Two identical twin pairs discordant for longstanding anorexia nervosa and OSFED: lived experience accounts of eating disorder and recovery processes.

Research into the risk of anorexia nervosa (AN) has examined twin pairs to further the understanding of the contributions of genetics, trait inheritance, and environmental factors to eating disorder (ED) development. Investigations of twin experiences of EDs have been biologically-based and have not considered the qualitative, phenomenological aspects of twin experiences. A gap in the literature exists regarding understanding of discordant twins with EDs. This research was developed in response, with the aim to deepen understanding of AN in discordant twins and to create novel ideas for further research and testing. The case studies presented in this article provide lived experience insights of two identical discordant twin pairs: one twin pair discordant for longstanding AN and one twin pair discordant for 'atypical' AN (the twin with AN has recovered). The perspectives and experiences of each co-twin (one with AN and one without) explore a number of factors that may have contributed to twin discordance in these cases, and how each twin has responded to the impact of AN in their lives. Through use of first-person accounts in case study presentation, this article centres social justice values of lived experience leadership and involvement in research. This article aims to extend current knowledge and understanding of EDs in discordant twins, particularly regarding risk for ED development, ED duration, diagnosis and treatment, and recovery processes.

The caregiving role influences Suboptimal Health Status and psychological symptoms in unpaid carers.

Background: Suboptimal Health Status (SHS) is the physical state between health and disease. This study aimed to fill in the knowledge gap by investigating the prevalence of SHS and psychological symptoms among unpaid carers and to identify SHS-risk factors from the perspective of predictive, preventive and personalised medicine (PPPM). Methods: A cross-sectional study was conducted among 368 participants who were enrolled from Australia, including 203 unpaid carers as cases and 165 individuals from the general population as controls. SHS scores were measured using SHSQ-25 (Suboptimal Health Status Questionnaire-25), whilst psychological symptoms were measured by DASS-21 (Depression, Anxiety and Stress Scale-21). Chi-square was used to measure SHS and psychological symptom prevalence. Spearman correlation analysis was utilised to identify the relationship between SHSQ-25 and DASS-21 scores. Logistic regression analysis was used for multivariate analysis. Results: The prevalence of SHS in carers was 43.0% (98/203), significantly higher than the prevalence 12.7% (21/165) in the general population (p < 0.001). In addition, suboptimal health prevalence was higher in female carers (50.3%; 95/189) than females in the general population (12.4%; 18/145). Logistic regression showed that the caregiving role influenced SHS, with carers 6.4 times more likely to suffer from SHS than their non-caring counterparts (aOR = 6.400, 95% CI = 3.751-10.919). Conclusions: Unpaid carers in Australia have a significantly higher prevalence of SHS than that in the general population and experience poorer health. The SHSQ-25 is a powerful tool that can be utilised to screen at-risk individuals to predict their risk of chronic disease development, an essential pillar for shifting the paradigm change from reactive medicine to that of predictive, preventive and personalised medicine (PPPM). Supplementary Information: The online version contains supplementary material available at 10.1007/s13167-024-00370-8.

Advice for dementia carers: A critique of the literature.

Although hundreds of advice manuals for dementia carers have been published, most have serious limitations. They emphasize the various problems family members experience without noting the social and political context within which caring unfolds. As a result, they eschew structural reforms in favor of individual solutions, including self-care. The manuals also encourage carers to detach emotionally from people with dementia by viewing them in terms of their disease. In addition, the books hew so closely to the medical model of dementia that they ignore newer perspectives. Narratives by people with dementia provide a critical corrective. Those works argue that the disproportionate attention directed toward carers has eclipsed the perspective of people with dementia, that people remain individuals despite a dementia diagnosis, that issues of stigma and discrimination shape the experience of living with dementia, that more emphasis should be placed on promoting the autonomy of people with dementia, that they are entitled to reasonable accommodations, and that they should have more opportunities for growth. I have reviewed the policies detailed in the guide and have no competing interests.

Caring for yourself while you care for someone else: a qualitative study exploring the mental and cardiovascular health behaviours of female carers of stroke survivors.

