Carer Support Research Articles

FC18: Can rehabilitation improve functional independence of older people with dementia? A pragmatic randomized controlled trial (RCT) of the Interdisciplinary Home-bAsed Reablement Program (I-HARP)

Objective:The Interdisciplinary Home-bAsed Reablement Program (I-HARP) integrates evidence-based rehabilitation strategies into a dementia-specific person-centred, time-limited, home-based, interdisciplinary rehabilitation package. I-HARP was a 4-month model of care, incorporated into community aged care services and hospital-based community geriatric services. I-HARP involved: 8-10 individually tailored home visits by occupational therapist and registered nurse; 2-4 optional other allied health sessions; up to A$1,000 minor home modifications and/or assistive devices; and three individual carer support sessions. The aim of the study was to determine the effectiveness of I-HARP on the health and wellbeing of people living with dementia and their family carers.Methods:A multi-centre pragmatic parallel-arm randomised controlled trial compared I-HARP to usual care in community-dwelling people with mild to moderate dementia and family carers in Sydney, Australia (2018-22). Assessments of the client’s daily activities, mobility and health-related quality of life, caregiver burden and quality of life were conducted at baseline, 4- and 12-month follow-up. Changes from baseline were compared between groups.Results:Of 260 recruited, 232 (116 dyads of clients and their carers, 58 dyads per group) completed the trial to 4-month follow-up (89% retention). Clients were: aged 60-97 years, 63% female, 57% with mild dementia and 43% with moderate dementia. The I-HARP group had somewhat better mean results for most outcome measures than usual care at both 4 and 12 months, but the only statistically significant difference was a reduction in home environment hazards at 4 months (reduction: 2.29 on Home Safety Self-Assessment Tool, 95% CI: 0.52, 4.08; p=.01, effect size [ES] 0.53). Post-hoc sub-group analysis of 66 clients with mild dementia found significantly better functional independence in the intervention group: 11.2 on Disability Assessment for Dementia (95% CI: 3.4, 19.1; p=.005; ES 0.69) at 4 months and 13.7 (95% CI: 3.7, 23.7; p=.007; ES 0.69) at 12 months.Conclusion:The I-HARP model enhanced functional independence of people with mild dementia only but not significantly in people with moderate dementia, so did not result in better outcomes in the group overall. A different type of rehabilitation model or strategies may be required as dementia becomes more severe.

A Study to Demonstrate Impact of Active Referral of Acute Leukemia Patients and Families to Patient Organization at Diagnosis

Introduction and background Key factors that relate to worse quality of life (QoL) in acute leukemia patients were identified in a global survey conducted by the Acute Leukemia Advocates Network (ALAN) such as age, gender, socioeconomic state, social functioning (e.g., worries about family and friends, feeling isolated, finances, etc.[ Pemberton-Whiteley et al, 2023]). These factors should be taken into consideration by healthcare professionals caring for acute leukemia patients to enable a robust support system. The role of patient organizations (PO) in the care of the patient and family is becoming increasingly important, however, patients are often not aware of the existence of POs and physicians and providers are often unsure of the role and benefits of PO, which then leads to a delay in patients reaching out to POs (for information, education resources, support resources [support groups, online chat, peer-to-peer support, financial support, psychological support, carer support], etc.). To date, there is limited evidence showing the importance of support offered to patients and their families. The ALAN, the Mayo Clinic and a national PO, are conducting a study that aims to assess both retrospectively and prospectively the benefits of active referrals to PO for patients with acute leukemia. Hypothesis We hypothesize that active referrals of adult patients with acute leukemia to PO at diagnosis has a positive impact on patient-reported outcomes and patient experience. Methods Here we present the study methodology that uses a quantitative method via administration of surveys at different timepoints. We plan to do both a retrospective and prospective evaluation of patients (target N=200) previously referred and new patients with a diagnosis of acute leukemia. There are 4 scenarios which are presented in Figure 1. For patients already diagnosed and evaluated at Mayo Clinic (scenarios 3 and 4), we will contact them either via email or portal message to see if they are interested in the study. A study consent form will be sent to them. If they indicate interest and consent, they will be contacted to understand whether they were referred to or sought help from PO around the time of their diagnosis or subsequently, and a questionnaire will be sent to them to assess if PO services helped them in their disease or treatment course. For newly diagnosed patients (scenarios 1 and 2), active referral to PO using PO referral online form will be provided and they will receive study consent form during their first visit at Mayo Clinic. A questionnaire will be sent to them to understand if they used the services from PO after the referral and if yes, to assess if PO services helped them in their disease or treatment course. In addition, every month from diagnosis up to 6 months, all patients who consented to take part in the study will be asked to complete the validated HM-PRO QoL assessment tool (an instrument designed to measure patient-reported outcomes in those with hematological malignancies), to assess QoL and symptoms and change over time. Conclusion This is a pilot study aiming at building evidence on the importance of support offered to patients and their families and demonstrating the impact of an active referral at diagnosis. 1 Pemberton-Whiteley Z, Nier S, Geissler J, Wintrich S, Verhoeven B, Christensen RO, Salek S, Oliva EN, Ionova T, Bradley J. Understanding quality of life in patients with acute leukemia, a global survey. J Patient Cent Res Rev. 2023;10:21-30

