Carers Research Articles

Determinants of hospital readmissions in older people with dementia: a narrative review

IntroductionOver 50% of hospitalised older people with dementia have multimorbidity, and are at an increased risk of hospital readmissions within 30 days of their discharge. Between 20-40% of these readmissions may be preventable. Current research focuses on the physical causes of hospital readmissions. However, older people with dementia have additional psychosocial factors that are likely to increase their risk of readmissions. This narrative review aimed to identify psychosocial determinants of hospital readmissions, within the context of known physical factors.MethodsElectronic databases MEDLINE, EMBASE, CINAHL and PsychInfo were searched from inception until July 2022 and followed up in February 2024. Quantitative and qualitative studies in English including adults aged 65 years and over with dementia, their care workers and informal carers were considered if they investigated hospital readmissions. An inductive approach was adopted to map the determinants of readmissions. Identified themes were described as narrative categories.ResultsSeventeen studies including 7,194,878 participants met our inclusion criteria from a total of 6369 articles. Sixteen quantitative studies included observational cohort and randomised controlled trial designs, and one study was qualitative. Ten studies were based in the USA, and one study each from Taiwan, Australia, Canada, Sweden, Japan, Denmark, and The Netherlands. Large hospital and insurance records provided data on over 2 million patients in one American study. Physical determinants included reduced mobility and accumulation of long-term conditions. Psychosocial determinants included inadequate hospital discharge planning, limited interdisciplinary collaboration, socioeconomic inequalities among ethnic minorities, and behavioural and psychological symptoms. Other important psychosocial factors such as loneliness, poverty and mental well-being, were not included in the studies.ConclusionPoorly defined roles and responsibilities of health and social care professionals and poor communication during care transitions, increase the risk of readmission in older people with dementia. These identified psychosocial determinants are likely to significantly contribute to readmissions. However, future research should focus on the understanding of the interaction between a host of psychosocial and physical determinants, and multidisciplinary interventions across care settings to reduce hospital readmissions.

Intervention for an Australian carer of a person with dementia: A single case study

Caring for a person with dementia can negatively impact the physical, mental, and social wellbeing of an informal carer. Providing complex and challenging care often results in carer burden, stress, and distress, which can continue even when the care recipient transitions into an aged care facility. This case study aims to demonstrate that optimising carer support, knowledge, skill acquisition, and promotion of wellbeing benefits carers and those they care for across contexts. It provides a weekly account of an informal Australian carer’s experience with the STrAtegies for RelaTives (START) manualised intervention program. The study used reliable change indices, standardised measures, and carer surveys to provide insights into the carer’s experience of the program and outcomes during and after the therapy. The results showed reliable and clinically significant change, demonstrating an improvement in all measures. The carer’s mood symptoms and their perceived burden of care decreased. The carer also reported decreased dementia symptoms in their care recipient. Both the carer and the care recipient experienced increased quality of life. These findings are consistent with recent literature on the feasibility of the START program and are aligned with the National Dementia Plan.

Patients with mesothelioma and their carer's experience of diet and appetite: A qualitative insight from the Help-Meso Study.

People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient-related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers. Twenty-three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56-83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied. Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice. Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family.

The Impact of Informal Care on Healthcare Utilization of Older Adults with Functional Limitations in China

ABSTRACT Our study examines the impact of informal care on healthcare utilization, focusing on caregiver types, urban-rural, and gender differences. Analyzing data from the China Health and Retirement Longitudinal Study and using fixed effects models, we discovered complementary effects between informal care and healthcare. Specifically, spousal care increased inpatient care use, adult child care boosted both inpatient and outpatient use, and dual care from children and spouses showed the most significant impact on healthcare use. The association between informal care and healthcare use varied across gender or urban-rural residence. Our findings highlight the importance of caregivers in accessing healthcare services.

