Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

Comparison of the EQ-HWB and EQ-HWB-S With Other Preference-Based Measures Among United States Informal Caregivers.

OBJECTIVES: Several measures have been used or developed to capture the health and well-being of caregivers, including the EQ Health and Well-being (EQ-HWB) and its short form, EQ-HWB-S. This study aimed to evaluate the psychometric properties and construct validity of the EQ-HWB/EQ-HWB-S in a US caregiver population. METHODS: A cross-sectional survey was conducted involving 504 caregivers. Eligible participants were 18+ years old, provided unpaid care to a relative/friend aged 18+ in the past 6 months, and spent on average of at least 1 hour per week caregiving. Survey included the following measures: EQ-HWB, Adult Social Care Outcomes Toolkit for Carers-Carer, CarerQol, and EQ-5D-5L. Psychometric properties were assessed using response distributions, floor/ceiling effects, Spearman's correlation for convergent validity, and effect sizes (ES) for known-group validity based on caregiving situations and intensity. RESULTS: The average age of caregivers was 49.2 (SD = 15.4), with 57.5% being female. More than half (54.4%) reported high caregiving intensity, and 68.3% lived with the care recipient. The EQ-HWB-S index showed a strong positive correlation with the EQ-5D-5L (rs = 0.72), Adult Social Care Outcomes Toolkit for Carers (rs = 0.54), and CarerQol (rs = 0.54) indices. Notably, the EQ-HWB-S index showed the largest ES among measures in differentiating caregiving scenarios with a large ES for caregiver's general health (d = 1.00) and small ES for caregiving intensity (d = 0.39). CONCLUSIONS: Results support construct validity of EQ-HWB and EQ-HWB-S as measures for assessing health and well-being of adult informal caregivers in comparison with other validated instruments. Differing levels of known-group validity across anchors emphasize the importance of selecting appropriate measures for caregivers, depending on research question and/or intervention aims.

Enhancing the provision of cancer nutrition information to support care through experience-based co-design: a mixed-methods study.

PURPOSE: Nutrition is essential within cancer care, yet patient and carer access to nutrition care and information is variable. This study aimed to (1) investigate patient and carer access and perceptions, and health professional views and practices, relating to cancer nutrition information and care; and (2) co-design interactive resources to support optimal nutrition care. METHODS: Patients and carers completed a survey regarding access to nutrition care and information. Seven multidisciplinary health service teams were invited to participate in a survey and focus group to assess barriers and enablers in nutrition practices. Focus groups were recorded, transcribed and thematically analyzed. Eligible patients, carers, and health professionals were invited to four virtual workshops utilizing experience-based co-design methods to identify nutrition priority areas and design resources. Workshop participant acceptability of the resources was measured. RESULTS: Of 104 consumer survey respondents (n = 97 patients, n = 7 carers), 61% agreed that it "took too much time to find evidence-based nutrition and cancer information", and 46% had seen a dietitian. Thirty-four of 38 health professionals completed the survey and 30 participated in a focus group, and it was identified the greatest barriers to delivering nutrition care were lack of referral services, knowledge or skill gaps, and time. Twenty participants (n = 10 patients and carers, n = 10 health professionals) attended four workshops and co-designed a suite of 46 novel resources rated as highly acceptable. CONCLUSION: Improved communication, training, and availability of suitable resources could improve access to and support cancer nutrition information and care. New, co-designed cancer nutrition resources were created and deemed highly acceptable to patients, carers, and health professionals.

Skills-based online self-help program for carers of people with an eating disorder (SupportED): A case series evaluation.

