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.

BACKGROUND: 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.
RESULTS: 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.
CONCLUSIONS: 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.
UNASSIGNED: 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.

OBJECTIVE: 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.
CONCLUSIONS: 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.
UNASSIGNED: 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.

BACKGROUND: 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).
CONCLUSIONS: 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.
UNASSIGNED: 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.

UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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).
UNASSIGNED: Co-designed digital resources can reduce health literacy inequities and improve psychological outcomes for cancer caregivers.

BACKGROUND: Families and carers are pivotal in supporting loved ones experiencing eating disorders. This role can bring immense distress and burden, yet the experience of caring for someone with an enduring eating disorder has had minimal research focus. Thus, the purpose of this study is to give voice to carers empowering their stories to increase awareness and understanding, which could inform support to carers and consequently people with a lived and/or living experience of eating disorders.
METHODS: Semi-structured interviews were conducted with 9 carers supporting individuals who had been experiencing an eating disorder for 7 or more years. Data were collected and analysed using narrative inquiry approach.
RESULTS: Carers\' narratives revealed feelings of guilt and personal failure; a profound sense of disillusion with current treatment approaches; and immense grief and anguish. As they negotiated a tenuous relationship with hope and the uncertainty of their loved one\'s future, carers spoke to a complex myriad of feelings of acceptance, letting go, and forging on.
CONCLUSIONS: Carers deserve to have their voices heard where they are too often silenced. Their narratives provide an urgent call for transformation in our treatments for eating disorders and further involvement of carers within the treatment journey, and their lived experience perspectives have great potential to guide this endeavour.
METHODS: Level V, qualitative interviews.

An integrative review methodology was employed, following PRISMA guidelines and Whittemore and Knafi\'s method for integrative review. Thus, the review synthesised the findings of empirical literature published between 2005 and 2023 drawn from four databases: CINAHL, MEDLINE, PsycINFO and Scopus. From the seven studies that met the inclusion criteria, a number of themes emerged: (a) relief of carer burden; (b) benefits for individuals with Mental Illness (MI); (c) barriers to accessing respite care; and (d) inappropriate services model for respite care for individuals with MI. The review findings indicate that using respite care services can decrease a carer\'s burden and can positively impact both carers and individuals with MI. Conversely, respite care may cause an increase in carers\' stress levels due to the lack of service availability, insufficient knowledge and understanding about respite care services for carers, respite accessibility challenges accessible for people with MI and the reluctance of people with MI to accept respite care.

Violent, abusive, and harmful behavior enacted by older adults upon their caregivers represents a distressing and frequently disregarded facet within the domain of caregiving. This qualitative study aims to (a) explore family caregivers\' experiences of violent, abusive, and harmful behavior by the older person and (b) explore how violent, abusive, and harmful behavior by the older person affects family caregivers\' mental health. This qualitative study encompassed 393 participants, with a diverse age range spanning from 40 to 72 years. All the interviews went through the process of content analysis. For the first objective, findings indicated six emerging themes: Frequent and extreme verbal violence (77.3%); feeling manipulated and controlled by older adults (74.7%); experiencing unpredictable illegal circumstances provoked by older adults (62.1%); experiencing damaging financial issues provoked by older adults (43.1%); experiencing physical violence (34.2.%); and experiencing sexual violence (31.1%). The second objective highlighted four themes: depression and anxiety (89.9 %), anger (81.2%), feeling morally isolated (78.3%), and emotional outbursts (65.1%). Brazilian participants mainly experienced frequent and extreme verbal violence (62.4%). Moreover, depression and anxiety were mainly verbalized by English participants (84.3%). These findings underscore the significant toll that older individuals\' violent, abusive, and harmful behavior can have on the mental well-being of family caregivers. This study sheds light on the complex experiences faced by family caregivers and emphasizes the urgent need for targeted interventions to foster healthier caregiving environments. Older individuals\' violent, abusive, and harmful behavior toward their caregivers has received limited attention in research and public discourse. The findings of this study call attention to the pressing need of addressing this issue, given its detrimental impact on the mental health of family carers. Recognizing the significance of this topic demands a comprehensive and targeted approach to ensure the well-being and safety of caregivers and older adults.

BACKGROUND: The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes.
OBJECTIVE: The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes - Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19.
METHODS: The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts\' hub. Pre-, post- and follow-up evaluation data were collected.
RESULTS: Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001).
CONCLUSIONS: Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.

Alongside typical parenting challenges, initial condition-specific research suggests thadifferent experiences and support needs.t parents of children with different visible differences may experience similar psychosocial difficulties. Despite this, large-scale cross-condition research to identify risk and protective factors for parental distress and psychosocial adjustment has been lacking. Two hundred and nine parents and carers of children with a range of visible differences completed an online survey comprised of standardised outcome measures, study-specific measures, and open-ended questions. Multiple regression modelling identified possible risk and protective factors, and data collected via open-ended questions were analysed using content analysis. Findings support themes previously identified in small-scale cross-condition qualitative research with parents of children with visible differences. Risk factors for parental negative affect and stress included parental reports of the noticeability of their child\'s visible difference and teasing. Protective factors included good parent-child communication, self-compassion, knowledge of their child\'s condition and satisfaction with treatment. The risk and protective factors identified provide important insight into the experiences of this parent population and indicate possible avenues for psychosocial intervention.