PURPOSE: Female carers of stroke survivors may experience increased risk of developing chronic health issues, such as cardiovascular disease. This study aims to understand: (i) how female carers of stroke survivors manage their mental and cardiovascular health and (ii) the characteristics they would find helpful in an intervention to support their ability to manage their health and wellbeing. MATERIALS AND METHODS: A qualitative descriptive design was used with data collected via semi-structured interviews and analysed using inductive thematic analysis. RESULTS: Eighteen female carers of stroke survivors participated in the study. Three key themes were identified: (i) struggling to prioritise own health and wellbeing; (ii) new roles and responsibilities impact on self-care; and (iii) peer-support improves mental health and well-being. Carers described preferences for group interventions to include peer support and have flexible delivery to allow easy access to information. One-to-one sessions with different health professionals may also be useful at times through the caregiving journey. CONCLUSIONS: These findings suggest that current interventions do not address cardiovascular risk self-management for female carers and provide insight into characteristics of interventions that may increase acceptability and feasibility of interventions to support long-term cardiovascular and mental health-promoting behaviours.

Female carers of stroke survivors report poor mental health and well-being outcomes and may be at a higher risk of developing chronic health issues.Female carers report difficulty engaging in healthy lifestyle choices particularly those targeting diet and exercise and struggle to adapt to new caregiving roles and responsibilities impact on self-care.Female carers also believed that an intervention incorporating peer support, educational resources, and convenient access to health professionals in a flexible manner would support them in addressing their long-term health and well-being.

Content Validation and Pilot Testing of the Promoting Active Lifestyle Among Children With Disability Questionnaire in Filipino and English.

BACKGROUND: Primary carers, school teachers, and administrators are key influencers in promoting active lifestyle among children with disabilities (CWD). Guided by the Capability, Opportunity, Motivation, Behavior Model, the Promoting Active Lifestyle among CWD (PALS) Questionnaire aims to determine these influencers' perceptions, capabilities, opportunities, and motivations in active healthy lifestyle promotion. This study evaluated the content validity and feasibility of the PALS Questionnaire in Filipino and English. METHODS: Six experts rated the relevance of the items in the Filipino and English versions of the PALS Questionnaire. Item and scale content validity indices and agreement among raters (modified kappa k*) were computed. The questionnaires were revised and pilot tested among 11 participants comprising primary carers, and special education teachers and administrators using 3 methods of administration: online survey, phone interview, and pen-and-paper survey. RESULTS: Scale-level content validity index indicated excellent content validity (0.96-0.97). Item-level content validity index ranged between 0.67 and 1.00. Interrater agreement on the relevance of all items was excellent (k* = .82-1.00), except for the item on teaching assistants (k* = .56). Most participants found the items easy to understand. The average time needed to complete a questionnaire was 30 minutes. The online version of the questionnaire was identified as the most feasible mode of administration. CONCLUSION: The PALS Questionnaire is a useful instrument for understanding Filipino primary carers' and educators' perceptions on promoting CWD's active healthy lifestyle. Information from the PALS Questionnaire could inform initiatives toward better CWD health and quality of life.

Carers in post-stroke aphasia: a scoping review of interventions and outcomes beyond communication partner training.

PURPOSE: Carers of people with aphasia face unique challenges. Research has demonstrated that these carers have a higher burden of care and more negative stroke-related outcomes in comparison to carers of stroke survivors without aphasia. The aim of this scoping review was to map the range of interventions for carers other than communication partner training and to examine their outcomes. MATERIALS AND METHODS: We conducted a scoping review on this topic. RESULTS: Twenty studies were included. Most studies were case series with four randomised control trials. Both quantitative and qualitative approaches were used. Most studies occurred during the long-term phase of care. Two interventions had only carers as participants. Interventions were comprised of different combinations of intervention components including psychoeducation, skill-building, and support. There was high variability on who led the interventions, the format, and the dose/schedule. Twenty-eight different outcome measures for carers and dyads were used across various domains with overall positive outcomes post-intervention. CONCLUSIONS: This review uncovered a wide range of formats, dosages, and outcome measures in interventions for carers. Encouragingly, the majority of these interventions included psychoeducation, skill-building, and support components. While most studies were case series, there are promising interventions that have the potential to enhance carer wellbeing.

Carer targeted interventions play an important role in reducing carer burden and increasing psychological wellbeing for carers of people with aphasia post-stroke.A tailored intervention for carers of people with aphasia should include components of psychoeducation, skill-building, and support to meet their needs across the continuum of care.Recognising carers as clients has the potential to improve healthcare outcomes for the carer and the person with aphasia.