OBJECTIVE: To investigate the acceptability, feasibility, and preliminary effectiveness of "SupportED," a novel, online, self-paced skills-based program for carers/support people of those with lived and/or living experience of an eating disorder (ED). METHOD: Carers of a loved one with an ED were invited to undertake a five-module skills-based (one core module, four optional modules) online program at their own pace. Modules cover general information about EDs, communication, practical skills, treatment engagement, and recovery. Participants completed demographics and were assessed using EDSIS, CASK, and DASS-21 for caregiver burden, skills, and distress, respectively, at program completion and 3-month follow-up. Feedback on the program and modules was also collected. RESULTS: Most carers (65%; 82/126) completed the core module of the program, which is on par with other online learning programs. Nearly half of program completers responded to the 3-month follow-up (n = 39). On average, carers rated the program as relevant and useful and found the information validating and easy to understand, albeit a few carers found the program time-consuming and technically challenging. Intent-to-treat (ITT) linear mixed models demonstrated the preliminary effectiveness of the program for improving carer burden and skills, although the change in carer distress was non-significant. CONCLUSIONS: Results of this case series evaluation suggest SupportED is an acceptable and feasible program for carers and may improve burden and support skill development. Although the online, self-paced format was highly rated, small improvements to improve acceptability were suggested. Reasons for a lack of impact on carer distress are discussed. PUBLIC SIGNIFICANCE: This article describes a case series evaluation of "SupportED," an online skills-based support program for families, carers, and supporters of people with lived experience of an eating disorder. This is the first online carer support program that is designed to be inclusive of all carer types (e.g., partners, siblings) for all eating disorder presentations. Findings suggest the program's suitability and helpfulness for reducing carers' load and bolstering skills and knowledge.

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values.

OBJECTIVE: Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available. METHODS: Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample. RESULTS: The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance). CONCLUSIONS: The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.

Barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia: a qualitative study.

BACKGROUND: New technologies have brought about a new age of technology-enabled aids that can equip informal carers with the relevant resources for better care. These include but are not limited to facilitating access to healthcare providers, knowledge of caring for persons living with dementia, and sources of support for carers' well-being. This qualitative study explores barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia. METHODS: An exploratory qualitative study design was employed. Semi-structured interviews were conducted among 29 informal carers of persons living with dementia in Singapore recruited via convenience and snowball sampling. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to analyse the data. RESULTS: The participants in this study identified several barriers to using eHealth/mHealth platforms, including personal preference, apprehension, poor user experience and lack of skills. On the other hand, knowledge of dementia, caring for persons living with dementia and self-care, a list of resources, social support, location monitoring and alert systems, and the ability to manage appointments and transactions were valuable features for eHealth/mHealth platforms. CONCLUSIONS: Despite the underutilisation of eHealth/mHealth platforms, carers expressed a keen interest in using them if they are functional and capable of reducing their care burden. The findings from this study can contribute to developing content and features for eHealth/mHealth interventions aimed at lightening carers' burden in their day-to-day caring routine.

Children as next of kin's experiences, practices, and voice in everyday life: a systematic review of studies with Norwegian data (2010-2022).

Aims: This systematic review aims to identify and describe how children of parents with mental illness, substance dependence, or severe physical illness/injury, experience and practise their everyday life. Methods: The review followed the four stepwise recommendations of Harden and colleagues when including quantitative and qualitative studies on peoples' experiences and views. In all, 23 studies with data from Norway (2010-2022) have been included. Brown and Clark's thematic analysis was applied. Results: Three themes were constructed from the reviewed articles: (a) Children practice their relational agency by actively doing practical tasks, occasionally jobs to maintain family economy, and organising fun activities with the ill parent. (b) Emotional ambivalence when their own needs were set aside in favour of the parents. They loved their parents but also felt guilt, anger, disappointment, shame, fear of inheriting the illness and longed for a 'normal' everyday life. (c) Supportive contextual factors were, for example, at least one significant adult recognising them, participating in leisure activities, socialising with friends, and talking with other peers who shared similar experiences as next of kin. Obstructive factors were lack of information and recognition as well as silence and lack of dialogue within the family and/or health professional. Conclusions: There is a strong need for more knowledge and competence on the situation and needs of these children when it comes to professionals, parents and the public. Public health initiatives are needed to honour their agency and recognise their contributions in present time to prevent psychosocial problems later in life.