Challenges, opportunities, and priorities for tier-1 emergency medical services (EMS) development in low- and middle-income countries: A modified Delphi-based consensus study among the global prehospital consortium

IntroductionThough the disease burden addressable by prehospital and out-of-hospital emergency care(OHEC) spans communicable diseases, maternal conditions, chronic conditions and injury, the single largest disability-adjusted life year burden contributor is injury, primarily driven by road traffic injuries(RTIs). Establishing OHEC for RTIs and other common emergencies in low- and middle-income countries(LMICs) where the injury burden is disproportionately greatest is a logical first step toward more comprehensive emergency medical services(EMS). However, with limited efforts to formalize and expand existing informal bystander care networks, there is a lack of consensus on how to develop and maintain bystander-driven Tier-1 EMS systems in LMICs. Resultantly, Tier-1 EMS development is fragmented among non-governmental organizations and the public sector globally. MethodsA steering committee coordinated a 9-round, modified Delphi-based expert discussion to identify current challenges, opportunities, and priorities in Tier-1 EMS development globally. 11 panelists represented seven Global Prehospital Consortium(GPC) member organizations with a mean 9.57 years of organizational Tier-1 EMS development/implementation experience(median = 9 years). The consortium represents the largest collaboration between organizations directing Tier-1 EMS programs globally across 12 countries on 3 continents(Americas, sub-Saharan Africa, and South Asia) with 22,000 first responders. ResultsThe GPC identified seven priority areas for Tier-1 EMS development: infrastructure/operations, communication, education/training, impact evaluation, financing, governance/legal, and transportation/equipment. A high level of consensus exists regarding priorities for investigation, including Tier-1 responder density/distribution, Tier-1 patient data variable standardization for trauma registries/quality improvement, dispatch technologies/protocols, modular curricula, broader cost-effectiveness and impact evaluation indices capturing secondary impacts of EMS, standardizing legal protections for first responders, and transportation/equipment standards. DiscussionConsensus is necessary to avoid duplicative and disorganized efforts due to the fragmented nature of parallel Tier-1 EMS efforts globally. A Delphi-like multi-round expert discussion among the members of the largest collaboration between organizations directing Tier-1 EMS programs globally generated relevant priorities to direct future efforts.

Loneliness in Pregnancy and Parenthood: Impacts, Outcomes, and Costs.

Background: Becoming a parent has been highlighted as a period associated with increased risks for loneliness, with around one-third of parents reporting feeling lonely often or always. However, as most understanding of loneliness is based on elderly or student cohorts, further insights into the costs of parental loneliness is needed. Method: We conducted a literature review of impacts of loneliness in pregnancy and parenthood and present a synthesis of the health, social, societal, and economic costs. We draw on evidence about impacts and costs of loneliness in other cohorts to help provide a wider context to understand the impacts and costs and how parental loneliness differs from other populations. Results: Similar to literature with elderly cohorts, parental loneliness has impacts on health and wellbeing, such as depression in new parents and increased general practitioner (GP) visits in pregnancy. But also has intergenerational impacts via its association with poor mental health and social competence and increased respiratory tract infections in the child. Physical health impacts widely associated with loneliness in other cohorts have yet to be examined in parents. Loneliness in parents is likely to result in social withdrawal further isolating parents and wider societal and economic costs relating to absence from employment and informal caring roles. Conclusion: Parental loneliness has the potential for negative and pervasive impacts. As parental loneliness has wide ranging and intergenerational impacts it is important that a multi-sectoral perspective is used when examining its costs.

Is the association between long-term care and subjective well-being socio-economically stratified? Evidence from Europe

ABSTRACT Informal and formal care receipt can affect the overall subjective well-being of care recipients. While much attention has been devoted to the mechanisms by which care use relates to subsequent well-being, no previous research has examined socio-economic stratification in this association. This question is important given that the proportion of disabled older adults relying exclusively on informal caregivers is expected to rise, especially among lower socio-economic status (SES) groups. This study examines SES gradients in the associations of informal and formal care use with subjective well-being, and across four care contexts (Northern, Western, Southern and Eastern Europe) using data on functionally impaired Europeans aged 50 + from the Survey of Health, Ageing & Retirement in Europe (n = 6,012). We investigate how wealth and education moderate the associations between take-up of informal and formal care and changes in subjective well-being (i.e. quality of life and depressive symptoms). We also investigate whether this relationship differs by care context. We find little evidence of SES differences in the association between the onset of care and subjective well-being regardless of the care context. We interpret our findings in light of previous theory and derive implications for future research on the relationship between care receipt and well-being.

