Carer Support Research Articles

Patterns in health care use and intensity for diagnosed and undiagnosed cognitive impairment in the older australian community: Implications for primary care management

ObjectivesWhile the economic burden imposed by dementia is well-documented, findings are mixed on health care use for those with mild cognitive impairment (MCI). Our objective was to analyse annual, non-hospital medical and pharmaceutical use patterns for older people with undiagnosed MCI and diagnosed dementia, living in the Australian community. MethodsWe analysed panel data from a community sample, the Sydney Memory and Ageing Study (Australia), linked to administrative data on health care use, using two-part models to estimate the probability of using health care and the annual costs incurred by study participants. ResultsPeople with MCI, unaware of their diagnoses, were significantly less likely to incur annual pathology and diagnostic imaging costs relative to cognitively normal individuals. This effect was concentrated in individuals with MCI who had non-amnestic symptoms, lived alone, or had limited carer support. Compared to cognitively normal individuals, people with MCI were predicted to have slightly lower annual costs for broad medical care categories related to the management and diagnosis of cognitive impairment, and people with dementia, substantially higher professional attendances, and pharmaceutical costs. These findings were consistent across estimation models adjusting for attrition over the study. Policy implicationsDiagnosis and symptom management in primary care may enable individuals with MCI to improve their quality of life and prevent more costly future health care use. However, our study found potential gaps in medical service use for people with undiagnosed MCI in the community, especially when they had less support or did not have memory symptoms. Primary care services may need to better diagnose and target these individuals.

가족돌봄청소년을 위한 지원 프로그램 연구

This study proposes basic data for preparing programs for each area so that thenewly launched support for young carers can be comprehensively prepared, including theirfuture preparation, beyond supporting care-oriented households. This study is based on theChild Welfare Act, the Basic Act on Youth, and the Basic Act on Young Adult, and refers tooverseas cases and targets “young carers under the age of 34” so that young carers canreceive individualized and effective service support under the basis of early investment theoryand preventive welfare policy. It is argued that it will lay the foundation for various policiessuch as raising public awareness, building a network of young carers, emotional support, capacity building, and employment. To this end, first, preventive interventions thatcan reduce the number of young carers are studied; second, focusing on allowing society totake care of young carers before they develop dysfunction by discriminating them morepreferentially; and third, raising awareness of society as a whole for young carers; fourth,strengthening social capital; fifth, it proposed a special Korean-style program for young carersthat can add joy and immersion along with welfare services.

Quality of life outcomes for informal carers of long-term care service users in Austria, England and Finland

PurposeThe provision and funding of long-term care (LTC) for older people varies between European countries. Despite differences, there is limited information about the comparative performance of LTC systems in Europe. In this study, we compared quality of life (QoL) of informal carers of home care service users in Austria, England and Finland.MethodsInformal carers were surveyed in Austria, England and Finland. The study data (n = 835) contained information on social care-related quality of life (SCRQoL) associated with the ASCOT-Carer measure, and characteristics of carers and care recipients from each country. We applied risk-adjustment methods using a fractional regression model to produce risk-adjusted SCRQoL scores for the comparative analysis. In a sensitivity analysis, we applied multiple imputation to missing data to validate our findings.ResultsWe found that the mean values of the risk-adjusted SCRQoL of informal carers in England were 1.4–2.9% and 0.3–0.5% higher than in Finland and Austria, and the mean values of the risk-adjusted SCRQoL of carers in Austria were 0.8–2.7% higher than in Finland. Differences in the mean values of the country-specific risk-adjusted SCRQoL scores were small and statistically non-significant. English informal carers were less healthy and co-resided with care resipients more often than carers in Austria or Finland.ConclusionSmall differences between the risk-adjusted SCRQoL scores between Austria, England and Finland are consistent with the observation that the countries provide different types of support for informal carers. Our results help local and national decision-makers in these countries to benchmark their informal care support systems.

Failed implementation of a nursing intervention to support family caregivers: An evaluation study using Normalization Process Theory.

To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT). An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes. Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its 'normalization', consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring. Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice. Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages. Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload. Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation. Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention. Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study. What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care. What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment. Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders. This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR). There was no patient or public involved. The trial was prospectively registered on the Dutch Trial Register (NL7702).

Basic Conditions for Support of Young Carers in School: A Secondary Analysis of the Perspectives of Young Carers, Parents, Teachers, and Counselors.

Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student's school environment and explores how schools can develop comprehensive, sustainable support systems for young carers-systems that consider and involve as many actors as possible in the student's school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and "invisible" young carers, as well as other students.

Crisis Rescue Foundation Vaxi Taxi/health and wellbeing pop-ups project.