Social capital for carers of patients with advanced organ failure: a qualitative exploration of stakeholders' perspectives.

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.

Experiences of a communication-skills course for care partners of people living with dementia, empowered conversations: A qualitative framework analysis.

OBJECTIVES: Our aims were to examine whether an experiential course for care partners of people living with dementia, Empowered Conversations (EC), was acceptable to participants and to explore participants' perceptions of the impact of the course upon their communicative interactions. EC is based on an integrative model derived from psychological and linguistic theory and empirical evidence. EC is based on mentalisation theory, perceptual control theory and linguistic theory (The Communicative Impact Model). METHODS: Qualitative data were collected via 28 semistructured interviews. Framework analysis was used to analyse data. RESULTS: Three superordinate themes, 'improved communication', 'improved well-being' and 'support through others' were identified. Twenty-seven out of the 28 participants described feeling that they were able to better connect with the person living with dementia that they were supporting through attending EC. CONCLUSIONS: The findings indicated that EC was acceptable and beneficial to care partners. Care partners developed a range of strategies and understandings that enabled them to communicate better with the person they were supporting, enhanced well-being and relationships, as well as developing social networks. This is the first qualitative study to examine a psychosocial intervention for care partners of people living with dementia using a non-CBT framework and indicates that perceived control could influence how care partners respond to stress and difficulties.

Music therapy for supporting informal carers of adults with life-threatening illness pre- and post-bereavement; a mixed-methods systematic review.

BACKGROUND: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). METHODS: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. RESULTS: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. CONCLUSIONS: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. SYSTEMATIC REVIEW PRE-REGISTRATION: PROSPERO [CRD42021244859].

How Informal Carers Support Video Consulting in Physiotherapy, Heart Failure, and Cancer: Qualitative Study Using Linguistic Ethnography.

BACKGROUND: Informal carers play an important role in the everyday care of patients and the delivery of health care services. They aid patients in transportation to and from appointments, and they provide assistance during the appointments (eg, answering questions on the patient's behalf). Video consultations are often seen as a way of providing patients with easier access to care. However, few studies have considered how this affects the role of informal carers and how they are needed to make video consultations safe and feasible. OBJECTIVE: This study aims to identify how informal carers, usually friends or family who provide unpaid assistance, support patients and clinicians during video consultations. METHODS: We conducted an in-depth analysis of the communication in a sample of video consultations drawn from 7 clinical settings across 4 National Health Service Trusts in the United Kingdom. The data set consisted of 52 video consultation recordings (of patients with diabetes, gestational diabetes, cancer, heart failure, orthopedic problems, long-term pain, and neuromuscular rehabilitation) and interviews with all participants involved in these consultations. Using Linguistic Ethnography, which embeds detailed analysis of verbal and nonverbal communication in the context of the interaction, we examined the interactional, technological, and clinical work carers did to facilitate video consultations and help patients and clinicians overcome challenges of the remote and video-mediated context. RESULTS: Most patients (40/52, 77%) participated in the video consultation without support from an informal carer. Only 23% (12/52) of the consultations involved an informal carer. In addition to facilitating the clinical interaction (eg, answering questions on behalf of the patient), we identified 3 types of work that informal carers did: facilitating the use of technology; addressing problems when the patient could not hear or understand the clinician; and assisting with physical examinations, acting as the eyes, ears, and hands of the clinician. Carers often stayed in the background, monitoring the consultation to identify situations where they might be needed. In doing so, copresent carers reassured patients and helped them conduct the activities that make up a consultation. However, carers did not necessarily help patients solve all the challenges of a video consultation (eg, aiming the camera while laying hands on the patient during an examination). We compared cases where an informal carer was copresent with cases where the patient was alone, which showed that carers provided an important safety net, particularly for patients who were frail and experienced mobility difficulties. CONCLUSIONS: Informal carers play a critical role in making video consultations safe and feasible, particularly for patients with limited technological experience or complex needs. Guidance and research on video consulting need to consider the availability and work done by informal carers and how they can be supported in providing patients access to digital health care services.