The association between loneliness with health service use and quality of life among informal carers in Australia

ObjectiveThe demanding nature of caregiving and limited social support can lead to informal carers experiencing loneliness, which can impact their well-being and overall health service use (HSU). The study aims to examine the association between loneliness with HSU and Health state utility values among informal carers in Australia. MethodsData were derived from three waves (2009, 2013, and 2017) of the nationally representative longitudinal Household Income and Labour Dynamics of Australia (HILDA) survey, focusing on adult informal carers. Outcome measures included visits to the General Practitioner, the number of hospital admissions, and the SF-6D score. Generalized Estimating Equations (GEE) analysis was conducted to explore the associations between loneliness and HSU, as well as loneliness and utility values (based on SF-6D) while adjusting for age, sex, education, marital status, income, and physical/mental health conditions. ResultsAfter controlling for covariates, lonely carers reported lower utility values (IRR = 0.91, 95%CI [0.89, 0.93], p < 0.001) compared to non-lonely carers. Lonely carers reported a higher number of GP visits (IRR = 1.18, 95% CI [1.04, 1.36], p < 0.05) as well as a higher likelihood of visiting specialists (AOR = 1.31, p = 0.046) and hospital doctors (AOR = 1.42, p = 0.013) compared to the non-lonely carers. ConclusionsThe findings of this study highlight the relationship between loneliness on both healthcare utilization and carers’ overall well-being. Addressing loneliness through targeted interventions and social support systems can help improve health outcomes and potentially reduce the overall healthcare costs among informal carers in Australia.

Informal care time and costs of dementia care in Benin (West Africa).

Dementia is a growing global health challenge, with significant socioeconomic implications. This study examined the informal care duration and related costs along with the total cost of care for older individuals with dementia in Benin, West Africa, providing insights into a region with limited dementia research. We conducted a cost-of-illness study in Benin. Both hospital and community recruitments were used to enroll adults aged ≥ 60 years and their primary caregivers. Structured questionnaire and validated tools were used to collect the demographic, clinical, healthcare resource utilization data as well as informal care duration. Replacement costs approach was performed to valuate informal care time. Official exchange rates from the World Bank were used to convert costs from local currency to purchasing power parities dollars (PPP$). Data from 135 individuals with varying dementia stages revealed that dementia places substantial caregiving demands, predominantly on women who provide up to eight hours of daily care. In 2021, the mean annual cost of dementia care was estimated to be PPP$2,399.66 ± 2,057.07. Informal care represented a significant portion of dementia expenses, up to 92% of the total care costs in this study. Policy interventions are urgently needed to address the dementia-care challenges in Benin, especially because economic transitions and educational advancements may reduce the availability of informal caregivers. This emphasizes the vital role of informal caregivers and underscores the need of implementing dementia policies to support families facing the evolving challenges of dementia care.

The Rhetoric and Reality of Choice and Autonomy When Older People Are Discharged from Community Hospital at the End-of-Life in England: A Constructivist Grounded Theory Study

There has been an increasing acknowledgement in the UK of the importance of recognising frailty as a condition that leaves older people vulnerable to dramatic, sudden changes in health triggered by seemingly small events. In policy, the approach to managing frailty is often an emphasis on staying well with limited consideration to frailty as an end-of-life phase. Meanwhile, discharge from hospital continues to be complex. Overstretched acute hospitals are juxtaposed with community and social services that struggle to keep up with the demand of those being discharged and the labelling of older people as “bed blockers” at the centre of delayed discharges. This paper reports a study underpinned by constructivist grounded theory methodology, with the aim of exploring the experiences and perceptions of stakeholders. Semistructured interviews were conducted with 57 participants including patients, their informal carer(s), community hospital staff, community health professionals, and care home managers. The core category of “the drive to discharge conveyor belt” was derived from data analysis. A significant finding of this study was that of the carer, their burden, and their intrinsic role in facilitating discharge, filling in gaps in services, coordinating services, and enabling the patient to stay at home, with little consideration of their choices or autonomy. The “drive to discharge” impacts older people, their informal carers, and health professional. This study suggests how they may be supported, through an ethical lens.