Understanding the role of agency in the navigation of regional dementia care and support service pathways.

INTRODUCTION: Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways. METHODS: Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens' Theory of Structuration which considered the carers' intentionality, capacity and power to act in the navigation of their dementia care and support service pathways. FINDINGS: Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers' efforts. CONCLUSIONS: Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.

Carer Perspectives About the Acceptability and Usability of the TRANSITION Tool to Support Preparation for Older Adult Care Transitions: A Qualitative Study.

INTRODUCTION: Transitional care of older adults can be highly stressful for informal carers (carers) particularly when they are not involved in preparation and planning with health practitioners. This study aimed to ascertain carer perspectives about the potential acceptability and usability of a tool entitled the TRANSITION tool to support preparation and planning for the transition of an older adult from hospital to home. DESIGN: Exploratory qualitative. METHODS: Semi-structured interviews were undertaken between March 2020 and October 2021. A focus group was conducted in July 2022 to seek additional information and support data saturation. A total of 23 participants took part. Data were thematically analysed. FINDINGS: Participants explained their perspectives about the tool in four themes: (1) the TRANSITION tool has value, but health practitioners ask the questions; (2) the TRANSITION tool would be useful and acceptable, but not for all carers; (3) interacting with health practitioners is a barrier to using the tool and to communication; and (4) recognising us as part of the care team. CONCLUSIONS: While the tool was found to have potential value and utility, it would only be expected to support carers when they are valued and respected by health practitioners. Leadership is required in healthcare organisations to support genuine care for older adults and their carers, and to enable health practitioners to have time for transitional care communication. IMPLICATIONS FOR PRACTICE: The findings from the study suggest that the TRANSITION tool could support carers by prompting them about important areas of care to include in communication with health practitioners during discharge preparation.

Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

BACKGROUND: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. AIM: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. DESIGN: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. METHOD: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. RESULTS: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. CONCLUSION: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Carers' experiences and perspectives of the use of anticholinergic medications in people living with dementia: Analysis of an online discussion forum.

INTRODUCTION: There is concern about the use of anticholinergic medications in people living with dementia (PLWD). Such medicines may increase cognitive decline and may be associated with higher mortality in PLWD who take these medicines. The aim of this study was to analyse data from an online dementia discussion forum to explore the experiences and perspectives of PLWD and carers about the use of anticholinergic medicines in this population. METHODS: Following receipt of ethical approval, archived discussions (posts) from Dementia Talking Point, a fully public online forum for anyone affected by dementia, created and maintained by the Alzheimer's Society, were searched from the date of inception to January 2022 using a range of search terms including commonly used anticholinergic medicines. Posts, including any of the search terms, were assessed for relevance and analysed using inductive thematic analysis. RESULTS: Five hundred and fifty unique posts were analysed, all of which had been provided by carers, with no posts attributed to PLWD. The themes that encompassed carers' experiences were (1) motivators of prescribing, (2) perspectives on the process of prescribing and (3) the outcomes of prescribing. The dominant motivator of prescribing was the management of noncognitive symptoms, pre- and postdiagnosis of dementia. Carers' perspectives on the process of prescribing were informed by an assessment of the risk-benefit of starting a medication and shared decision-making between the carer and healthcare professional to a greater or lesser degree. The outcomes of prescribing were observing the effects of the medicines, which in turn influenced whether prescribing was reviewed and continued unchanged, continued but amended, reinitiated if the medicine had been previously stopped or discontinued (the process of deprescribing). CONCLUSION: This study has provided unique insights into carers' experiences and perspectives about the use of anticholinergic medications in PLWD, highlighting how commonly these medications are prescribed for PLWD and carers' concerns about their use. There is a clear need for carers and PLWD to receive information about these medicines and healthcare professionals to consider how to optimise the use of these medicines to avoid adverse effects. PATIENT OR PUBLIC CONTRIBUTION: This work was informed by findings from previous research studies focusing on optimising medicine use for people with dementia in primary care, in which interviews were conducted with PLWD, their carers and primary healthcare professionals. Although not strictly patient and public involvement, we utilised the feedback provided by key stakeholders to inform the research questions and aim/objectives of this study.

Accessing Meals on Wheels: A qualitative study exploring the experiences of service users and people who refer them to the service.

