: Caregiving relatives will show better adaptation to their role through effective use of caring abilities as they look after disabled persons with chronic diseases. [ABSTRACT FROM AUTHOR]

Background: In this study, we investigate how socio‐demographic characteristics (age, gender and education) and informal care relationship characteristics (e.g., time spent on care, number of informal caregivers, professional care) are linked with informal care burden during the COVID‐19 pandemic. In addition, we expect this burden to differ by personality characteristics, degree of resilience, and—in this specific context—perceived the COVID‐19 threat. Method: We used the fifth wave of a longitudinal study to identify 258 informal caregivers. These online survey data came from a five‐wave longitudinal study in Flanders, Belgium that ran from April 2020 to April 2021. Data were representative of the adult population by age and gender. Analyses include t‐tests, ANOVA, SEM and binomial logistic regression. Results: We found that the informal care burden was strongly linked with a socio‐economic gradient, time investment changes in care since the start of the pandemic, and whether there was more than one informal caregiver. Personality traits such as agreeableness and openness to experience, and the perceived threat of COVID‐19 were also related to care burden. Conclusions: During the pandemic, informal caregivers were put under extra considerable pressure: restrictive government measures sometimes led to the temporary suspension of some or all professional care for persons with care needs, which may have resulted in a growing psychosocial burden. We recommend that, in the future, the focus should be on supporting the mental wellbeing and social participation of caregivers along with measures to protect caregivers and their relatives from COVID‐19. Support structures for informal caregivers should be kept running during crises now and in the future, but it is also important to adopt a case‐by‐case basis to consider support for informal caregivers. [ABSTRACT FROM AUTHOR]

Background: A growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community‐dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges. Methods: Semi‐structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes. Results: Three themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well‐being: self‐care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end‐of‐life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression. Conclusions: FCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end‐of‐life issues. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers of older adults experience a high degree of psychosocial burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving supportive services that provide assistance for stressful tasks are instrumental in alleviating caregiving burden and strain. Research is limited on what types of supportive services caregivers are utilizing by relationship status and their source of information regarding these services. We sought to characterize caregiving supportive services use by caregiver relationship status. Methods: We analyzed cross‐sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults ≥65 years of age. Caregiver relationship status (i.e., spouse, child, other relative/non‐relative) was the independent variable. Type of supportive service and source of information about supportive services were the dependent variables. Bivariate analyses were performed to examine the association with caregiver relationship status and associations between use of caregiving supportive services and caregiver and care recipient characteristics. Among service users, we measured associations between caregiver relationship status, type of supportive services used, and source of information about supportive services. Results: Our sample consisted of 1871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses and other relatives/non‐relatives (46.5% vs. 27.6% vs. 25.9%, p = <0.01, respectively). Among users of services, there were no differences in type of services used. Spouses primarily received their information about services from a medical provider or social worker (73.8%, p = <0.001). Conclusion: Our findings highlight the need to ensure that other caregiving groups, such as spouses and other relatives/non‐relatives, have access to important supportive services such as financial support. Medical providers and/or social workers should be leveraged and equipped to provide this information and refer to services accordingly. [ABSTRACT FROM AUTHOR]

Objective: To synthesize and examine current literature on survivorship experiences and psychosocial oncologic care programs of individuals affected by cancer in sub‐Saharan Africa (SSA). Methods: This was a systematic review guided by the PRISMA 2020 guidelines. We searched 6 databases for articles published from inception to 21 October 2021. Articles were appraised using the Johanna Briggs Institute's Checklist for Qualitative Research. For data synthesis, we used the World Health Organization (WHO) quality of life framework [WHOQOL] to organize experiences into 6 domains/themes. Results: Twenty‐five qualitative studies were included in the synthesis. Studies focused on psychosocial care of adults (>18 years) affected by cancer in SSA. The common WHOQOL domains were social relations, spirituality/religion/personal beliefs, and psychological. Conclusion: Findings echo need for individuals with cancer and their caregivers. Healthcare professionals are an essential resource for information and support services that can be tailored to individuals need. This synthesis highlighted caregiver stress and stressors from the community that could impact care of individuals with cancer. A holistic approach is needed that incorporates professional and social aspects of care. [ABSTRACT FROM AUTHOR]

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age‐related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer‐related emergency presentations, lower quality processes of cancer‐related decision making, accessibility‐related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer‐related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person‐centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families. [ABSTRACT FROM AUTHOR]

