Cost of long-term care and balancing caregiver wellbeing: a narrative review.

INTRODUCTION: Long-term care (LTC) refers to care and support services that are required by individuals who lack the ability to perform important daily routines and may be dependent on others for personal, social, and medical needs over a sustained period of time. LTC may be broadly categorized into formal and informal care, where formal care is provided by professionals who are compensated to provide these services and informal care captures the care services provided without compensation by family members, friends, or other unpaid individuals. AREAS COVERED: In this narrative review, we identify and synthesize evidence to evaluate the cost of long-term care while balancing the needs of caregivers. We searched Embase and EconLit for studies published from 2010 to November 2023. Our search strategy used a combination of keywords such as 'long-term care,' 'caregiver burden,' 'caregiver support,' 'cost of care,' and 'caregiver wellbeing.' We include both formal and informal LTC, as well as predictors of caregiver wellbeing. EXPERT COMMENTARY: This review highlights the global variability in LTC costs and the significant burden on caregivers, emphasizing the need for policy interventions and comprehensive insurance schemes. Future research should focus on standardized assessment tools, intervention effectiveness, and integrating caregiver support into healthcare models, ensuring holistic and sustainable LTC solutions.

Catastrophic healthcare expenditure and caregiver burden in pediatric chronic kidney disease - a mixed methods study from a low resource setting.

BACKGROUND: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE). METHODS: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b-5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden. RESULTS: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern. CONCLUSION: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions.

Maternal Distress and Adolescent Mental Health in Poor Chinese Single-Mother Families: Filial Responsibilities-Risks or Buffers?

Single motherhood and poverty have a significant, negative impact on mothers and their children. When their mothers experience maternal distress, adolescent children have to take up more instrumental and emotional filial responsibilities to comfort their mother and adapt to related changes. Based on 325 mother-child dyads of Chinese single-mother families experiencing economic disadvantage, this study examined the relationship between maternal distress and adolescent mental health problems (indexed by anxiety and depression) and the moderating roles of instrumental and emotional filial responsibilities. Results indicated that maternal distress was positively associated with anxiety and depression in adolescent children. In addition, instrumental filial responsibility intensified the associations of maternal distress with adolescent anxiety and depression. Moreover, the moderating role of emotional filial responsibility in the predictive relationship between maternal distress and adolescent anxiety was different in boys and girls. Adolescent girls with more emotional filial responsibility reported higher adolescent anxiety than did those who shouldered less emotional filial responsibility when their mother exhibited more distress, whereas the relationship between maternal distress and adolescent anxiety was stable in boys, regardless of emotional filial responsibility. In short, the present study showed that parentification was likely to occur in poor Chinese single-mother families, and adolescent children who took up a more caregiving role in the family exhibited poorer mental health. Family counselling and tangible support for single-mother families experiencing economic disadvantage are urged.

Economic Burden of Patients with End-Stage Kidney Disease and Their Caregivers: A Scoping Review.

Hemodialysis (HD) and peritoneal dialysis (PD) treatments impact the economic burden and psychological distress faced by end-stage kidney disease (ESKD) patients and their caregivers. This review aimed to discuss the concept of an economic burden and the economic burden of different treatment options, and to highlight research gaps regarding the scarcity of previous studies relating economic burden to psychological well-being. We searched five electronic databases for papers published in 2010-2020. Papers focusing on measures of the economic burden from the government's perspective and diseases other than ESKD were excluded. Out of the 6635 publications identified, 10 publications were included. Three categories of economic burden were identified, namely, direct medical costs, direct non-medical costs, and indirect costs. Direct medical costs required the highest expenditure, whereas the lowest economic burden was for indirect costs. HD patients incurred a higher economic burden than PD patients. Most of the studies were carried out in Asia. The results of the research suggest that the economic burden may affect patients and caregivers, but it is unclear whether the economic burden affects the psychological well-being of the patients and caregivers. Very few studies have assessed the relationship between economic burden and psychological well-being, and further research is needed to gain further insight into the relationship between these two variables.