AHP P05 Attendee perceptions of a support group for patients and carers following Oesophageal or Gastric resection

Abstract Background The benefits of patient support groups are widely recognised, playing a vital role in cancer survivorship. Patients undergoing Oesophageal or gastric resection for cancer are presented with an array of unique post operative and life altering symptoms. Patients and carers alike can be profoundly affected as they live with their cancer diagnosis and the impact of the substantial surgery. The ‘Little and Often’ support group was established 16 years ago to support patients and carers in this regard, meetings are held monthly at a hospital site venue and combine informal conversation with Health care professional speakers.as requested by attendees. Methods A survey was conducted at the ‘Little and Often’ support group amongst attendees, patients and carers alike (n=17). The survey was a combination of open questions and rating scales and was submitted anonymously. Patients and carers were also asked to describe their feelings prior to attending the support group, and to describe how they felt after attending the support group to see if attendance had a bearing. The results were collated and reflected upon to inform the format of future support group meetings. Results The results tell us that most patients and carers find the ‘Little and Often’ support group valuable to their cancer journey and survivorship. Many affirmative aspects were identified that had a positive impact on patient experience, and 82% attendees stated there was nothing they did not like about the group. 100% attendees liked having a Health care professional present and accessible at the group. 100% of attendees either strongly agreed or agreed that the group had made an important difference in their life in a safe space that left them with hope for the future. Conclusions This survey reinforces the perceived benefits of patients and their carers attending the Little and Often support group. The format of having a health care professional speak alongside informal conversation was welcomed by the attendees. The group facilitates a patients transition from feeling alone and isolated at times to feeling hopeful, supported, and positive about the future. It would be prudent to repeat this survey on a larger cohort of patient across a longer time scale, a validated quality of life assessment tool can be utilised to monitor the impact of the Little and Often group on patients and carers.

Support needs of carers of cancer patients and the effects of the patient's age and cancer type on their needs