A qualitative study exploring nurses' experiences of supporting South Asian people with dementia and their family carers.

AIMS: To explore nurses' experiences of providing support to South Asian (SA) people with dementia and their family carers and to identify barriers and enablers of good transcultural care. DESIGN: A qualitative, phenomenological design was used. METHODS: Fifteen registered community and in-patient nurses were recruited via one NHS Mental Health Foundation Trust. Nurses were from diverse backgrounds (Black, Ghanaian, Irish, Mauritian and White), 13 females and 2 males, and had been qualified from between 2 and 49 years. One-to-one semi-structured interviews were conducted between July and October 2019. RESULTS: A thematic analysis identified three themes. 'Communication challenges' highlighted the impact of language barriers and the consequences of misunderstandings due to a dissonance in cultural values between nurses and interpreters. 'The bi-directional impact of culture' identified the two-way dynamics of transcultural work, the process of countering mutual stigma, and revealed an original perspective on how 'cultural desire' grows through practice experiences rather than being a prior motivation for learning. 'Learning experiences' showed that most learning was informal, experiential and prolonged, with nurses feeling they had unmet learning needs. CONCLUSION: Nurses have minimal training opportunities and are under-supported in their transcultural work, potentially perpetuating the disadvantages that SA people with dementia and their families face in relation to healthcare. Enhanced cultural understanding of self and others and application of specific communication strategies could support nurses, together with interpreters, to build rapport and effective working relationships with each other and service users. IMPACT: Transcultural nursing is a key competency, but nurses experience difficulties with providing care which is recognized as effective by SA family carers. The development of more acceptable and effective services requires improved mutual cultural understanding between nurses, interpreters and families, underpinned by joint brief training interventions, leading to more effective professional communication, better care outcomes and improved satisfaction with services.

A post-diagnosis information and support programme for dyads-People living with dementia or mild cognitive impairment and family carers: A feasibility study.

AIM: The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings. DESIGN: A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility. METHODS: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators. RESULTS: Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members. CONCLUSION: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months. IMPACT: This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting. REPORTING METHOD: The authors have adhered to the EQUATOR STROBE Statement. PATIENT OR PUBLIC CONTRIBUTION: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.

Psychological and social impacts on carers of children with a gastrostomy: a systematic review.

To determine the psychological and social impacts of a gastrostomy in childhood on carers and families. A systematic search of OVID, Medline and Embase was undertaken using the subject headings and word variants for 'gastrostomy', 'children' and 'carers'. Studies included were those describing the impact of gastrostomies in children on family and carers, published in English. 564 articles were identified. After exclusion of duplicates, abstract and full text screening, 25 were included. Carer anxiety increases in the period leading up to, and for a short period following gastrostomy insertion. 3-6 months following gastrostomy insertion, anxiety reduced (reduced State-Trait Anxiety Inventory scores), carer quality of life improved (higher Quality of Life Scale scores), and carer satisfaction with the child's gastrostomy increased (improved Satisfaction Questionnaire with Gastrostomy Feeding scores). Reported changes in carer quality of life in the longer term following a child's gastrostomy insertion were mixed. The social and psychological burden on caregivers of a gastrostomy in childhood varies over time. There is evidence that paediatric gastrostomies have positive effects on carers' psychological and social well-being; however, aspects of carers' quality of life remain impaired. Carer education and support are vital to reduce the burden placed on carers.

Understanding family carer experiences and perceptions of engagement in delirium prevention and care for adults in hospital: Qualitative systematic review.