AIMS: This study aimed to explore the perceptions of Meals on Wheels (MoWs) service users (SUs), and people who refer them to MoWs ('referrers'), with accessing and commencing the service in England, the barriers that might hinder service uptake, and what information would be valued when considering accessing the service. METHODS: Semistructured interviews were conducted in May-July 2022 with seven SUs and 21 referrers, recruited from four MoWs providers across England. Data were analysed using inductive thematic analysis. RESULTS: Participants indicated various pathways into the service, but referrers (family members) were more likely to be the ones enquiring about, and commencing, MoWs for SUs. Once an enquiry about MoWs had been made, the service was perceived as straightforward to set up. However, existing preconceptions and stereotypes were perceived to act as barriers to accessing MoWs. Information that participants deemed important to have available when deciding on whether to access MoWs related to the meals, the specific services provided, the reliability and flexibility of delivery and the cost of services. CONCLUSION: These findings could inform MoWs service providers' public awareness strategies about MoWs, to facilitate referrals to the service for adults with care and support needs. PATIENT OR PUBLIC CONTRIBUTION: An advisory group of people with lived experience of MoWs (users of the service and their family referrers) extensively discussed the findings of the research and advised on the implications and future dissemination steps.

Participatory research with carers: A systematic review and narrative synthesis.

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

Assessing the effectiveness and feasibility of the Experienced Carers Helping Others program in relatives of adolescents with eating disorders using an online application format with individual sessions.

Eating disorders (ED) usually involve hospital admission and a high relapse rate, with the return home being a critical moment for patients and their families. After their return home, they often have trouble incorporating the guidelines they have learned into their daily context. ECHOMANTRA intervention program aims to facilitate this transition by offering psychological strategies that involve both patients and their families and carers. Specifically, the ECHO program is aimed at the relatives of these patients. The present study aimed to analyze the efficacy of adding the ECHO program to the usual treatment (TAU) of relatives through a novel format based on individual intervention and with an online format and to examine the acceptability and feasibility of this new format. The study design was multi-center, randomized, controlled, with a longitudinal design and comparing two parallel groups. A total of 108 family members participated. Results indicated that relatives from both groups, TAU and ECHO + TAU, showed improvements in expressed emotion, accommodation, impact of the ED, emotional well-being, and caregiver skills. However, effect sizes in the ECHO + TAU group were slightly larger than the TAU group. In addition, the changes were greater in depression and caregiver skills when the ECHO component was added. Most caregivers (81.48%) completed the ECHO and indicated a high level of satisfaction with the program. These results suggest the efficacy and the feasibility of adding the ECHO intervention program to the usual treatment in an individual online format.

The prevalence, characteristics, and psychological wellbeing of unpaid carers in the United Kingdom.

BACKGROUND: This study sought to describe the characteristics of unpaid carers in the UK and assess levels of depression, anxiety, and mental health treatment seeking behaviours in this population. METHODS: Data was derived from Wave 9 (n = 2790) of the COVID-19 Psychological Research Consortium (C19PRC) study, a longitudinal survey of adults in the UK. Logistic regression analyses were conducted to examine the characteristics of unpaid carers, association between caregiver status and psychological wellbeing, and caregiver-specific factors associated with risk of poor psychological wellbeing. RESULTS: Approximately 15% (n = 417) of the sample reported providing unpaid care. Younger age, having three or more children in the household, and lower income were identified as significant correlates of caregiver status. Unpaid caregivers were at increased risk of depression or anxiety and mental health help-seeking. Unpaid caregivers who were younger, lived in households with one or two children, and had a lower income were at greater risk of depression or anxiety and engaging in mental health help-seeking. Caring for an individual with a terminal illness, long-term illness, learning disability or difficulty, mental health problems, physical disability, and other were linked to increased risk of depression or anxiety, while caring for someone with a learning disability increased risk of mental health help-seeking. CONCLUSIONS: This study indicates that at least one in eight people in the UK provide unpaid care, and that those who provide unpaid care have a far higher risk of experiencing depression or anxiety and seeking mental health treatment. The identification of risk factors associated with these mental health outcomes will facilitate the identification of those in most need of support.

Designing an mHealth application for informal carers concerning the management of behavioural and psychological symptoms of dementia: a need analysis survey.