PurposeThis study aimed to investigate support needs of carers of cancer patients and the effects of the patient's age and cancer type on their needs. MethodsIn this descriptive and comparative study, the data were collected from the carers (n = 120) of the patient admitted to inpatient and outpatient clinics of a university hospital between June 2021 and October 2022. Patient identification form, carer identification form, and Carer Support Needs Assessment Tool (CSNAT) were used for data collection. The comparisons of the support needs were done for the carers according to the patient's age (<65 versus ≥65 years) and cancer type (hematological malignancies versus solid tumors). ResultsCaring duration (19.78 ± 29.64 vs 10.33 ± 18.77 months) and caring hours per week (47.58 ± 26.90 vs 32.75 ± 25.75 h) were high in those caring for older adults. Carers of older adults need more support in providing personal care for their relatives (eg dressing, washing, toileting) (X2 = 8.000, p = 0.005). Carers of patients with hematological malignancies need more support in understanding their relative's illness (X2 = 6.136, p = 0.013), having time themselves in the day (X2 = 4.089, p = 0.043), managing their relative's symptoms, including giving medicines? (X2 = 5.263, p = 0.022), and their beliefs or spiritual concerns (X2 = 4.728, p = 0.030) compared to the carers of the patients with solid tumors. ConclusionThe support needs of the carers vary depending on the patient's age and cancer type. Carers of older adults and patients with hematological malignancies need more support.

The experience of bereaved cancer carers in rural and regional areas: The impact of the COVID-19 pandemic and the potential of peer support.

Caring for someone with cancer during end of life care can be a challenging and complex experience. Those living in rural and regional areas are less likely to have local healthcare services and may be physically isolated. Even where support services such as respite do exist, they may be less likely to be accessed due to the time burden in travelling to services. This was compounded by the COVID-19 pandemic. To understand the potential benefits of peer support for bereaved carers of people with cancer from rural and regional locations during the COVID-19 period. Phone interviews were conducted with bereaved cancer carers living in rural and regional areas in Victoria. Semi-structured interviews were used, and participants were asked about their experience as a carer, bereavement and the potential for peer support. Interviews were audio recorded and transcribed verbatim; transcripts were coded and a thematic analysis was conducted. 12 interviews were conducted. Carers were mostly female (85%) and were on average 58 years of age (range 42-71). Interviews lasted an average of 58 minutes (range 53-91 minutes). Three themes were derived from the data; 1) Supportive care needs while caring and the impact of COVID-19; 2) Isolation during bereavement compounded by the COVID-19 pandemic; and 3) Peer support requires flexibility to meet diverse needs. Peer support has potential to assist bereaved carers of people with cancer. A co-design approach may be beneficial for developing a flexible model for supporting and linking carers together.

Abstract 16949: The Effects of the Technology-Based Family-Centered Empowerment (T-FamE) Heart Failure Transitional Program: Preliminary Analysis of a Randomized Controlled Trial

Introduction: Health digitization and advanced dyadic science offer new opportunities to enhance the transitional care model for heart failure (HF). The T-FamE program a transitional care model integrating digital health and optimized carer support to enhance the post-discharge outcomes of HF patients. Hypothesis: The T-FamE was more effective than usual care to enhance self-care, perceived control, family function, HRQoL and hospital readmission of HF patients. Methods: From Aug 2021 to March 2022, a RCT randomized 170 post-discharge HF patients (mean age = 69.0; SD=11.5; NYHA Grade II/III/IV = 53.9/40.6/.5.5%. LVEF&lt;40% =58.5%) to the T-FamE or usual care. The 12-week nurse-delivered T-FamE comprises an interactive mobile Apps, which allows i) proactive health monitoring with tailored autonomous guideline-based feedback; ii) family-centerd goal-setting on self-care, iii) personalized drug education, iv) mobile access to nurse, v) video-based HF compass for rehabilitation and self-care. The cardiac nurse conducted three monthly visits for family-based empowerment on disease management. Outcome evaluation by Self-care Heart Failure index, Self-care Self-Efficacy Scale, Control Attitude Scale, Family Functioning Device and EuroQoL at baseline and post-test. Results: Two-way analysis of covariance showed significant greater improvement of T-FamE group on self-care maintenance (F=21.46, p&lt;0.001, η 2 p =0.113), management (F=22.52, p=0.01, η 2 p =0.118), symptom perception (F=69.70, p&lt;0.001, η 2 p =0.29) and confidence (F=13.36, p&lt;0.001, η 2 p =0.073) than the control. They have greater improvement in EuroQoL (F=5.78, p=0.017, η 2 p =0.033) and sense of control (F=5.78, p=0.017, η 2 p =0.033), and significantly lower number ore readmission in one year (-0.278 (95%CI=-0.54, -0.008, p=0.043). Conclusions: The T-FamE is effective to improve the self-care, HRQL and readmission outcomes. Digitalized transitional care model with optimized family support play explain the therapeutic benefits. Autonomous response to health monitoring data may enhance self-care decision-making.