AIM: To identify, describe and synthesise what is known about family carers' experiences and perspectives of engagement in delirium prevention and care for adults in hospital. DESIGN: Systematic review and synthesis of qualitative evidence. DATA SOURCES: Comprehensive literature search within PubMed, CINAHL, EMBASE, Scopus, Cochrane Central and PsycInfo databases to August 2022. Peer reviewed original qualitative research published in English. METHODS: Data were extracted using Covidence systematic review software. Methodological quality was reviewed against the Critical Appraisal Skills Program (CASP) Qualitative Checklist. Thematic synthesis was used to develop analytical themes. Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) framework was applied to findings. RESULTS: Of 3429 records identified, 29 met criteria for final inclusion. Studies included a range of settings (intensive care, medical and surgical wards) and family carer types (spouse, daughter, parent and friend). Three primary themes Shared Caregiving, Partnership and Support, Communication for Shared Understanding and three cross-cutting contextual themes Care Transitions, Family Carer Context and Hospital Context were identified. Family carers have mixed experiences of involvement in delirium care and prevention. Family carer engagement in care impacted perceptions of care quality and their own self-efficacy. Where person-centred care expectations were not met, some family carers adopted compensatory or care contingency strategies. Information sharing and timely support from hospital staff who understood the carer context supported carer involvement. Supportive physical environments and addressing power imbalances allowed greater engagement. CONCLUSION: Family carers often wish to be involved in delirium prevention and care, but need to be recognised as individuals, listened to, informed and supported to optimise their contribution. IMPACT: The review findings can guide health professional and decision makers to optimise family carer involvement in delirium care programs. PROTOCOL REGISTRATION: PROSPERO [CRD42020221854]. REPORTING: ENTREQ. No Patient or Public Contribution.

Through the Eyes of a Young Carer: A Photo Elicitation Study of Protective Resilience.

Caregiving is recognised as a source of stress with potential for negative health impacts as well as positive outcomes and development of resilience. For young carers, children, and adolescents providing care for close family members, adaptation through resilience is crucial, yet work using a resilience approach is limited. This study explored protective factors and pathways to resilience in a sample of young carers, through application of the socioecological model in caring relationships. An in-depth qualitative approach was used, with in-person interviews facilitated by auto-driven photo elicitation. Deductive thematic analysis was applied, framed by three levels (individual, community, and society) of the socioecological model of resilience. Twelve participants (nine girls and three boys) aged 5-18 years, each providing care to a family member, were recruited using opportunity and volunteer sampling via carers' centres in the southwest of England. Ten key themes were identified, four at the individual level: pre-empting challenges and planning, cognitive strategies, emotional strategies, and seeking solitude; three at the community level: family support, friendships, and pets and inanimate objects; and three at the society level: professional support, access to caregiver activities and community, and being outdoors. The location of themes at each level indicated relevance of the socioecological model to identification of protective factors in a young carer population. These findings have important applications for guidance to charities and organisations supporting young carers. Identification of factors that promote resilience offers support for the development of well-informed interventions, which harness these protective factors to develop resilience and improve health for young carers.

Characteristics, correlates of burden and support service use of a help-seeking carers of loved ones with an eating disorder.

OBJECTIVE: Carers, vital in the care of individuals with an eating disorder (ED), experience substantial caregiving burden and unmet needs. This study aims to identify factors which contribute to the burden experienced by carers of a loved one with an ED and their support service usage. METHOD: Carers (N = 245) completed an online questionnaire assessing demographic, carer-specific, individual and ED factors. Multivariate relationships with caregiving burden were examined using forwards elimination to produce a parsimonious model of carer burden. RESULTS: The final model, consisting of caregiving factors (e.g., relationship type, skills), carer mental health) and loved one wellbeing (i.e., purging symptoms, depression/self-harm/suicidality) explained a large proportion (62%) of the variance in carers' burden. Carer mental health, caregiving skills and relationship type (e.g., parent, spouse, sibling) were key predictors of carers' burden. Nearly a third of carers had not used any carer support services, yet most carers expressed an interest in such services. CONCLUSION: Caregiving burden is determined by experiences and skills of the carer as well as the person they are caring for. Carer support services should continue to address the general wellbeing of carers and caregiver skills. Research into the barriers to carer support uptake is needed.