Assessment of caregiver burden in patients undergoing in- and out-patient neurosurgery.

The objective of this study is to describe the caregiver burden, as well as the financial burden among caregivers after inpatient and outpatient neurosurgical patients. In this single center, observational study, adult patients undergoing elective inpatient or outpatient neurosurgery (supratentorial tumor resection or lumbar microdiscectomy) and his/her caregiver were recruited for the study. Bakas Caregiving Outcome Scale (BCOS) was used to assess caregiver burden and data was collected from preoperative period until post-operative day (POD) 30. Cost burden was assessed by a cost diary from day of surgery till POD 7. Forty-eight patient-caregiver pairs (21 inpatient craniotomies, 7 outpatient craniotomies, and 20 outpatient microdiscectomies) completed the study. BCOS values were in the negative impact range (<60) on POD1 in craniotomy group and improved to positive impact range (>60) after POD3. Median BCOS score remained at 60 in outpatient microdiscectomy. 56% of caregiver had at least 1 day of loss of income and 20% lost income throughout first 8 days. Median Cost (in Canadian dollars) associated with caregiving ranged from C$57 to C$250 amongst different groups. We concluded that caring for patients after craniotomy is psychologically demanding which leads to an increase in caregiver burden. In addition, there is a cost burden for the care givers in the form of missed workdays and additional direct expenses. Further studies are needed to recognize this problem and address the burden among the caregivers in the neurosurgical population.

Burden of illness of progressive familial intrahepatic cholestasis in the US, UK, France, and Germany: study rationale and protocol of the PICTURE study.

Background: Progressive familial intrahepatic cholestasis (PFIC) is an ultra-rare disease with a considerable burden on pediatric patients and their caregivers, impacting quality of life (QoL). The mortality rates highlight a significant need for efficacious treatments. Real-world data on associated costs and QoL are needed to gauge the potential impact of new pharmacological treatments.Methods: Clinical and socio-economic burden of PFIC on patients/caregivers, health systems, and society will be assessed. Patient/caregiver- and physician-level retrospective cross-sectional data will be collected from the US, UK, France, and Germany, for PFIC types 1, 2, 3.A representative sample of physicians will provide clinical and resource utilization information using an electronic Case Report Form (eCRF). Patient/caregiver surveys will collect socio-economic and QoL data, enabling assessment of PFIC impact on QoL. Mean costs (direct medical/non-medical, indirect) will be calculated.The study materials were reviewed by medical professionals and patient representatives and received ethical approval from the University of Chester.Discussion: The study aims to reveal the unmet medical need, disease burden, resource utilization, and costs of PFIC, to raise awareness with policymakers and healthcare professionals, and provide support for the patient/caregiver community. As novel PFIC therapies recently emerged, this study will yield quantifiable data for health technology assessments.

The use of diet modifications and third-party disability in adult dysphagia: The unforeseen burden of caregivers in an economically developing country.

BACKGROUND: One of the interventions for dysphagia is diet modifications, involving a variety of resources and consumables. In South Africa, where 49% of the population live below the poverty line, the necessities for it are not always feasible for the patient and their family. This coupled with the responsibility of caring for a loved one with disability can culminate into caregivers experiencing third-party disability (TPD). OBJECTIVE: To describe the experiences of TPD of caregivers when implementing dysphagia management strategies at home within an economically developing country context. METHODS: This was a qualitative study using phenomenological principles. Data were collected using a semi-structured self-developed interview tool at three tertiary level public sector hospitals. Seven participants and six caregivers were interviewed. Rigour was obtained through credibility, triangulation, transferability, dependability and confirmability. The data were analysed using a thematic content analysis technique following a top-down approach to coding. RESULTS: The use of diet modification is an appropriate management strategy if the patients' access and contextual limitations have been taken into consideration. It was evident that the caregivers had multiple International Classification of Functioning, Disability and Health domains affected, which restricted their daily functioning including activities, participation and environmental and personal factors. CONCLUSION: The management of dysphagia needs to be family centred and the caregiver's role and needs have to be considered by all team members when determining long-term management plans. The specific area of how the caregiver's quality of life was experienced also required further exploration.