Informal Family Care Partner Well-Being Is Diminished in End-Stage Liver Disease.

Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners' caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients. The purpose of this study was to provide a collective presentation of patterns and determinants of well-being as measured by caregiver strain, depression, sleep, and quality of life in a cohort of informal family care partners for adult outpatients with end-stage liver disease. Care partners (age > 18 years) were recruited from two liver clinics within two tertiary health care systems and invited to complete a cross-sectional survey. They completed the Multidimensional Caregiver Strain Index, Patient Health Questionnaire, Pittsburgh Sleep Quality Index, Short Form Health Survey, and Mutuality Scale. Descriptive statistics and latent class mixture modeling were used to analyze these data. The sample was predominantly female and White. The well-being of care partners was diminished. Three distinct classes of well-being were identified: mildly diminished (53.2%), moderately diminished (39.0%), and severely diminished (7.8%). Those at greater risk of worse well-being were younger, spouses, and had poorer relationship quality with the patients. To improve the well-being of care partners in moderately and severely diminished classes, assessing and addressing caregiver strain and co-occurring symptoms is essential. Addressing this strain and symptoms has the potential to maintain or optimize care partners' ability to provide care to patients. Future researchers should include longitudinal and dyadic studies to examine how patients' disease progression and symptoms may affect family care partners well-being and vice versa.

Exploring the role of palliative care occupational therapists in supporting compassionate communities in end-of-life care.

The compassionate communities' movement is a public health approach to end-of-life care that emphasises the integral role of communities in supporting and caring for dying persons and their informal carers. Although occupational therapists have well-established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities. Data were gathered via semi-structured interviews with nine Australian occupational therapists with experience in specialist palliative care. Interview questions were based around the British Columbia Compassionate Community Ideal framework. Key themes were derived through qualitative descriptive analysis, blending deductive, and inductive reasoning. Interviewees indicated that occupational therapists have a role in supporting compassionate communities that centres on the facilitation of networks and connections between palliative care professionals and in the promotion of informal care networks. The importance of education and awareness raising were also discussed as valuable to the development of community capacity. It was also suggested that occupational therapists have important skills to support dying persons and their caregivers to remain engaged and safe in their homes and communities, in a meaningful and sustainable way. However, many interviewees maintained a profession-centric view on control within compassionate communities, as opposed to approaches that are community led. Findings offer early insights into the promise and potential of occupational therapists in supporting the compassionate communities' movement. However, education regarding the ethos of the compassionate communities' movement so as to facilitate a shift away from professionally oriented modes of practice may be needed to maximise success.

Tools to measure the burden on informal caregivers of cancer patients: A literature review.

(1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of interest of existing assessment tool entries. The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools. A search was conducted using the keywords 'cancer', 'caregiver', 'burden' and 'scale' in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their 'primary reference' studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients. This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks. This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources. What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity. What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources. Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers. Retrieved with reference to systematic evaluation. No patient or public contribution.

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

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. 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. 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. 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. 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. 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. The authors have adhered to the EQUATOR STROBE Statement. A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.