Established by Crisis Rescue Foundation in 2021 to support the missing and vulnerable to access health and wellbeing help. Address health and wellbeing needs of people experiencing barriers to accessing NHS and allied care by delivering pop-ups in the hearts of communities, outside GP surgery and hospital walls, in a warm, inclusive environment. Forty pop-ups so far across London delivering bespoke, individualised health information and signposting, joining up NHS, allied and local community services at key sites, including asylum seeker/homeless/faith/refugee/drug and alcohol support/food bank/sex worker support/youth club and education centres. A 'Medical Glastonbury' with background music, plus free food, toiletry goodie bags and clothes. Drug and alcohol/heart/oral/foot/sexual and mental health; support for carers; BLS; violence reduction; youth mentoring; housing; vaccination; wellbeing and more, information and signposting offered to local people by professionals, supporting and empowering people to access trusted guidance and care. Cardio and mental health check cards to record health information and guide next steps in appropriate care. Around 2000 Londoners were given health and wellbeing information. 80% of service users were from ethnic minority backgrounds. Over 99% of service users rated pop-ups highly. Over 1/3 had raised BP and nearly 2/3 had raised BMI detected and the individuals were signposted to appropriate information and care. Effective, bespoke and personalised information, and signposting to support were well-received at the pop-ups. Professionals working with service users experiencing inequalities of allied and local voluntary organisations to enhance equity by addressing the unmet health and wellbeing needs of the missing and the vulnerable.

Carer Engagement and Support in North and West Kent Rehabilitation Services

Carer Engagement and Support in North and West Kent Rehabilitation Services

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

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. This study aims to identify how informal carers, usually friends or family who provide unpaid assistance, support patients and clinicians during video consultations. 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. 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. 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.

Support to ‘non-clients’: care managers’ role in direct and indirect carer support

ABSTRACT Social service provision in Europe has increasingly incorporated informal carers. Consequently, these carers are now included within the scope of all social workers, including care managers. Most support for carers is indirect support, where opportunities for respite are channelled through the care receiver’s needs assessment. This approach highlights the unique role of care managers providing carer support as they balance their public task directed towards clients with the concurrent policy-driven expectation to support carers. The aim of this article is to explore how care managers, as street-level bureaucrats, ‘make’ carer support policy on the ground. Using systematic text condensation of 10 qualitative interviews with care managers in Sweden, we present three themes to understand care managers’ experiences. Care managers work ‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outside one’s scope of work, and there are possibilities and practices towards a carer perspective. Following Lipsky’s dictum that street-level bureaucrats’ actions effectively ‘become’ the public policy they carry out, our results highlight care managers’ possibilities and challenges in shaping what direct and indirect carer support looks like on the ground.

Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology

Objective To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease. Methods Seventy-five carers from the UK and USA participated in this cross-sectional study, between July 2021 and February 2023. Participants completed assessments on: anticipatory grief (MMCGI-SF, comprising three sub-scales: Personal Sacrifice Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation); person with MND (pwMND) behavioral changes (MiND-B) and disease severity (ALSFRS-R); carer-pwMND emotional bond (Relationship Closeness Scale), familism levels (Familism Scale), and reported hours of care provided. Multiple linear regression analyses were conducted to explore factors impacting carer AG. Results AG total scores showed that 50.7% of carers were experiencing common grieving reactions, 22.6% presented intense grieving emotions, and 26.7% presented low grieving responses. Disease severity (regression coefficient, β = −0.31, p = 0.01, 95%CI −0.91 to −0.13) and behavioral changes (β = −0.34, p = 0.002, 95%CI −1.45 to −0.33) predicted AG total scores (proportion of explained variation, R 2=0.38, p < 0.001). Regarding AG subscales, Personal Sacrifice Burden (R 2=0.43, p < 0.001) was predicted by disease severity (β = −0.39, p < 0.001, 95%CI −0.42 to −0.11). Behavioral changes predicted Heartfelt Sadness and Longing (β = −0.27, p = 0.03, 95%CI −0.49 to −0.03; R 2 = 0.21, p = 0.01) and Worry and Felt Isolation (β = −0.42, p < 0.001, 95%CI −0.63 to −0.20; R 2=0.33, p < 0.001). Conclusion This study suggests that disease-related factors may be the strongest predictors of carer AG. Interventions addressing carers’ understanding and management of MND symptoms seem crucial to support their experiences of loss and their acceptance of MND. Evidence-based support for carers in MND services is required.