Supporting family carers in general practice: a scoping review of clinical guidelines and recommendations

BackgroundIncreasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role.MethodsA scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O’Malley’s framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020.ResultsThe searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways.ConclusionOur review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.

Designing remote synchronous auditory comprehension assessment for severely impaired individuals with aphasia.

The use of telepractice in aphasia research and therapy is increasing in frequency. Teleassessment in aphasia has been demonstrated to be reliable. However, neuropsychological and clinical language comprehension assessments are not always readily translatable to an online environment and people with severe language comprehension or cognitive impairments have sometimes been considered to be unsuitable for teleassessment. This project aimed to produce a battery of language comprehension teleassessments at the single word, sentence and discourse level suitable for individuals with moderate-severe language comprehension impairments. Assessment development prioritised response consistency and clinical flexibility during testing. Teleassessments were delivered in PowerPoint over Zoom using screen sharing and remote control functions. The assessments were evaluated in 14 people with aphasia and 9 neurotypical control participants. Modifiable assessment templates are available here: https://osf.io/r6wfm/. People with aphasia were able to engage in language comprehension teleassessment with limited carer support. Only one assessment could not be completed for technical reasons. Statistical analysis revealed above chance performance in 141/151 completed assessments. People with aphasia, including people with moderate-severe comprehension impairments, are able to engage with teleassessment. Successful teleassessment can be supported by retaining clinical flexibility and maintaining consistent task demands. What is already known on the subject Teleassessment for aphasia is reliable but assessment of auditory comprehension is difficult to adapt to the online environment. There has been limited evaluation of the ability of people with severe aphasia to engage in auditory comprehension teleassessment. What this paper adds to existing knowledge Auditory comprehension assessment can be adapted for videoconferencing administration while maintaining clinical flexibility to support people with severe aphasia. What are the potential or actual clinical implications of this work? Teleassessment is time and cost effective and can be designed to support inclusion of severely impaired individuals.

Evaluation of Elderly Fall Detection Systems using Data Analysis

As the global population continues to age, it is more important to ensure the safety and wellbeing of senior citizens. Falls are a frequent and dangerous concern for elders, frequently resulting in fatalities or very serious injuries. Modern technology, such as the Elderly Fall Detection System, have been created to solve this issue. This technology attempts to detect falls quickly and react to them, offering aid right away and maybe saving lives. These studies identify a fall when the tri-axial accelerometer reading from a wearable device exceeds the predetermined threshold. Less complexity and computational expense compared to other approaches is one of the main benefits of adopting threshold-based methods. Finding the right threshold value, however, to accurately identify all falls without confounding them with certain ADL, has proven to be a challenging issue. Early Intervention and Medical Aid: Being independent and able to live in one's own house are two things that many elderly people enjoy. Support for carers and peace of mind: detection systems not only aid the elderly but also provide their carers peace of mind. Cost-cutting: Falls among the elderly frequently lead to hospital stays, rehab, and higher healthcare expenses. The Weighted Product Model (WPM) is a technique for ranking and evaluating alternatives based on a variety of factors. It is an easy and obvious method that enables decision-makers to weigh the relative weight of many variables and make wise decisions. Smart surveillance system, Smart cane, Smart Carpet, Smart phone/watch and app. Unobtrusiveness, reliability, privacy, Cost. As the global population continues to age, it is more important to ensure the safety and wellbeing of senior citizens. Falls are a frequent and dangerous concern for elders, frequently resulting in fatalities or very serious injuries The Weighted Product Model (WPM) is a technique for ranking and evaluating alternatives based on a variety of factors Unobtrusiveness, reliability, privacy, Cost, smart phone is the highest and smart carpet is the lowest

Adolescent Young Carers Who Provide Help and Support to Friends.

Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

Impact of interventions to improve recovery of older adults following planned hospital admission on quality-of-life following discharge: linked-evidence synthesis.

To understand the impact of multicomponent interventions to improve recovery of older adults following planned hospital treatment, we conducted two systematic reviews, one of quantitative and one of qualitative evidence, and an overarching synthesis. These aimed to: • understand the effect of multicomponent interventions which aim to enhance recovery and/or reduce length of stay on patient-reported outcomes and health and social care utilisation • understand the experiences of patients, carers and staff involved in the delivery of interventions • understand how different aspects of the content and delivery of interventions may influence patient outcomes. We searched bibliographic databases including MEDLINE ALL, Embase and the Health Management Information Consortium, CENTRAL, and Cumulative Index to Nursing and Allied Health Literature and Allied and Complementary Medicine Database, conducted forward and backward citation searching and examined reference lists of topically similar qualitative reviews. Bibliographic database searches were completed in May/June 2021 and updated in April 2022. We sought primary research from high-income countries regarding hospital inpatients with a mean/median age of minimum 60 years, undergoing planned surgery. Patients experienced any multicomponent hospital-based intervention to reduce length of stay or improve recovery. Quantitative outcomes included length of stay and any patient-reported outcome or experience or service utilisation measure. Qualitative research focused on the experiences of patients, carers/family and staff of interventions received. Quality appraisal was undertaken using the Effective Public Health Practice Project Quality Assessment Tool or an adapted version of the Wallace checklist. We used random-effects meta-analysis to synthesise quantitative data where appropriate, meta-ethnography for qualitative studies and qualitative comparative analysis for the overarching synthesis. Quantitative review: Included 125 papers. Forty-nine studies met criteria for further synthesis. Enhanced recovery protocols resulted in improvements to length of stay, without detriment to other outcomes, with minimal improvement in patient-reported outcome measures for patients admitted for lower-limb or colorectal surgery. Qualitative review: Included 43 papers, 35 of which were prioritised for synthesis. We identified six themes: 'Home as preferred environment for recovery', 'Feeling safe', 'Individualisation of structured programme', 'Taking responsibility', 'Essential care at home' and 'Outcomes'. Overarching synthesis: Intervention components which trigger successful interventions represent individualised approaches that allow patients to understand their treatment, ask questions and build supportive relationships and strategies to help patients monitor their progress and challenge themselves through early mobilisation. Interventions to reduce hospital length of stay for older adults following planned surgery are effective, without detriment to other patient outcomes. Findings highlight the need to reconsider how to evaluate patient recovery from the perspective of the patient. Trials did not routinely evaluate patient mid- to long-term outcomes. Furthermore, when they did evaluate patient outcomes, reporting is often incomplete or conducted using a narrow range of patient-reported outcome measures or limited through asking the wrong people the wrong questions, with lack of longer-term evaluation. Findings from the qualitative and overarching synthesis will inform policy-making regarding commissioning and delivering services to support patients, carers and families before, during and after planned admission to hospital. This trial is registered as PROSPERO registration number CRD42021230620. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 130576) and is published in full in Health and Social Care Delivery Research; Vol. 11, No. 23. See the NIHR Funding and Awards website for further award information.