Family Caregivers of Veterans Experience High Levels of Burden, Distress, and Financial Strain.

BACKGROUND/OBJECTIVES: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. DESIGN: Cross-sectional study. SETTING: National telephone surveys administered from 2017 to 2019. PARTICIPANTS: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). MEASUREMENTS: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. RESULTS: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain. CONCLUSION: Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.

Health state utilities associated with caring for an individual with cutaneous T-cell lymphoma (CTCL).

AIM: Cutaneous T-cell Lymphoma (CTCL) is a rare form of non-Hodgkin lymphoma characterized by skin lesions, which can negatively impact the quality of life of both patients and their caregivers. The Decision Support Unit (DSU) at the National Institute for Health and Care Excellence (NICE) in the UK recently outlined a rationale for the inclusion of caregiver burden in economic evaluations. This study aimed to estimate utilities for health states associated with being a caregiver for an individual with CTCL at different stages of treatment. MATERIALS AND METHODS: A targeted literature review and interviews with CTCL specialists informed the development of health state vignettes describing the experience caring for an individual with CTCL. The vignettes were evaluated in interviews with the UK general population using a visual analogue scale (VAS), the time trade-off (TTO) method and the EQ-5D-5L. RESULTS: Four vignettes were developed describing the caregiver experience for an individual with CTCL on i) second line treatment, ii) third line treatment, iii) end of life care, iv) a post-patient death. One hundred interviews were conducted to evaluate the health state vignettes. The pattern of results was similar across the evaluation methods: second line treatment (VAS: 39.2, TTO = 0.52, EQ-5D-5L: 0.56), third line treatment (VAS: 31.1, TTO = 0.39, EQ-5D-5L: 0.37), end of life care (VAS: 28.2, TTO = 0.37, EQ-5D-5L: 0.31) and post-patient death (VAS: 41.2, TTO = 0.63, EQ-5D-5L: 0.59). Limitations and conclusions: These findings highlight the substantial burden of caring for an individual with CTCL and the importance of including caregiver burden in the health technology assessment review process. A limitation is the hypothetical vignette approach, which meant the TTO participants did not have experience of caring for individuals with CTCL, but were imagining this state. There is also the possibility that they may also be considering the patient experience when responding to the questions.

Quantifying the economic impact of caregiving for Duchenne muscular dystrophy (DMD) in Spain.

AIM: To establish the potential economic burden in caregivers to patients with DMD and the potential causative factors. METHOD: Caregivers to patients with DMD were recruited through the DMD patients Register and questioned about several economic aspects using "ad-hoc" questionnaires. RESULTS: All families, apart from one (97.2% n = 36), incurred in monthly medical costs (44% of the families more than 50 euros/month). 97.2% of the households considered looking after a patient of DMD as financially burdensome, and 80.5% of households declared to have suffered work changes, especially the mothers (job timetable-related mainly). The presence of obsessive-compulsive disorders (OCD) in patients was significantly associated with caregivers' high financial burden as these were six times more likely to have this perception OR = 6468 IC 95% (1056-39,601), p = 0.043. Also, when patients had learning difficulties, caregivers had up to six times more chances to incur in monthly expenditure for formal care OR = 6089 IC 95% (1112-33,342), p = 0.037. INTERPRETATION: Caregivers have relevant financial burden that might be conditioned by the clinical condition of the patient. WHAT THIS PAPER ADDS: Quantitative data about financial burden in DMD Spanish families providing informal care. Identification of the patient's main clinical issues associated with financial burden.

Challenges of combining work and unpaid care, and solutions: A scoping review.

The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O'Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discussed.

Burden on Caregivers of Adults with Multiple Chronic Conditions: Intersectionality of Age, Gender, Education level, Employment Status, and Impact on Social Life.

Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.