Introduction: We evaluated determinants associated with care partner outcomes along the Alzheimer's disease (AD) stages. Methods: We included n = 270 care partners of amyloid‐positive patients in the pre‐dementia and dementia stages of AD. Using linear regression analysis, we examined determinants of four care partner outcomes: informal care time, caregiver distress, depression, and quality of life (QoL). Results: More behavioral symptoms and functional impairment in patients were associated with more informal care time and depressive symptoms in care partners. More behavioral symptoms were related with more caregiver distress. Spouse care partners spent more time on informal care and QoL was lower in female care partners. Behavioral problems and subtle functional impairment of the patient predisposed for worse care partner outcomes already in the pre‐dementia stages. Discussion: Both patient and care partner determinants contribute to the care partner outcomes, already in early disease stages. This study provides red flags for high care partner burden. [ABSTRACT FROM AUTHOR]

Aims: To describe the home care experience, challenges and coping strategies of caregivers with children on automatic peritoneal dialysis (PD) in mainland China during the early stage of the COVID‐19 outbreak. Design: A qualitative descriptive approach was adopted. Semi‐structured telephone interviews were conducted among 14 families with children on automatic peritoneal dialysis from February 2nd to 10th, 2020. The care routine, stress and coping strategies of caregivers of children on peritoneal dialysis were collected. The data were analysed using thematic analysis. Methods: Four key themes were defined: (1) concerns about PD treatment intertwined with worries about COVID‐19; (2) retaining a sense of normality in the middle of the challenges; (3) staying safe; and (4) staying positive and carrying on. Results: Families with children on automatic PD addressed the stress from COVID‐19 and its containment measures by closely adhering to COVID‐19 preventative measures, actively adjusting mentality and maintaining a sense of normality during the outbreak. This implies that healthcare staff need to be more aware of the complex medical needs of families with children on automatic PD, advocate for them and facilitate their navigation through the repurposed healthcare system. [ABSTRACT FROM AUTHOR]

Background: Skilled nursing facility (SNF) patients and their caregivers who transition to home experience complications and frequently return to acute care. We tested the efficacy of the Connect‐Home transitional care intervention on patient and caregiver preparedness for care at home, and other patient and caregiver‐reported outcomes. Methods: We used a stepped wedge, cluster‐randomized trial design to test the intervention against standard discharge planning (control). The setting was six SNFs and six home health offices in one agency. Participants were 327 dyads of patients discharged from SNF to home and their caregivers; 11.1% of dyads in the control condition and 81.2% in the intervention condition were enrolled after onset of COVID‐19. Patients were 63.9% female and mean age was 76.5 years. Caregivers were 73.7% female and mean age was 59.5 years. The Connect‐Home intervention includes tools, training, and technical assistance to deliver transitional care in SNFs and patients' homes. Primary outcomes measured at 7 days included patient and caregiver measures of preparedness for care at home, the Care Transitions Measure‐15 (patient) and the Preparedness for Caregiving Scale (caregiver). Secondary outcomes measured at 30 and 60 days included the McGill Quality of Life Questionnaire, Life Space Assessment, Zarit Caregiver Burden Scale, Distress Thermometer, and self‐reported number of patient days in the ED or hospital in 30 and 60 days following SNF discharge. Results: The intervention was not associated with improvement in patient or caregiver outcomes in the planned analyses. Post‐hoc analyses that distinguished between pre‐ and post‐pandemic effects suggest the intervention may be associated with increased patient preparedness for discharge and decreased number of acute care days. Conclusions: Connect‐Home transitional care did not improve outcomes in the planned statistical analysis. Post‐hoc findings accounting for COVID‐19 impact suggest SNF transitional care has potential to increase patient preparedness and decrease return to acute care. [ABSTRACT FROM AUTHOR]

Background: Most older adults with Alzheimer's disease and related dementias (ADRD) do not receive a timely formal diagnosis, although formal diagnosis is linked to improved outcomes. Little is known about how a recognized formal diagnosis impacts family caregivers, who provide crucial support for older adults experiencing ADRD. Methods: We analyzed 2017 National Health and Aging Trends Study and linked National Study of Caregiving data for a nationally representative sample of 724 (weighted n = 5,431,551) caregivers who assisted an older adult with probable dementia. Probable dementia was determined via previously validated composite measure. We modeled caregiver experiences as a function of recognized formal ADRD diagnosis using weighted, logistic regression and adjusting for the relevant older adult and caregiver characteristics. Results: Among caregivers who assisted an older adult with probable dementia, those assisting an individual with recognized formal ADRD diagnosis were significantly more likely to report emotional difficulty (aOR: 1.77; p = 0.03) and family disagreement over the older adult's care (aOR: 5.53; p = 0.03). They were also more likely to assist with communication during doctors' visits (aOR: 9.71; p < 0.001) and to receive caregiving‐related training (aOR: 2.59; p = 0.01). Conclusions: While a timely ADRD diagnosis may help ensure access to needed supports for older adult and caregiver alike, diagnosis must be linked to support as they navigate resultant complex emotions. Formal diagnosis is linked to caregiver integration with, and support from, the older adult's team of health care providers; therefore, reducing existing disparities in timely diagnosis is necessary to ensure all caregivers have equal access to support. [ABSTRACT FROM AUTHOR]