Investigating self-blame and trauma symptoms in parents of young people with anorexia nervosa.

BACKGROUND: Caring for a young person with anorexia nervosa (AN) has been associated with psychological distress and found to be a traumatic experience. This can have an impact on patient and family outcomes. OBJECTIVE: This study aimed to investigate whether self-blame cognitions contribute to post-traumatic stress disorder (PTSD) symptoms in parents of young people with AN. METHODS: A cross-sectional design was used. One hundred and twenty-three parents of young people with AN completed a range of questionnaires assessing self-blame cognitions and PTSD symptoms. RESULTS: Overall, levels of self-blame cognitions were significantly higher in those experiencing higher levels of PTSD symptoms compared to low levels. Additionally, levels of self-blame cognitions significantly predicted PTSD symptoms over and above demographic factors and illness severity, accounting for 22% of unique variance in PTSD symptoms. CONCLUSIONS: The findings suggest that negative appraisals regarding self-blame for their child's eating disorder contributed to the potential maintenance of PTSD symptoms. Parents presenting with thoughts of self-blame would benefit from further support to reduce these feelings and, subsequently, reduce carer distress.

Lost in between-the transition process from a child and adolescent eating disorder service to adult mental health services in the German health care system.

INTRODUCTION: In young adults with anorexia nervosa (AN), the process of transition from a child and adolescent mental health service (CAMHS) to an adult mental health service (AMHS) has been recognized as critical, and many patients fear falling through the gap between the two types of service. As reports about the transition process in emerging adults with AN are scarce, the present study aimed to explore the problems and experiences of this age group. METHOD: We screened our registry for patients with AN who had been treated as inpatients during childhood and/or adolescence and come of age during the last 3 years. Thirty-two female patients [mean age 20.3 (1.2) y.] agreed to participate in a semistructured personal or telephone interview assessing their demographic and clinical data, whether they had finalised the transition, and their wishes and experiences regarding the transition process. RESULTS: Only approximately one-third of the participants had already undergone the transition. Nearly 60% of the former patients were still cared for by a CAMHS, and only 12.5% had stopped treatment for AN. Approximately 60% were exclusively or additionally cared for by their general practitioner. More than 50% of the participants still lived with their parents. Approximately 90% of the participants who remained in a CAMHS expressed concerns about transitioning, mostly about losing their trusted therapist and the assumption of personal responsibility. CONCLUSION: Patients with AN often delay the transition from a CAMHS to an AMHS, which they experience as intimidating and overwhelming. Thus, patients should be better prepared for the transition, which should be linked to "developmental readiness" and not to chronological age. Because many patients still live with their family of origin, parents and their family physician should be closely involved in the transition process.

Experiences of formal caregivers of elderly inpatients with physical disabilities in China: a qualitative study.

AIM: To explore the views and experiences of formal caregivers caring for older inpatients with physical disabilities. METHODS: It was a qualitative phenomenological study. Using purposive sampling, twelve formal caregivers were chosen in a tertiary comprehensive hospital in Hangzhou, China. Semi-structured, face-to-face interviews were conducted, guided by open-ended questions that focused on gaining rich insights into participants' views and experiences. Coding reliability thematic analysis was used to guide data analysis and categorize, based on Lazarus and Folkman's theory of transactional coping. RESULTS: Four themes emerged from the data analysis: (1) Caregiving Threats. (2) motivations. (3) Responsibility Management. (4) Fear. CONCLUSION: Despite facing significant pressure at work, formal caregivers of elderly inpatients with physical disabilities possess the drive and various coping strategies to excel in their role. Identifying caregivers' experiences of care can be helpful in improving resilience to stress and maintaining stability in formal caregivers.