BACKGROUND: Informal carers face difficulties and challenges when dealing with the behavioural and psychological symptoms of dementia (BPSD) of their family members or friends residing at home. Mobile health (mHealth) applications are promising for educating and supporting carers. However, needs analysis studies have not been conducted in Sri Lanka to develop mHealth applications for informal carers of people with dementia. AIMS: To explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD. METHOD: An exploratory cross-sectional survey was conducted among a convenience sample (N = 203) of informal carers as a part of developing an mHealth application. Family members, relatives, or friends who lived with people with dementia and provided care on an unpaid basis for more than three months were included. The questionnaire included sociodemographic data, carer-rated prevalence and severity of BPSD, and informal carers' knowledge of dementia, carer burden, information-seeking sources, availability of smartphones, mHealth information seeking and perception of mHealth information seeking related to managing BPSD. Descriptive analysis and inferential tests were performed. RESULTS: Informal carers of people with dementia were predominantly female (70.4%), and 64% showed low knowledge of dementia. Of the participants, 35% reported a high carer burden, 53.7% reported a low burden, and only 11.3% reported no carer burden. Most of their care recipients (97%) had at least one BPSD. The prevalence and severity of BPSD were significantly and positively correlated with the carer burden. The participants' main source of information was health professionals. Most of them owned smartphones (63.5%), but none used mHealth applications for dementia-related information seeking. Approximately half of the respondents were ready to spend time (52.7%) and money (46.8%) on mHealth information seeking. Perceived mHealth usefulness was significantly associated with dementia knowledge, smartphone ownership, and readiness to spend time and money on mHealth information seeking. CONCLUSION: Informal carers of people with dementia were affected by BPSD in their care recipients. This study explored carers' educational needs concerning dementia, BPSD, and carer burden. Informal carers could adapt mHealth for dementia-related information seeking. Their unmet needs in managing BPSD should be explored.

Including significant others in psychological therapy with people with intellectual disabilities: A national survey of the practice of UK psychologists.

BACKGROUND: Talking therapy for people with intellectual disabilities is often specifically adapted. One adaptation is the involvement of significant others in therapy, however, there is no systematic description of the use of this adaptation in routine clinical practice. METHOD: An online survey of UK psychologists regarding the inclusion of significant others in individual therapy with people with intellectual disabilities. Data were analysed using qualitative content analysis. RESULTS: Ninety-five psychologists who work with people with intellectual disabilities provided responses to questions regarding the decision to include significant others in therapy, factors that make including significant others more or less likely and how the role of significant others is explained to them. CONCLUSIONS: Psychologists consider a range of factors in deciding the involvement of significant others. We discuss implications for training of therapists working with people with intellectual disabilities, issues of consent and how the roles of significant others are understood.

A pre-post evaluation of a digital intervention to improve psychosocial outcomes of caregivers of people living with cancer in Vietnam.

OBJECTIVES: To evaluate a co-designed intervention using digital resources "Vietnam Cancer Caring Coping" (V-CCC) on the health literacy, depression, and quality of life of caregivers supporting a cancer patient in oncology hospitals in Vietnam. METHODS: A pre-post quantitative evaluation with adult cancer caregivers across regional Oncology hospitals in Vietnam (Ho Chi Minh City, Da Nang, Can Tho, and Hue). Participants completed baseline and follow-up measures of health literacy (HLS-SF12) depression (PHQ-9) and Health-related Quality of Life (5Q-5D-5L). Participants accessed and reviewed V-CCC for a 2-week period. RESULTS: Two hundred and thirty-four caregivers completed pre and post-tests. Most participants were female (n = 143, 61%), married (n = 165, 70%), aged 18-44 (n = 155, 66%), lived rurally (n = 157, 67%). All health literacy scores of participants in post-intervention were significantly higher than that in pre-intervention across all domain's healthcare, disease prevention, and health promotion as well as the total score (p < 0.001). A significant reduction in the proportion of caregivers reporting PHQ-9 moderately severe/severe depression post-intervention was demonstrated (10.2 vs. 6.1%, respectively (p ≤ 0.001). No significant differences were observed pre and post-intervention across four 5Q-5D-5L health dimensions: mobility, self-care, usual activities, and pain/discomfort. Regarding anxiety/depression as measured by 5Q-5D-5L the proportion of participants who reported having moderate, severe, and extreme problems in pre- and post-intervention was statistically significant (32 vs. 24%), respectively (p = 0.0028). CONCLUSION: Co-designed digital resources can reduce health literacy inequities and improve psychological outcomes for cancer caregivers.

Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study.

BACKGROUND: Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. OBJECTIVE: This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. METHODS: We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. RESULTS: The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. CONCLUSIONS: Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

Development and preliminary validation of a questionnaire on the care needs of family carers of older individuals with disabilities in China: a mixed methods study.

BACKGROUND: Ensuring the wellness of older individuals with disabilities requires prioritising the care needs of their carers. However, current practice lacks validated tools to measure the needs of carers in home environments. Thus, this study aimed to create and test a questionnaire on the care needs of family carers of older people with disabilities in China. METHODS: We used a standard development process to generate the questionnaire. The pilot testing included cognitive interviews to ensure interpretation as intended. Furthermore, we used a cross-sectional study method to conveniently select 640 Chinese family carers of older people with disabilities from August 1, 2022, to June 11, 2023, for face-to-face investigation. Exploratory factor analysis (EFA) aided in project reduction and factor estimation, with 30 participants undergoing retest evaluations every two weeks. Confirmatory factor analysis (CFA) assessed the model's structural validity, while internal consistency and retest reliability validated its accuracy. RESULTS: These tests established the model: content validity, item analysis and EFA. Six factors extracted from the initial analysis explained 62.891% of the observation variance. CFA showed good model fit, and the questionnaire had good reliability and validity. The final questionnaire included 21 items focusing on six dimensions: care assistance (three items), care environment (three items), care information (three items), formal support (four items), care ability (six items) and self-development (two items). CONCLUSION: The care needs questionnaire effectively evaluates the needs of family carers in their caring activities.

The evaluation of a decision support system integrating assistive technology for people with dementia at home.

Introduction: With a decreasing workforce of carers and a transition from care homes to home care, people with dementia (PwD) increasingly rely on informal caregivers (ICs) and assistive technologies (ATs). There is growing evidence that ATs in the home environment can reduce workload for formal carers (FCs) and ICs, reduce care costs, and can have a positive influence on quality of life (QoL) for PwD and their caregivers. In practice, using multiple ATs still often implies using different separate point solutions and applications. However, the integral, combined use of the data generated using various applications can potentially enhance the insight into the health and wellbeing status of PwD and can provide decision support for carers. The purpose of the current study was to evaluate the use of a DSS that integrated multiple ATs into one dashboard through a small-scale field study. Methods: The current study presents the formative evaluation of a Decision Support System (DSS) connected to multiple ATs. This DSS has been developed by means of co-creation during an international project. The DSS provides an insight into the physical and cognitive status of a PwD, as well as an insight into sleep activity and general wellbeing. Semi-structured interview sessions were held in three countries (Netherlands, Italy, and Taiwan) with 41 participants to gain insight into the experiences of formal and informal carers and PwD with both the ATs and the DSS Alpha prototype dashboard. Results: The results showed that participants using the DSS were satisfied and perceived added value and a fit with certain care demands from the PwD. In general, ICs and FCs have limited insight into the status of PwD living independently at home, and in these moments, the DSS dashboard and AT bundle can provide valuable insights. Participants experienced the DSS dashboard as well-organized and easy to navigate. The accuracy of the data displayed in the dashboard is important, the context, and (perceived) privacy issues should be tackled according to all users. Furthermore, based in the insight gained during the evaluation a set of design improvements was composed which can be used to further improve the DSS for the Beta evaluation. Discussion and conclusion: The current paper evaluates a possible solution for excess AT usage and how the use of a DSS which integrated multiple AT into one single technology could support caregivers in providing care for PwD. The formative evaluation scrutinized the integration of the developed DSS and the composed bundle of ATs across diverse cultural contexts. Insights from multi-center observations shed light on user experiences, encompassing overall usability, navigational efficacy, and attitudes toward the system. FCs and ICs expressed positivity toward the DSS dashboard's design and functionalities, highlighting its utility in remote monitoring, tracking changes in the person's abilities, and managing urgent situations. There is a need for personalized solutions and the findings contribute to a nuanced understanding of DSS and AT integration, providing insights for future developments and research in the field of DSS for the care of PwD.