Background: Trauma continues to place a burden on individuals, communities and health care systems around the world. To help reduce this burden and improve care, trauma registries in Australia and Aotearoa New Zealand collect standardized data on patients admitted with Injury Severity Scores greater than 12. There is currently no agreed minimum data set for trauma patients with Injury Severity Score less than 13, representing an opportunity to provide more data for quality improvement and injury prevention. Methods: A binational, expert, advisory group assessed the value of potential fields for a minimum dataset for low severity trauma. Existing trauma registries in Australia and Aotearoa New Zealand were assessed to ensure compatibility. Results: Thirty‐five data fields met criteria for inclusion in the low‐severity minimum dataset. The fields comprised a subset of the Australia New Zealand Major Trauma Registry and were included in existing low‐severity registries. Conclusion: A minimum data set for low severity has been defined for use in Australia and Aotearoa New Zealand. In addition to high severity trauma data this will provide a standard for data collection that will contribute to quality improvement and injury prevention. [ABSTRACT FROM AUTHOR]

Aim: The objective of the parent study was to examine attitudes and experiences regarding counselling about preconception care among Black and/or Latina women in the United States with type 2 diabetes (T2DM). Here, we present emergent findings from a secondary analysis of caregiving. Methods: In this qualitative descriptive study, we used conventional content analysis to identify themes from semi‐structured interviews with 32 Black and/or Latina women ages 18–40 who have T2DM in the United States recruited from online platforms and snowball sampling. Results: Caregiving responsibilities both motivate and disrupt diabetes self‐management behaviours. Caregiving largely meant taking care of children, but women also had responsibilities to adult family members and romantic partners. Women were motivated to manage their diabetes in order to prevent negative health effects on their children and to stay healthy so they could fulfil caregiving responsibilities. However, caregiving competed for time, energy and money with self‐management. Struggling to balance caregiving and self‐management caused stress that women felt was intrinsically unhealthy and undermined self‐management. Conclusions: Young adult women with T2DM identified different ways that the roles and responsibilities in the family could affect their diabetes self‐management. Providers and policymakers should develop health‐promoting interventions that accommodate caregiving responsibilities. [ABSTRACT FROM AUTHOR]