Challenges of “Young Carer Support” in Japan and Role of Community-based Integrated Support Centers

Challenges of “Young Carer Support” in Japan and Role of Community-based Integrated Support Centers

Mental health and wellbeing interventions for care-experienced children and young people: Systematic review and synthesis of process evaluations

BackgroundThe mental health and well-being of care-experienced children and young people remains a concern. Despite a range of interventions, the existing evidence base is limited in scope, with a reliance on standalone outcome evaluations which limits understanding of how contextual factors influence implementation and acceptability. The Care-experienced cHildren and young people’s Interventions to improve Mental health and wEll-being outcomes Systematic review (CHIMES) aimed to synthesise evidence of intervention theory, outcome, process and economic effectiveness. This paper reports the process evaluation synthesis, exploring how system factors facilitate and inhibit implementation and acceptability of mental health and wellbeing interventions for care-experienced children and young people. MethodsSixteen databases and 22 websites were searched between 2020 and 2022 for studies published from 1990 and May 2022. This was supplemented with contacting experts in the field, citation tracking, screening of relevant systematic reviews and stakeholder consultations. We drew on framework synthesis of qualitative data and incorporated a systems lens, taking account of contextual influences across socio-ecological domains. Quality appraisal assessed reliability and usefulness. Confidence in synthesised findings was assessed with the GRADE-CERQual tool. We report the review in accordance with relevant elements of both the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA), and the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) checklist. ResultsSearches retrieved 15,068 unique study reports, and 23 of these were eligible for process evaluation synthesis, reporting on sixteen interventions. Studies were published between 2003 and 2021. Nine interventions were from the UK and Ireland, six interventions were from the USA, and one was from Australia. They were largely classified as interpersonal, where the aim was to modify carer-child relationships. Five key context factors were identified that supported and prohibited intervention delivery: (1) lack of system resources; (2) intervention burden, which encompasses the time, cognitive, and emotional burden associated with implementation and participation; (3) interprofessional relationships between health and social care professionals; (4) care-experienced young people’s identity; and (5) carer identity. ConclusionWe identified several supportive and restrictive factors across social and health care systems that may impact intervention implementation and acceptability. Key implications include: the importance of involving diverse stakeholders in intervention development and delivery; the need to better resource and support those involved in interventions, particularly training and support for carers; and ensuring future evaluations integrate process evaluations in order to optimise interventions.

What impact does informal caring have on Mental Wellbeing? A cross-sectional analysis of survey data

Abstract Background It is estimated that 1 in 8 of the English &amp; Welsh population are unpaid informal carers. There is an upward trend in the number of carers in a growing and ageing population. This study aimed to quantify the mental wellbeing of informal carers as compared to the English general population. Methods The study drew from secondary analysis of the Health Survey for England, including 10,300 participants of all ages. The outcome measure was the Warwick Edinburgh mental wellbeing scale (WEMWBS) a 14-item validated survey which measures subjective well-being and psychological function with higher scores denoting greater wellbeing. Derived caring status, age &amp; sex were explanatory variables. Multiple linear regression was employed to estimate associations. Results Of the 7,297 eligible adult participants, 1,244 were carers. The adjusted mean difference in WEMBS for men compared to women was 0.53 (0.10 to 0.96, P = 0.016). When including caring status, the mean difference for carers compared to non-carers was -1.71 (-2.29 to -1.13, p &amp;lt; 0.001) adjusted for age and sex. In sub groups of age, (&amp;lt;25, 25-64, and &amp;gt;65) there was evidence that caring was associated with lower wellbeing for ages &amp;lt;64 but no evidence of difference in &amp;gt; 65 years. Conclusions There is compelling evidence that informal carers have a lower WEMWBS score, indicating poorer mental wellbeing. However, this does impact all age groups equally as there was only evidence of carers &amp;lt;64 having a lower WEMWBS. This is one of the first studies to quantify the mental wellbeing of carers, and could lead to further studies to identify a causal link, and better support carers. Key messages • Informal unpaid carers &amp;lt;64 years, have quantifiably reduced mental wellbeing, compared to the wider population. Further research is needed to reduce the disparity. • In an ageing population, and with increasing numbers of people informally caring, policy should support them in caring, and to also improve their own health.