Content validity of the EQ-HWB and EQ-HWB-S in a sample of Italian patients, informal caregivers and members of the general public

BackgroundThe EuroQol Group recently developed two new instruments, the EQ Health and Wellbeing (EQ-HWB) and the EQ Health and Wellbeing short version (EQ-HWB-S). The EQ-HWB and EQ-HWB-S are intended to capture a broad range of health and broader quality of life aspects, which may be relevant to general public members, patients, their families, social care users and informal carers. This study assesses the content validity of the Italian version of the two instruments in a sample of Italian patients, social care users and informal carers.MethodsParticipants were recruited using a convenience sampling approach. One-on-one interviews were carried out using video-conferencing interviews. A semi-structured topic guide was used to guide the interview procedures, with open-ended questions supplemented by probes. Participants were asked to explain important aspects of their health and quality of life, to complete the questionnaires and verbalize their thoughts.ResultsTwenty participants comprising of patients (n = 9), informal carers (n = 6), and members of the general public (n = 5) participated to the study. Content validity was summarized into six main themes: comprehension, interpretation, acceptability, relevance, response options and recall period. All participants found the instruments easy or quite easy to understand and to respond to. Items were relevant for all three groups of participants, and response options appropriate.ConclusionsThe Italian version of the EQ-HWB showed content validity in measuring health and wellbeing in a mixed Italian population.

Telehealth in Informal Caregivers of Stroke Survivors: A Systematic Review.

Background: There has been an increase in people with disabilities who require continuous care, which often falls to informal carers (ICs). Stroke is one of the conditions where ICs are most needed. Therefore, it is necessary for ICs to improve their caregiving skills and self-care capacity. Telehealth (TH) can facilitate them. The aim of this systematic review is to summarize the evidence of the effects of interventions on ICs of stroke patients. Methods: The search was conducted in Pubmed, Scopus, Web of Science, CINALH, Psychology and Behavioral Sciences Collection, and APA PsycInfo. Key search terms included "stroke", "informal caregiver" and "telemedicine". Only randomised clinical trials were included. Results: A total of 2031 articles were found in the databases, 476 were screened and 19 clinical trials met the eligibility criteria. Different TH programmes have evaluated many outcomes related to physical and emotional health. The TH tools included phone, videophone, web-based interventions, and social media. The most investigated outcome was depression; although contradictory results were found, the TH may have helped to prevent an increase in depressive symptoms. There were inconsistent results on the caregiving burden and the preparedness of the IC. However, TH has positive effects on the health of the ICs, reducing the number of unhealthy days, anxiety, task difficulty perception, and improving psychological health. Conclusions: TH may be a useful tool to improve the abilities and health of ICs of SS. No adverse effects have been reported. More quality studies evaluating the effects of telemedicine on the ICs of stroke survivors, as well as the most appropriate doses, are needed.

Developing and testing a reflection method for implementation of the informal care guideline in community nursing: Design-based research.

To develop a reflection method for community nurses and certified nursing assistants to support the implementation of the Dutch Informal Care guideline in daily care. Design-based research. A design group and four test groups of community nurses and nursing assistants were formed to develop a reflection method that aligns with the needs and preferences of its end-users. The design and test group meetings were video recorded. The video data were iteratively discussed and analysed thematically to adapt and refine the method and to identify its key features. A final reflection method was developed. Five main themes were identified from the analysis: the group, reflective triggers, knowledge about the guidelines, the coach and preconditions. The themes are linked to nine key features representing the building blocks of the reflection method. The key features are group size, participants with different (educational) backgrounds, pairs of participants, expressing thoughts, video feedback, reflection game, making the connection with the guideline, coaching as a process facilitator and meeting organizational and contextual conditions for implementation. An evidence- and practice-based reflection method for community nurses and certified nursing assistants is developed to support the implementation. By involving community nurses and certified nursing assistants, the method closely matches their needs and preferences. Critical elements of the reflection method are a game element, video feedback and working in pairs in a group of participants from different (educational) backgrounds. Guidance is needed to make the transfer from theory to practice. A reflection method for community nurses and certified nursing assistants was developed to enhance care work according to guideline recommendations, aiming to improve the care provided by informal caregivers. The COREQ guideline was used. This reflection method was developed in close collaboration with all stakeholders during the entire study.

Modelling social networks for children of parents with severe and enduring mental illness: an evidence based modification to the network episode model.