Background: End‐stage kidney disease (ESKD) patients require specific and continuous care, which affects caregivers' quality of life (QOL). It is necessary to define the basic problems and restrictions upon family caregivers of renal patients affecting their physical and psychological status. Objectives: The main objectives of this narrative review were to examine the literature over the past 10 years, to describe factors associated with QOL of caregivers of patients with ESKD, and to identify the level of subjective burden reported by caregivers. Methods: A literature search was carried out using the following electronic databases: PubMed, Medscape, Science Direct, Scopus, PsychINFO and other scientific sources. Keywords included 'quality of life', 'caregivers', 'end stage kidney or renal disease patients', 'burden' and a combination of these terms. Only studies from January 2010 to December 2020 were included in this study. Results: The results found that there was significant burden and distress experienced by caregivers that affected their QOL. Patients' QOL is associated with caregivers' QOL. The hours of caring per day and the long‐term replacement therapy are associated with great burden. Conclusions: More awareness to caregivers' QOL is required to meet their needs, reduce anxiety and to improve patients' QOL. Caregiver support could empower and prepare them for initiation of replacement therapy. This can potentially enhance their diseased family members' QOL and could also restrict the use of health care system resources. Given how difficult it is to conceptualize QOL, a holistic approach to patients and caregivers require QOL assessment in each stage of the kidney disease. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this systematic literature review was to describe patient‐reported outcomes, mental health and caregiver burden in patients with neovascular age‐related macular degeneration (nAMD) treated with anti‐vascular endothelial growth factor (VEGF) agents in routine clinical practice. Methods: Electronic searches were conducted in Embase and MEDLINE according to pre‐defined criteria. Results: Of 856 records identified, 63 met inclusion criteria. Depression or depressive symptoms were reported in up to 42% of patients with nAMD. Of 25/63 (40%) studies evaluating quality of life (QoL) and using various tools, eight studies reported composite National Eye Institute Visual Functioning Questionnaire scores following anti‐VEGF treatment. Of these, seven reported a statistically significant improvement at the earliest time point measured (Month 3–12) and approximately 50% reported sustained QoL benefits at 12 months. In studies comparing the attributed or different regimens, the most important factor from the patient's perspective was the likelihood that a particular regimen would maintain vision. There was a preference towards treat and extend, which was associated with a perceived reduction in patient and caregiver burden, compared to fixed dosing. Conclusions: A coordinated holistic approach to patient care is key to optimizing patient well‐being as well as visual outcomes. Further research regarding the patient‐reported impact of nAMD management outside the trial setting (particularly international longitudinal studies) is warranted. Standardization of QoL studies would assist in establishing whether sustained QoL improvement, rather than prevention of QoL decline, should be a realistic expectation of treatment of nAMD in the longer term. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer is proportionately higher in Africa and these result in increased demands on caregivers. The inability of affected children to take care of themselves; coupled with prescribed medical interventions presents physical and social burdens on family caregivers. Aims and methods: This study used a qualitative exploratory design to explore the physical and socioeconomic challenges for family caregivers of children diagnosed with cancer and receiving care at one of the biggest tertiary hospitals in Ghana. A total of thirteen family caregivers of children with cancer were interviewed. Findings: Two major themes were identified: Burden of care on Physical Health and Socioeconomic burdens of caregiving on the family caregiver. It was reported that family caregivers encounter physical challenges such as Aches and Pains when performing caregiving activities, Loss of Appetite, Fatigue, Compromised Functional State and Sleep Disruption. The second theme, Socioeconomic burdens of caregiving on family caregivers account for the consequences of caregiving on social lives, family relationships, finance and employment. Conclusions and recommendations: The study recommends that measures that provided relief for the caregivers such as teaching them to adopt local measures of pain relief such as massage should be encouraged. Policies should adopt measures that encourage caregivers to have some days of rest whiles providing care to their children with cancer. Also, health insurance packages that provide relief for the cost of accessing healthcare, should be extended to children with cancers to support their caregivers. [ABSTRACT FROM AUTHOR]

Objective: Cancer caregiving can result in increased psychosocial distress and poor health‐related quality of life (QOL). Psychoeducation has been shown to be effective in enhancing caregiving‐oriented outcomes. A systematic assessment of the overall effect of psychoeducational intervention (PEI) and identification of individual intervention characteristics that may contribute to the effectiveness of PEI is needed. Methods: For this meta‐analysis, relevant articles were identified through electronic databases using key search terms and their medical subject heading such as "family caregiver," "cancer," and "psychoeducational intervention." Results: Twenty‐eight controlled trials with 3876 participants were included. PEIs had beneficial effect on depression (Standardized Mean Difference [SMD] −0.26; 95% CI = −0.50 to −0.01, p < 0.04), anxiety (SMD −0.41; 95% CI = −0.82 to 0.01, p < 0.05), caregiver burden (SMD −0.84; 95% CI = −1.22 to −0.46, p < 0.0001) and QOL (SMD 0.59, 95% CI 0.24–0.93; p < 0.0009) at the immediate post‐intervention period. At longer‐term follow‐up, the effectiveness of PEI was maintained on QOL (SMD 0.39, 95% CI = −0.00 to −0.77, p < 0.05), and anxiety (SMD −0.57; 95% CI = −1.09 to −0.06, p < 0.03). Moderation analysis showed that intervention characteristics such as studies conducted in high‐income countries, group intervention and studies that focused on specific and mixed cancers explain some of the high variations observed among the included studies. Conclusions: PEI may benefit caregivers of cancer patients through the significant effects on caregiver burden, QOL, anxiety, and depression. The findings from the moderation analysis may be important for the design of future interventions. [ABSTRACT FROM AUTHOR]