A comparison of four dementia palliative care services using the RE-AIM framework

BackgroundLiving with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned.MethodsA long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services.ResultsThe four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place.ConclusionsAn effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.

Putting Compassion Back into Care

Public services are stressed by soaring demand, inadequate capacity, staff burnout and low morale with strikes reflecting profound unhappiness. With so many difficulties, the fundamental need for compassion in public services has been eroded, with adverse consequences for patients and their families or carers. The need for compassion is not only an individual’s humanitarian and professional responsibility but one that should be given high priority by organisations, educational institutions, and professional bodies. The care of patients with dementia and support for families or carers provides a perfect example of such disparities and their devastating impact. The implications for families affected by dementia in minority ethnic or marginalised communities are considered alongside the need for a ‘paradigm shift’ to patient-centred, ‘needs-based’ services to improve outcomes. This article explores and attempts to extrapolate the relevance of personal experience to those in minority ethnic or marginalised communities on whom there is limited information and those who have little voice or advocacy.1 There is a distinct role for charitable and third-sector organisations with a deeper understanding of the cultural context to demonstrate leadership in moving policy and resources to address such societal and service disparities.

Supporting patients by family education in psychotic illness: a longitudinal pre–post study protocol

IntroductionA lack of education, resources and support for family carers of young adults with psychotic illnesses leaves them ill-equipped to support their loved one. By equipping families with skills and...

Involving carer advisors in evidence synthesis to improve carers' mental health during end-of-life home care: co-production during COVID-19 remote working.

Family carers play a central role in supporting people at the end of life, but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers' mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel to help ensure the findings made sense and were communicated meaningfully from the carers' perspective. To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel. Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid 'groundwork' was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers' agendas, enabling 'space to talk' and 'space to change' appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained. The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel. Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise. Challenges were that the COVID-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels. The patient and public involvement principles employed, including meeting composition and chairing, and flexibility to follow carers' agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated, as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible patient and public involvement funding models. This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Barriers and enablers influencing female athlete return-to-sport postpartum: a scoping review

ObjectiveMotherhood within sport has become more common with many female athletes seeking to return-to-sport (RTS) postpartum; yet few sport organisations possess policies that support female athletes to RTS postpartum. Our...

Rehabilitation needs of people with brain tumours in Ireland: Protocol for a prospective, mixed methods action research study ("Brain-RESTORE").

Background: Approximately 480 people annually in Ireland are diagnosed with a primary brain tumour. Brain tumours are a heterogeneous group of conditions, varying in histopathology, location, and progression. A consistent feature is neurological impairment, which can lead to profound effects on physical and cognitive function. There is evidence that people with brain tumours can benefit from rehabilitation, but pathways are poorly described, and no best practice is defined. This leads to significant unmet need. The aim of this study is to understand the rehabilitation needs of people diagnosed with a brain tumour in Ireland, and gain insight to inform policy and practice. Methods: A prospective, mixed methods study with embedded action research will be conducted. Patients (n=122) with a new diagnosis of primary brain tumour, and optionally, a nominated carer or family member, will be recruited through a national neuro-oncology service. Rehabilitation need (Mayo-Portland Adaptability Inventory), quality of life (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Brain Cancer Module, EuroQol-5D-5L), healthcare utilisation and, optionally, carer needs (Carer Support Needs Assessment Tool) will be assessed at four, eight and 12 months post diagnosis. An embedded qualitative study will invite 30 patients and carers to a semi-structured interview to explore their lived experience of rehabilitation needs and services following brain tumour diagnosis. Finally, using an Action Research approach, healthcare professionals involved in caring for people with brain tumours will be invited to participate in co-operative inquiry groups, to reflect on emerging aggregate findings and identify actions that could be undertaken while the study is underway. Conclusions: By understanding rehabilitation need, the findings will help healthcare professionals and health service providers understand how to prioritise the supports required and encourage policy makers to adequately resource neurorehabilitation to meet the needs of people with a brain tumour diagnosis.