The Physical Health Nurse Consultant: Perceptions and Experiences of Those Who Care for People with Mental Illness

Mental health carers are crucial in improving the physical health outcomes of people diagnosed with a mental illness (hereafter referred to as consumers). The long-term and multifaceted mental and physical health support carers provide to consumers can contribute to caregiver burden. Consequently, carers advocate for coordinated and integrated physical healthcare to improve the physical health outcomes of consumers and alleviate caregiver burden. The aim of this qualitative exploratory study is to explore carers’ perceptions and experiences with the Physical Health Nurse Consultant role. Semi-structured interviews with nine carers nominated by consumers were conducted. Interviews were transcribed and reflexively thematically analysed. Three main themes were identified: (i) Therapeutic relationship s were a catalyst for health behaviour change; (ii) Overt and covert positive changes were observed by carer and (iii) Cares’ involvement in integrated mental health and physical health care. Nine carers who were nominated by consumers to be involved in their physical healthcare planning, preferred to adopt a supporting role as this prevented or reduced caregiver burden. The findings support the adoption and continuation of the Physical Health Nurse Consultant role to facilitate positive physical health outcomes for consumers and a reduction in caregiving burden. The benefits of the Physical Health Nurse Consultant provide a compelling argument to embed the role in routine practice. Mental healthcare services should advocate for continued funding and career development for such positions to provide long term benefits for consumers and carers. Future research is required to explore carer and consumer involvement in co-producing future and localised iterations of the Physical Health Nurse Consultant role. This research should also measure the outputs and outcomes of co-production to clarify how the process worked in practice.

Implementation of guidelines on Family Involvement for persons with Psychotic disorders: a pragmatic cluster randomized trial. Effect on relatives’ outcomes and family interventions received

BackgroundFamily interventions (FI) are recommended as part of the treatment for psychotic disorders, but the implementation in mental health services is generally poor. Recently, The Implementation of guidelines on Family Involvement for persons with Psychotic disorders (IFIP) trial, demonstrated significant improvements in implementation outcomes at cluster-level. This sub-study aims to examine the effectiveness of the IFIP intervention on relatives’ outcomes and received FI.MethodsA cluster randomized controlled trial, was conducted in 15 Norwegian Community Mental Health Center (CMHC) units that were randomized to either the IFIP intervention, including implementation interventions and clinical interventions, or treatment as usual (TAU). The clinical interventions consisted of FI: basic family involvement and support (BFIS) to all patients and family psychoeducation (FPE) to as many as possible. Patients with psychotic disorders and their closest relative were invited to fill in questionnaires at inclusion and 6 months and 12 months follow-up. Received FI was reported by both relatives and clinicians. The relatives’ primary outcome was satisfaction with health service support, measured by the Carer well-being and support questionnaire part B (CWS-B). The relatives’ secondary outcomes were caregiver experiences, expressed emotions and quality of life. Patients’ outcomes will be reported elsewhere.ResultsIn total 231 patient/relative pairs from the CMHC units were included (135 intervention; 96 control).The relatives in the intervention arm received an increased level of BFIS (p=.007) and FPE (p &amp;lt; 0.05) compared to the relatives in the control arm, including involvement in crisis planning. The primary outcome for relatives’ satisfaction with health service support, showed a non-significant improvement (Cohen’s d = 0.22, p = 0.08). Relatives experienced a significant reduced level of patient dependency (Cohen’s d = -0.23, p = 0.03).ConclusionThe increased support from clinicians throughout FI reduced the relatives’ perceived level of patient dependency, and may have relieved the experience of responsibility and caregiver burden. The COVID-19 pandemic and the complex and pioneering study design have weakened the effectiveness of the IFIP intervention, underscoring possible potentials for further improvement in relatives’ outcomes.Clinical Trial RegistrationClinicalTrials.gov, identifier NCT03869177.

Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation

Objective MiNDToolkit is a novel psychoeducational intervention for carers to support management of behavioral symptoms in people living with motor neuron disease (PlwMND). Implementation of MiNDToolkit involves delivery of an online intervention to carers, which is reinforced by trained healthcare professionals (HCPs). Methods A mixed-methods process evaluation of the MiNDToolkit feasibility trial was conducted, focusing on reinforcement of the intervention by HCPs. Quantitative data, descriptively analyzed, were included from platform analytics, questionnaire, and 10 semi-structured interviews with HCPs. Interviews were transcribed verbatim; data were inductively analyzed using Reflective Thematic Analysis. Results The MiNDToolkit training and platform is a beneficial and acceptable resource for HCPs with potential to increase knowledge and confidence in identifying and managing behavioral symptoms in MND. Implementation barriers included HCPs’ perceptions that highlighting behavior changes would be burdensome to carers and assumptions that carers would take the initiative to ask for support from clinicians. Degree of intervention reinforcement varied, with most HCPs delegating intervention delivery solely to the online platform. Conclusions Implementation of the MiNDToolkit was viewed to be feasible and the platform thought to increase accessibility of support to carers. The flexible approach to delivery (online platform and optional HCP reinforcement) is acceptable as an intervention for supporting carers of PlwMND with behavioral symptoms. However, MiNDToolkit should not negate HCP involvement in providing medical and practical information to PlwMND and families. Future research should explore ways to incorporate support for carers in the management of PlwMND alongside standard care, alongside tools such as the MiNDToolkit.

Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research

&lt;b&gt;Background&lt;/b&gt; Home is the preferred place of care and death for most people with advanced illness. &lt;b&gt;Aim&lt;/b&gt; To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. &lt;b&gt;Design and Setting&lt;/b&gt; A scoping literature review in accordance with the PRISMA-ScR guideline. &lt;b&gt;Method&lt;/b&gt; The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. &lt;b&gt;Results&lt;/b&gt; In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. &lt;b&gt;Conclusion&lt;/b&gt; There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.

Exploring different stroke populations’ information needs: a cross-sectional study in England

BackgroundWhile tailored information might have the potential to motivate stroke survivors to make essential lifestyle changes and improve long-term outcomes, how this varies among different stroke populations is not yet fully understood.MethodFrom November 2022 to May 2023, stroke survivors in the UK, who were clinically stable, participated in a community-based, descriptive cross-sectional study. Participants rated several information themes on a Likert scale from one to five, indicating the relevance of each information group to them. Data were analysed using Wilcoxon and chi-squared tests on SPSS. Descriptive statistics were employed for examining the preferred information delivery method, timing, personnel, and frequency.ResultsSeventy survivors, with an average age of 67 ± 19 (61% males), were recruited. Survivors emphasised the importance of symptoms, risk factors, and recovery information during hospital stay, while medication and lifestyle change information were more significant in the community. Subgroup analysis revealed distinct patterns: First-time stroke survivors highlighted the importance of social and financial support (acute phase median Likert score 3, chronic phase median Likert score 4; p < 0.01), while those with prior strokes emphasised information on driving and working after stroke (acute phase median Likert score 4, chronic phase median Likert score 3; p < 0.05). Survivors recruited after six months of stroke prioritised knowledge of carer support in the community (acute phase median Likert score 3.5, chronic phase median Likert score 4; p < 0.01).ConclusionSurvivors’ information needs differ depending on factors such as the recovery phase, type of stroke, time since diagnosis, and the presence of a previous stroke. Considering these factors is essential when developing or providing information to stroke survivors.

Advance Care Planning for Children With Rare Diseases: A Pilot RCT.

Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life. A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up. Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 1:1 randomization: 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI]: 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI: 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI: 1.62-7.94), more caregiver strain (1.2, P = .006, CI: 1.07-1.42); and less family well-being (0.8, P = .02, CI: 0.64-0.95). FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability.

How carers' needs can be met by staff within inpatient settings: a qualitative study

Background/Aims Inpatient admissions can increase carer stress rather than provide respite. The aim of this study was to gain carers' perspectives about how their needs can be met during an inpatient admission. Methods Semi-structured interviews were conducted with 12 carers whose relatives had been admitted to inpatient care at least once. Interviews were analysed thematically. Results Carers described a fear of relinquishing responsibility for care, which was exacerbated by concerns about the quality of care provided by staff. Better experiences were possible when carers were given information, ranging from generic information about symptoms or how the mental health system works, information about patients' needs and carer support systems. Conclusions Communication is key and needs to be a two-way process, with carers and staff learning from each other to support patients. Implications for practice Inpatient staff need training in carer involvement, including ways of engaging carers when patients do not give consent to information sharing.

'Caring beyond capacity' during the coronavirus pandemic: resilience and family carers of people with dementia from the IDEAL cohort.

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study was to explore seven family carers' accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and 'caring beyond capacity' due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

Unmet needs for information and support of cancer patients and carers: a structured questionnaire study

We examine the unmet needs for information and support of cancer patients and carers. A questionnaire study was performed among patients (n = 135) and carers (n = 73) at Kuopio University Hospital, Finland. Data are analysed using SPSS 27 by t-test, cross-tabulation and cluster and variance analyses. Patients and carers received less support than information. Older and less-educated individuals and males had more unmet needs. Carers received less information and support than patients. Carers expressed unmet needs particularly when they had limited opportunities to discuss with healthcare professionals. Individual needs of patients and carers should be addressed throughout the cancer care pathway.

The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial

BackgroundInformal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs’ well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs’ health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient’s health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients’ symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only.Methods and analysisIn this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance.DiscussionIf proven effective, Carer eSupport has the potential to significantly improve ICs’ preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing.Trial registrationClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).