Background: Parenting interventions in humanitarian settings have prioritized the acquisition of parenting knowledge and skills, while overlooking the adverse effects of stress and distress on parenting—a key mediator of refugee children's mental health. We evaluated the effectiveness of the Caregiver Support Intervention (CSI), which emphasizes caregiver wellbeing together with training in positive parenting. Methods: We conducted a two‐arm randomized controlled trial of the CSI with Syrian refugees in Lebanon, with an intent‐to‐treat design, from September 2019–December 2020. A total of 480 caregivers from 240 families were randomized to the CSI or a waitlist control group (1:1). Retention from baseline to endline was 93%. Data on parenting and caregiver psychological wellbeing were collected at baseline, endline, and three‐month follow‐up. Prospective trial registration: ISRCTN22321773. Results: We did not find a significant change on overall parenting skills at endline (primary outcome endpoint) (d =.11, p =.126) or at follow‐up (Cohen's d =.15, p =.054). We did find a significant effect on overall parenting skills among participants receiving the full intervention—the sub‐sample not interrupted by (COVID‐19) (d = 0.25, p <.05). The CSI showed beneficial effects in the full sample at endline and follow‐up on harsh parenting (d = −.17, p <.05; d =.19, p <.05), parenting knowledge (d =.63, p <.001; d =.50, p <.001), and caregiver distress (d = −.33, p <.001; d =.23, p <.01). We found no effects on parental warmth and responsiveness, psychosocial wellbeing, stress, or stress management. Changes in caregiver wellbeing partially mediated the impact of the CSI on harsh parenting, accounting for 37% of the reduction in harsh parenting. Conclusions: The CSI reduced harsh parenting and caregiver distress, and demonstrated the value of addressing caregiver wellbeing as a pathway to strengthening parenting in adversity. These effects were achieved despite a pandemic‐related lockdown that impacted implementation, a severe economic crisis, and widespread social unrest. Replication under less extreme conditions may more accurately demonstrate the intervention's full potential. [ABSTRACT FROM AUTHOR]

Background: Examining the relationship between the behavioural and psychological symptoms of dementia (BPSD) and residence status is crucial to improving BPSD and reducing the burden on caregivers. However, studies on how BPSD differ between individuals living at home and those in institutional settings are lacking. We conducted a questionnaire survey among healthcare providers (HCPs) involved in dementia care and nursing to clarify the characteristics of BPSD by residence status in patients with Alzheimer's disease (AD) living at home or in facilities. Methods: We sent questionnaires to HCPs and asked them to answer questions on up to five cases that needed treatment for BPSD and who received long‐term care insurance services from 1 April 2016 to 31 March 2017. Responses were received for 371 cases, of which 130 diagnosed with AD were analyzed. The patients were divided into two groups: patients with AD living at home (home care group) and patients with AD living in facilities (facility care group). A Chi‐square test was used to identify differences between the two groups. A binomial logistic regression analysis was also conducted to clarify the association between residence status and BPSD. Results: Of the 130 patients, 72 lived at home (home care group) and 58 resided in facilities (facility care group). None of the background factors was significantly different between the two groups. The Chi‐square test indicated that sleep disturbance was significantly more common in the facility care group (60.3% in the facility care group vs. 33.3% in the home care group, P = 0.003), while the logistic regression analysis indicated that sleep disturbance was significantly associated with residence status (odds ratio: 2.529, P = 0.038). Conclusions: Sleep disturbances were more frequently observed among patients with AD living in institutions than among those living in their homes. [ABSTRACT FROM AUTHOR]

Background: The prevalence of homebound older adults in the United States more than doubled during the COVID‐19 pandemic with greater burden on family caregivers. Higher caregiver burden, more specifically higher treatment burden, contributes to increased rates of nursing home placement. There exist a multitude of tools to measure caregiver well‐being and they vary substantially in their focus. Our primary aim was to perform a scoping literature review to identify tools used to assess the facets of caregiver well‐being experienced by caregivers of persons with multiple chronic conditions (MCC) with a special focus on those caregivers of homebound adult patients. Methods: The search was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta‐Analyses) extension for scoping reviews. After refining search terms, searches were performed of the peer‐reviewed and gray literature. Results: After removal of duplicate studies, a total of 5534 total articles were screened for relevance to our study. After all screening and review were completed, 377 total articles remained for full review which included 118 different quantitative tools and 20 different qualitative tools. We identified the 15 most commonly utilized tools in patients with MCC. The Zarit Burden Interview was the most commonly used tool across all of the studies. Of the 377 total studies, only eight of them focused on the homebound population and included 13 total tools. Conclusions: Building on prior categorization of well‐being tools, our work has identified several tools that can be used to measure caregiver well‐being with a specific focus on those caregivers providing support to older adults with MCC. Most importantly, we have identified tools that can be used to measure caregiver well‐being of family caregivers providing support to homebound older adults, an ever‐growing population who are high cost and high utilizers of health care services. [ABSTRACT FROM AUTHOR]