The Network Episode Model (NEM) is a well utilised model conceptualising how social networks, valuable resources which can positively impact wellbeing and functional outcomes, are responsive to the needs of people with physical and mental health difficulties. Children of parents with severe and enduring mental illness (COPMI) are impacted by these illnesses through the intersecting roles of kin relation, informal carer, and dependent. However, it is not clear that social networks effectively respond in kind to the child's episodic need.We draw upon qualitative data to propose a new multi-factorial conceptual model (COPMI-NEM), triangulating parental mental illness, child's developmental stage and social ties to theorise how social networks do respond and adapt to children's needs.The model illustrates how networks are typically flexible and responsive to visible age-related needs, but less reactive to more obscured needs. Successful network navigation and negotiation of support relies on multiple factors including the child's ability to successfully activate social ties and the availability of formal networks. We propose a new theoretically and empirically informed NEM model also available for testing, refinement and validation in other young carer populations exposed to episodic parental health needs. Findings from this study could be used to generate network informed interventions for this and comparable populations.

Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context?

Population preferences for care at the end of life can inform palliative care policy and direction. Research investigating preferences for care at the end of life has focused predominantly on the context of advanced cancer, with relatively little attention to other life-limiting illnesses that are common causes of death. We aimed to investigate preferences for the care of older people at the end of life in three different disease contexts. The purpose was to understand if population preferences for care in the last 3 weeks of life would differ for patients dying from cancer, heart failure or dementia. Three discrete choice experiments were conducted in Australia with a general population sample using similar methods but different end-of-life disease contexts. Some attributes were common across the three experiments and others differed to accommodate the specific disease context. Each survey was completed by a different panel sample aged ≥45years (cancer, n=1548; dementia, n=1549; heart failure, n=1003). Analysis was by separate mixed logit models. The most important attributes across all three surveys were costs to the patient and family, patient symptoms and informal carer stress. The probability of choosing an alternative was lowest (0.18-0.29) when any one of these attributes was at the least favourable level, holding other attributes constant across alternatives. The cancer survey explored symptoms more specifically and found patient anxiety with a higher relative importance score than the symptom attribute of pain. Dementia was the only context where most respondents preferred to not have a medical intervention to prolong life; the probability of choosing an alternative with a feeding tube was 0.40 (95% confidence interval 0.36-0.43). This study suggests a need for affordable services that focus on improving patient and carer well-being irrespective of the location of care, and this message is consistent across different disease contexts, including cancer, heart failure and dementia. It also suggests some different considerations in the context of people dying from dementia where medical intervention to prolong life was less desirable.

The mental health and well-being implications of a mesothelioma diagnosis: A mixed methods study

PurposeMesothelioma is an incurable, asbestos-related cancer with a poor prognosis. There is scant evidence about the mental health and well-being impacts on patients and carers living with the illness. This study aimed to investigate mesothelioma's impact on mental health and well-being and the scale of mental health conditions in patients and informal carers. MethodsA mixed-methods design was used: a cross-sectional survey of mesothelioma patients and informal carers plus semi-structured interviews with patients and carers. The survey used validated scales collecting data on mental health aspects of mesothelioma: the EQ5D to assess health-related quality-of-life; the Hospital Anxiety and Depression scale; the PCL-5 to assess Posttraumatic Stress; and the Posttraumatic Growth Inventory. The datasets were integrated during analysis. Results96 useable survey responses were received. A clinical level of depression was reported by 29 participants (30.21%), of anxiety by 48 (50%), of posttraumatic distress disorder by 32 (33.33%), and of posttraumatic growth by 34 (35.42%). Carers had worse scores than patients. Three main themes were developed from interviews with 10 patients and 11 carers: ‘Prognosis’, ‘Support from services’, and ‘Social connections and communication’. ConclusionsHealthcare professionals delivering a mesothelioma diagnosis require regular training in communication skills plus updating in current treatment options, so they provide an appropriate mix of realism and hope. Better signposting to mental health support is needed for patients and carers. Our introduction of posttraumatic growth into the mesothelioma literature is novel. We recommend specialist nurses are trained to recognise, understand, and foster posttraumatic growth.